Kendra's World

6 years old

2011-05-10T14:01:00.000+02:00

A bit of a belated birthday this year, little angel. This does not mean that we are forgetting, by no means. We went away for Easter and were at your Ouma and Oupa's house on your birthday. We bought you a cake though it was a bit rich for me, but the kids enjoyed it. I hope you know that Mommy and Daddy and Branston were thinking about you all day and wishing that you could be here to celebrate with us.

Then it was Daddy's birthday and then Mommy's and then another Mother's Day without you. Daddy and Branston spoiled me and little Mitchell was entertaining but it would have been so nice to have a little girl thrown into the mix, much as I love my boys. A six year old little girl. No matter whether you may or may not have been walking or talking by now - nobody can say what you would have looked like or how you would have progressed. I wish I knew what you would have looked like now - gorgeously blonde like your little brother with plenty of curls, gentle like your older brother, still as smily as ever.

Happy birthday, sweet girl. Love you.

5 years

2011-03-24T08:49:00.001+02:00

5 years ago life as we knew it ended.

We miss you, little angel.

Say what?

2010-09-06T16:16:00.000+02:00

This comment was left on my last post:
hey girl. i was meaning to post something really mean at first, but please, try to move on. God bless
Huh?? If you say you were going to post something really mean then don't you think that is really mean in itself? And why was 'Anonymous' going to be mean? Has he/she ever lost a child? Do they know what it is like to carry a life inside you for 9 (8 in my case) months, watch them grow for 11 months and then have them cruelly taken away from you? To tell me to move on and then to say god bless? I don't think they realise that such a comment can be hurtful even after 4,5 years when I am supposed to have moved on. And FYI, anonymous, I have a beautiful baby boy now who I am totally enjoying. If I want to come and express the occasional feelings of longing for the child I lost in this place, which is one place where I put down my feelings about my loss, as you may have noticed I don't post that often, I do not appreciate being told to move on. I use this public forum for this as there are actually people out there that it helps.
End of rant.

5 years old.

2010-04-22T14:01:00.000+02:00

Happy birthday my angel. Tomorrow you will be 5 years old. We may not be able to bring you flowers as we are going away for the weekend but we will be taking some cake along to celebrate. We always get cake for your birthday even if you are not physically there to share it.

I miss you my baby. I miss the 5 year old little girl I never got to know. I hope they throw you a big party up in heaven.

4 years

2010-03-24T10:27:00.000+02:00

4 years ago today my world came crashing down. It is hard to believe that 4 years have passed. Sometimes it feels really fresh in my mind, other times more bearable. Time does ease the pain but it never takes it away.

A lot of people have asked me if having another baby has helped or made things worse. There is no simple answer to that. It brings back a lot of memories which often makes one sad but sometimes it is nice to remember something that you had forgotten and may not have remembered otherwise. You cannot help but compare Kendra and Mitchell. Obviously Mitchell is already more advanced than Kendra ever was. It kind of highlights the fact that she was so delayed. Anyway, I had quite a bit I wanted to say on the topic but my mind seems to have gone blank. It seems like my blog has done it's job and helped me along the path of healing but now I just don't know how to write down my feelings anymore. Maybe I no longer need it like I did back then. Maybe my creative juices have dried up. I haven't scrapbooked in ages either.

I dreamt last night that Kendra was in a horrible cemetery and someone was telling me that we could have her removed and taken somewhere nicer. It took me a while after I woke up to remember that she was already somewhere very nice. We will go there this afternoon. Hopefully it doesn't rain.

Moving on...

2009-07-16T10:57:00.000+02:00

My entire post was just deleted as I tried to publish it!! Thanks, Google! No wonder it has taken me this long to create a new blog! But I finally got around to it, a bit late for many pregnancy updates but anyhow...

I decided to create a new blog that was about the family and not just focussed on Kendra. Kendra's World was created to keep people up to date with my little angel's progress and then continued as a place to express my grief. But I have never felt very comfortable writing about anything non-Kendra related here. So, I kept waiting to get all my ducks in a row, ie get the right photos scanned in, find a catchy title, enough time to do it all, etc. Last week I had internet problems while setting it up and gave up. But now I decided to just do the bare minimum and get a post up, the rest can follow later (or not!). So please go to the Meiring Meanderings and check it out. I will still do the occasional update on Kendra's World so don't forget about it completely, but only now and again.

We are moving on but not forgetting, NEVER forgetting......

Happy birthday, sweet angel

2009-04-23T11:35:00.000+02:00

Dear Kendra

Happy birthday sweet angel. Four today! Hard to believe that 3 years have gone by since you left us. So sad that the only pictures I can post are of us at the memorial park.

We took 4 pink balloons and released them to fly away up to you. Daddy thought I was crazy, but I tried to tie 4 pink roses to the balloons as well. Granny bought you the roses. The first balloon flew away nicely but the other 3 sank onto the dam, the roses were a bit heavy for them! So we took the roses off and let the balloons go off on their own. We dropped the roses into the dam but the ducks tried to eat them. I hope we didn't kill off the memorial park ducks!!

I wish I knew what you would have looked like at 4. Branston was wondering too what you would have been doing. Would you have walked? Talked? What kind of treatments would we have followed to get you to where you should be? Would we have done the eye operation to open up your little eye? At least you don't need any of that now.

We are looking forward to the arrival of your new baby brother (who, according to the last scan, is totally ok, all measurements normal, everything looking good). It is very sad that he will never know his big sister. He kicks me a lot, reminding me of you when you were in my tummy. You also kicked me a lot, unlike Branston who was fairly still.

Anyway, little Kendra, we all miss you a lot - Mommy and Daddy and Branston and everyone else. We wish you were here with us today and always.

Love

Mommy

3 years

2009-03-24T11:41:00.000+02:00

Wow, 3 years since our little angel left us. 3 years ago at this time I was still sitting at the hospital, none the wiser about what was in store.

When Kendra went in for her op the previous year in August I carried her through to the theatre. While we were at the door putting on our gowns and slippers to go in we heard someone in an adjoining room being given what was obviously very bad news. Listening to the woman's loud and anguished cries I remember thinking 'God, I hope that never happens to me, poor woman' before the nurses rushed me into the theatre. Little did I know. It is amazing how one thinks back to that moment of being told and of being taken through to the bed where my baby was waiting, barely conscious of all the people staring as we walked past. I don't know why I go back to those days as if it would make it less painful if I relive it or might make it go away. I even feel sorry for the other occupants of the ICU at the time. It was visiting hour and can't have been very pleasant for the visitors. Now, 3 years later and some of the initial raw pain has diminished but it is still there running down my face whenever I think about it.

I have been rather stressed out at work lately which really does not help things. I was supposed to take the whole day off today, but there is just so much to do. Also why I have been slack with doing postings on the blog. Just get so sick of the computer and it is easier to read other people's stories than write down my own. I am stopping work for the day now though and am going to pop in to visit a friend on my way to the memorial park. She is due any day now and her little angel is also resting at the memorial park so she knows some of what is going on with me at the moment.

So, on to some baby news. Baby is 19 weeks along now and all is going well. We went for a foetal assessment at 13 weeks and all measurements are average. Never did average sound so good! It is a boy, much to my son's delight. We have not chosen a name yet but Branston likes Mitchell. I am still undecided. Any ideas? My blood pressure has stabilised, aside from an overnight stay in the hospital when it got a bit high. This baby is taking after his sister as far as activity goes. He is already kicking me to bits and my tummy has grown considerably. I am really not looking forward to the last few months, remembering how uncomfortable I was before. I can't believe how uncomfortable I am already. I have another scan where we check all the organs and do a bunch of measurements on 8 April. I will try and do an update afterwards. Branston is going with as it is in the school holidays. He is very excited.

It's a what????

2009-01-16T11:08:00.000+02:00

Well, long time no post. I suppose it is a good thing that I do not have a lot to post about. I think my feeling is that I have pretty much said all there is to say about my feelings of grief at losing a child. They have not gone away, they are ever present, just not so acute. I still cry whenever I see someone on TV being told that their loved one (be it a child, spouse whatever but especially a child) has died. There was an episode on CSI the other day where the CSI agent had to tell the mother that her son had been shot dead. OMG, 'snot en trane' (snot and tears for non S. Africans)! Had to fast forward through that section.

Moving along, so what do I have to post about now, you ask? Well, if you haven't guessed by now from the pic below, then I don't know! Ok, let me give you the juicy details. I am now almost 10 weeks pregnant. And no, it was not planned. I won't go into the details but it was a bit of a slipup and miscalculation on our side.

Once we got over the initial shock of finding out I was pregnant we had to deal with another. It might be twins! I went for an early scan due to my history and it showed a definite 2 sacs though 1 was much smaller than the other. The doc said this could be due to the fact that they were conceived at different times or else the smaller one was being reabsorbed. We had to wait 2 weeks over Christmas and New year to find out that it is only one. Obviously it was the second scenario.

I have found it quite difficult to tell my friends who have been struggling to conceive about the pregnancy as I know it must be hard for them to hear of 'accidents' when they are struggling. If they, or anyone else out there in the blogosphere, feel hurt by this news then I do apologise and I do try not to go on about it.

The dominant feelings I am having at the moment about this pregnancy is that I am scared. Not only scared that something will go wrong during the pregnancy but also afterwards. I think we will be on tenterhooks for the first 11 months of this baby's life. But it is still early days and for now we just have to get through the next few weeks, then the next few and so on. Lots of mixed feelings going on about getting all the recommended tests etc.

None of this is helped by the fact that I have developed high blood pressure. At my last appointment my BP was extremely high. I have been put on medication and have been on bedrest for the last week and a half. It seems to have stabilised now, thank goodness. I was having visions of having to be admitted and terminating the pregnancy and all sorts. I have a BP monitor so can keep track of it from home now. Bad news is that the high BP is probably going to stick around after the pregnancy and I may have to take medication forever.

Other than that I have been having quite bad morning/all day sickness and my hands and feet are already starting to swell up. I also suffer from restless feet during pregnancy but usually only near the end. Well it started a few weeks ago already and I am really battling to sleep at night, getting up at all hours to put my feet under the cold tap and putting cream on etc. In other words this pregnancy is really kicking my butt!!

I am thinking of starting a new blog to keep track of pregnancy and life afterwards but think I will wait to do that until after 12 weeks.

September

2008-09-25T12:17:00.000+02:00

Wow, I can't believe September is almost over already. Christmas is just around the corner and then it will be 2009 and heading for 3 year anniversary of Kendra's death. Time goes on and it gets easier to talk about her. I usually find though that most times it is me who brings her into a conversation. I think people are still scared of upsetting me by mentioning her. Though you do get those who either don't think about it or think we are 'over it' or feel that we can handle it now.

And they would be right in some respects. We will never ever be 'over it'. You don't ever fully recover from losing your child, whether they were stillborn or died as an older child or an adult. Different types of pain but still the same. But I do feel better able to talk about her now in casual conversation. And I want to. I need to feel that she was there and made a difference. I had 2 children and people must acknowledge that. I must say that amongst my friends if I do talk about her now, there aren't uncomfortable silences like there may have been earlier. People don't turn on their 'shame, so sorry for you' faces. It is just part of the conversation. Which is nice. Not to say that I want everyone to suddenly talk about her all the time!! Tricky, dealing with bereaved parents, isn't it? I don't even feel like I get it right with my friends who have lost little ones all the time. And I should know how they feel and what they need, right? Well, no, not necessarily. Not everyone grieves in the same way and what is right for one may not be right for another. But I think the important thing for all grieving parents is that people acknowledge their loss.

Last night I was holding little Ethan while his mommy made him a bottle. He is just over 1 and is the most beautiful little boy. I must ask his mommy if I can post a pic of him and his gorgeous brother. Anyway, he cuddled into my shoulder and that really made me miss those days. Not only with Kendra as she wasn't much of a cuddler but with Branston. Gathry, best you go for the snip quickly as I am getting a bit broody here!! I have many thoughts on having another baby but what it boils down to is that logic says we should not have another (many reasons)and we have decided not to but the heart still longs for it.

Anyway, you can tell I haven't blogged in a while from all the rambling:) What I came on here to say before September is over is that I have been thinking about little Chad and Morgan a lot in this month, their birthday and angel day anniversay month. L, M and J, I have been thinking of you all, and I know you haven't been showing it much, it must have been a hard month for you all, especially with Mike being away the whole month. I hope Chad and Morgan and Kendra and little Jack (another friend's baby) have been partying it up along with all the other little babies up in heaven.

Oh, and thank you to those who left condolences for my gran's passing. It was appreciated.

Rest in peace Ouma

2008-08-26T23:52:00.000+02:00

My dad's mom passed away this morning at 90 plus years of age. Prior to this photo(taken last year) the last time I saw her was at my wedding. I am really glad that Branston got to meet his great grandma. I just wish he could have known her better and that she had met Kendra. I would like to go up for her funeral but I don't know if finances and work will allow it.

Now Kendra has 2 great grannies looking after her. I know Ouma is happier where she is now as she was not having a very good time of it lately. Now she can rest.

Edited to add: Something seems to be wrong with my formatting but if you just try and highlight the area below the picture you can read it all.

What a change!

2008-05-28T21:48:00.001+02:00

Picture 1 was taken 2 days after he went into hospital. Picture 2 yesterday. I would like to thank everyone who has been asking after my family and myself and all who have been sending prayers and healing my dad's way. He has made an amazing recovery. He went home today and, although very weak, is doing very well. Especially for someone who had a heart attack and a stroke. His speech is a little slurred but that could just be because his tongue was injured during one of his seizures. There does not appear to be any paralysis at all. Pretty miraculous, I would say. Now he just has to eat well and listen to the doctor and he can be healthy again. I know he can do it.

It was hard going into the hospital so often and especially into ICU. But I think I just blocked out the old memories. Sometimes you just have to force yourself to face things like that and once you have done so, it gets easier. I think having been into hospitals a few times in the last few years definitely helped.

Anyway a big thank you to everyone.

It never rains, it pours...

2008-05-22T19:36:00.000+02:00

Can everyone send some positive vibes to my dad in St Dominics hospital in Gonubie, SA? He had a heart attack AND a stroke on Wednesday and some seizures. I am with my mom at the moment, my sister and I flew up to be here and my brother is flying in tomorrow morning.

Going into ICU again brings back a lot of old memories which I would have preferred to keep buried. All the machines look the same as those used on Kendra, except the ventilator which he is on. He is still quite heavily sedated but he does seem to be aware of us some of the time, so hopefully the stroke was not too bad. His right side does seem to be quite strong. He has had to be tied down as he has been thrashing around quite a lot and probably trying to pull the tubes out, knowing him. It is really not very pleasant to see him like that, especially for my mom. But it is important for him to know that we are there for him so we have to go. Trying to get the info we need out of the doctors and nurses is another story. Talk about arrogant doctors! What a mission.

And of course, the car had to choose now to go and give up the ghost as well. The clutch was busy packing it in so we had to send it in to the garage this morning and had to hire a car so we can get to the hospital.

3 years old

2008-04-22T21:42:00.001+02:00

Well, it is with mixed feelings that we approach Kendra's 3rd birthday. I cannot believe she would have been 3 tomorrow.
How often I wonder what she would have looked like. Would her hair have stayed blonde? Maybe it would have darkened a little like her brother's.
More importantly how would she have developed? Would she have sat or walked before 2?
At 3 would she still be crawling or would she be running already? Would there be any words?

These are things that nobody can answer. That really gets to me. Others who have lost their babies would at least have some idea of what their children would be doing at 3. I am certainly not saying they are any better off than me. Nobody who has lost a child is better off than anyone else who has lost one, regardless of when or how they died. Would it be harder though, for me to look at another 3 year old and think that Kendra would be doing that now? Or is it harder to not know? I guess we can't answer that.

All I know is I miss my baby and no matter what she would have been doing at 3, I really wish she were here. I wish I had to make plans for 2 children instead of one. I wish Branston had a sister he could sometimes complain about and fight with, as all siblings do. When I see Branston with little girls or boys younger than him and how good he is at playing with them, that makes me so sad. He would make a really great older brother.

Happy birthday my little angel. Mommy, Daddy, Branston and Oupa will go out to the memorial park tomorrow and take you some birthday cake. I will even break my diet and have some of your cake! We miss you, baby.

PS: if you can, please go to the March for Babies on the right and sponsor Billy when she walks to raise money for preemies.

2 years ago...

2008-03-24T18:54:00.000+02:00

at about this time my baby died. 2 long years. Yet they seem to have gone so quickly. I cannot believe she has been gone so long yet sometimes it seems just like yesterday that it all happened.

2 years ago I went home from the hospital to spend an hour with my husband and son.

2 years ago I received a phone call from the hospital saying I must please get back to the hospital, she's taken a turn for the worse.

2 years ago I went through a red traffic light to get back to the hospital.

2 years ago when I tried to go to her they turned me away and said the medical team was still working on her.

2 years ago we had to wait in the waiting room, knowing that the news was going to be bad, yet hoping against hope that it would not be.

2 years ago right now the doctor was saying he's sorry, they tried for 40 minutes but couldn't save her.

2 years ago I knew what it felt like to lose a child.

2 long years ago.

I miss you, my baby, I know you will always be with me in my heart, I just wish it was in person. Mommy and Daddy and Branston will always love and miss you very much.

Linking

2008-03-15T08:24:00.000+02:00

It is 6 months since little Chad gave up his struggle. He blessed his parents with 2 days of his life. Lucy, Mike and Jordan we are thinking of you today.

Also thinking of Rosepetal. She is about 2 weeks away from delivering a healthy baby. Please all send all your energy to her, she has been through a really rough time and this pregnancy has not been easy.

If anyone is interested in helping with research for preemie babies then go visit Liz. She is collecting for the March of Dimes. They have a big walk on 26 April to raise money for this worthy cause. Unfortunately I can't join them on the walk, firstly since it is our 40th party that day and secondly, there is a bit of a distance issue! But I will be donating some money, not too much with our terrible exchange rate, but every little bit helps. And it is perfectly easy to do if you go through the link she provides. I gave a little last year and I even got a thank you note in the post (snailmail).

Old baby things

2008-03-10T17:18:00.000+02:00

We hauled some boxes out from the storeroom yesterday to sort out some of Branston's old toys to give to charity. Most of the boxes had baby stuff in them, a lot of it Branston's old stuff but quite a bit was Kendra's too or stuff that we were keeping for her. It still hurts to look at certain things especially those that were specifically hers.
Every time we sort out old things of hers I throw a little bit more out but there are some things I just cannot get rid of. Strange how it feels almost like a betrayal to get rid of things, even if you give them to family or to needy babies. Even things that she never got to use, like her rocking horse (still in the garage).
Almost 2 years, can you believe it!

Meme

2008-03-07T15:11:00.000+02:00

I have never been tagged to do a meme before but I have seen this one doing the rounds so I thought I would just do it of my own accord.
The rules are simple. Look up from the computer, look around the room where you're sitting and pick up the closest book. And closest really means closest. No cheating by running upstairs to unearth your pink-highlighted college copy of The Critique of Pure Reason or the Prolegomena. Open the book, turn to page 123, count down to the fifth sentence on that page, and then post the next three sentences.

Ok, the first few times I read it was at work and the closest book around was the telephone directory so I thought I would leave it till I got home and use the book I am reading at the moment. It is difficult to know what to put down here as the page starts in the middle of a sentence so I excluded that one. The there is a paragraph of medical terms which are not really complete sentences so I will count the paragraph as 1 sentence. Here goes:
It lives in a deeply grooved area on either side of the brain called the sylvian fissure and impairs both the speech areas and those controlling fine motor skills. BPP is sometimes accompanied by cerebral palsy, causing even greater motor difficulties and loss of control of voluntary muscles. None of this had manifested itself in Schuyler in any dramatic form.

The book is Schuyler's Monster by Robert Rummel-Hudson. I ordered it online last year and it only just arrived (had to wait for it to become available in SA). I often read Rob's blog so I know his story in as far as he has talked about it on the blog but the book makes for fascinating reading. I am sure I will pass it on to the rest of my special needs support group.
I am not going to tag anyone specific but I challenge anyone who hasn't done it yet to do the meme and leave a comment either with your results or pointing to your blog where you have it up.

March

2008-03-03T07:56:00.000+02:00

Well, it is March again. Not my favourite month. The 24th is a public holiday this year which is nice as then I don't have to take leave. It falls on Easter weekend - Ascension day. Strange huh?
There is a strange number thing going on at the moment. Lots of ones floating around. You like the new ticker box I put on the side? This evening I was not going to do a post but then Tertia told me that she had linked to me so I went to see what she had written and then came here. Check all the ones in the ticker box. Plus a few minutes ago the draft autosaved at exactly 11:11pm. And her syndrome is all about the 11th chromosome! I find numbers fascinating. For example Kendra was born at 1am on the 23/04/05 - 12345!

Interesting topic Tertia raised. It is strange how even though we know their spirits have left them, how we cling on to their bodies. I held Kendra for a long time after she died. I just could not bring myself to let her go. She just looked so peaceful, esp compared to earlier when she was in such pain. I sat in that armchair in the hospital for hours holding her. Eventually I got up to go to the toilet and my sister took her. When I got back and took her back again she was so heavy! Then I had to go. The phrase 'dead weight' just kept going through my mind, kind of made it sink in that she was gone. It was a Friday so there was nothing we could do about arrangements until the Monday. I also kept thinking about her being put into a cold room with no clothes on, in a freezer. I kept telling myself that once you are dead you are away from anything that happens to your body but the thought of her little body being so vulnerable, without us there to look after her..... strange how the mind works(or should I say the heart).

When we collected her ashes they were in a plastic bag in a cardboard box. A staff member of the funeral home was having an argument with a client because something had gone wrong with their funeral plans. Not a pleasant experience. Luckily we did not use them for more than the cremation. After that we went to the memorial park and got a nice urn from them and they arranged everything else.
Then the ashes had to be transferred. Now in the hospital Gathry was not able to hold Kendra as he found it too upsetting and maybe did not think he was strong enough. Yet he took those ashes, sifted out some bigger bits of bone and who knows what else, and transferred them to the urn and sealed it with silicone. I don't know where he got the strength for that. The picture of him doing that stays in my mind. Maybe actually having seen the ashes, touched them, helped us to know that they are not her and made it possible for us to put them into the ash grave in the memorial park. Sometimes I think back on that period and wonder how we made it through it, how we have managed to move on with our lives.

For us the memorial park was the way to go, for others like Tertia they are 'happier' to keep the ashes at home. Each person has their own way of dealing with loss and grief and what works for one may not work for another. We all have to find what works best for us. T, you keep those ashes at home as long as you need to. You will know when/if you are ready to move them.

Grandparents are survivors too

2008-02-29T16:45:00.000+02:00

Grandparents are a special gift
That God gives to each child.
Their love outshines the brightest star...
Their love can never be defiled.

Oh, but when a child becomes an angel,
Grandparents feel the pain and sorrow.
Beyond any pain they've known in life...
Or will ever come to know tomorrow.

For a grandparent holds a special love
For the child their child has had.
And, to lose what they hold dear...
Leaves them heartbroken and sad.

Their legacy is their grandchildren...
So how can they learn to survive?
Will the dreams of their tomorrows
Somehow be kept alive?

Yes, a grandparent is a survivor...
And life has taught them how to be.
For their wisdom, courage & love
Is carried from them to You & me.

Butterfly visits

2008-02-09T18:17:00.000+02:00

Remember I spoke about butterflies once before and how some people say they are spirits visiting? Well, we had a visit by a butterfly yesterday and once I mentioned that it could be Kendra visiting us, then Branston got keen on the idea and was saying that even it's colours were Kendra's favourites. He gets this from the Tigger that was next to her changing station I think. And the fact that the butterfly had a broken wing and could not fly properly was another similarity. I actually rescued it out of the pool where it was sitting on the pipe being dragged through the water. Then it was climbing all over us (see Branston's chest between the wrestlers). I put it onto this 'singing pig' which used to be Kendra's and it was quite happy to just stay there and not try and fly whereas before it kept trying to fly. This morning it climbed up my hair and I was walking around with a butterfly on my head! Weird! Anyway, I thought I would put it outside in a tree but it obviously tried to fly again and when I found it, it had died. I think it was too hot for it outside. Does anyone know anything about preserving butterflies? Maybe I can keep the wings or something. I know it seems silly, it was just a butterfly that got lost but if we want to live in our dreamworld and believe Kendra came to visit then why not?

Missing the wilderness

2008-01-31T23:06:00.000+02:00

Billy has written a very interesting and thought-provoking post relating to Emily Perl Kingsley's piece Welcome to Holland. I read this and I think about how myself and Deidre both had it read out during our baby's funerals. It is strange what mixed feelings one can have. I hear of all the difficulties involved with raising a special needs child yet what I wouldn't give to experience it. I know it is tough and I really feel for all my friends, real-life and online, but can't help wishing it was me. Sometimes I read about someone going through a particularly difficult time and almost feel relieved that I do not have to go through it, then immediately feel guilty for feeling relieved.

As I said, mixed feelings. I do believe that Billy has really captured the whole special needs experience though. It is a wilderness. Even though it was not long, my 11 months showed me how hard it can be, and through the special needs group I have met some amazing people who have battled the system all their children's lives.

Sorry for the late update but Christmas was a little empty. We stayed at home this year and bought an extra stocking for Kendra which I filled with a chocolate (which Branston ate) and a new angel ornament for my collection. I also bought a new angel for the tree. I've decided to make it a tradition, to buy a new angel for the tree every year.

Well, it's a new year and I can no longer say my daughter died last year. It is the year before last or 2006. That evokes some strange feelings. Amazing how strong those feelings of loss can still be sometimes. You know it is really a bit of a conversation killer sometimes when someone asks you how many children you have and you tell them about your baby that died. You know that 'pregnant pause' where nobody knows what to say. A few minutes ago everyone was laughing and joking and it seems a bit disrespectful to go back to that frame of mind a few minutes after I have told them. It happened recently at a braai we had here and you kind of feel almost bad for causing awkwardness. Sometimes I just say 1 child just to avoid that awkwardness. I used to feel really terrible about saying that but I know that Kendra would not feel like I was denying her, I have made peace about that.

It being a new year and all and with my fortieth birthday coming up I have deceided it's time to go all out to slim down to where I should be. I have used comfort eating as an excuse for long enough, it is time to do something about it now. In that spirit I decided to create a weight loss blog. Join me if you dare!!

Handling grief

2007-11-23T19:30:00.000+02:00

Tertia asked a few bloggers to do a blog post on how to help others to deal with their grief. Someone asked her what was the best way to help a friend deal with it. Everyone deals with grief differently and that is why she has asked some others to also give their point of view. The following people have also participated:

Cecily - lost babies
Snikolett - lost her husband to cancer
Alida - recently got diagnosed with cancer
Billie - micropreemie twins with some serious health issues

To help me get started I asked my friend who recently lost twins at 26 weeks for her thoughts. This is what she replied:
Q1: Did you find the way I interacted with you about your losses was ok for you or do you feel I could have done or said more or less?
A: Yes it was perfect. Also found it quite useful to chat to you because you could empathise as you have been through similar loss before whereas others who have not been through this don't know how to react or how we are feeling.
Q2: Are there things that other people did that you feel they should have done differently?
A: At no point did anyone offend or upset me so I can't think of anything that anyone did that they should have done differently. I found that some people only contacted us much later as they didn't know what to say or how to approach us at 1st, but I think this is normal as I've experienced and probably done the same with others in their time of loss. Now that I think about it - how do you feel about this question? When you lost Kendra I had no experience on loss so I probably wasn't as supportive to you as I could or should have been. I think that in most cases one would relate better and get better support from those who have been in the same boat before - but that's just my opinion.
Q3: It is hard when people seem to start forgetting after a while and everyone's life carries on as normal.
A: Agreed, and on this point I seem to also have got into this rut and it's quick to get busy and 'forget' about what's happened, although this will always be a part of our lives. It seems I may be dealing with this too well - which sometimes brings a sense of guilt to the table! This brings a question on... so how long should one grieve for? I know there is no right or wrong answer to this but the question is still there and the answer probably has an effect on whether one feels guilty or not.
Some general points / my opinions...
(1) One thing I have thought about the other day when I was writing some overseas Xmas cards, I signed them Love M, L & J with no mention of the Twins. I didn't know what was the right way - do you add the Twins names in or don't you... adding them in would acknowledge them but maybe make others feel uncomfortable or pity for us? ... not adding their names in makes it look like we have 'forgotten' them and not acknowledged them... I haven't read about this on any blogs - would be interesting to hear what others think on this point?
(2) One cannot say that getting over one type of loss is worse than another but I suspect that if you lose someone that you have 'had' in your life for a long time is much worse than to lose someone that you have only known for a short time i.e. the longer you have shared with someone the more memories you have of the person so you will be constantly reminded of that person.
(3) I found this on http://www.sapreemies.za.org/angels/angelsindex.html and thought it was quite good so you might want to use 1 or 2 ideas in your post.

A Loss For Words - Helping Parents Who Have Lost a Multiple by Amy E. Tracy
If you work with preemie families or belong to a multiples support group, chances are you’ll someday encounter parents who have lost a twin, triplet or other multiple. As someone who understands the crisis of premature birth, or the magic of multiple babies, you’ll want to help. But you may not know how. Based on suggestions from grieving parents and experts in parental grief, here are some suggestions:

Acknowledge the parents’ loss. When a multiple dies, parents not only lose a child, but the unique opportunity to raise twins, triplets or more. Recognize this loss. Some good things to say: "I’m sorry," or "I’m here and I want to listen." If parents named the baby, use the name. Even though one child is missing, parents often consider themselves fathers or mothers of the original set; refer to the survivors as the original number ("triplets," even if two survived).

Find helpful resources. Locate bereavement support groups and literature for parents who probably don’t have the energy to seek help.

Give a gift. When giving a new-baby present, take along a gift that acknowledges the loss. Thoughtful ideas include a figurine of animals or children that affirms parenthood of all the babies, a memorial tree for planting, or a donation to a bereaved parents’ group.

Think before you speak. Though perhaps well intentioned, avoid making comments that could cause painful feelings, such as: "At least you have another baby," or "It would have been too hard to raise quadruplets anyway."

Remember the baby. Send a card, small gift or call on holidays and anniversaries of the baby’s birth and death.

My response:

Q1 and Q2 - by including this in this post I am not trying to blow my own horn or anything I just thought it would help me to think about what I did and if it was deemed appropriate. My thoughts on this were that it IS difficult to know how to support someone when they are grieving. I know my friend is a very private person and will not show everyone how she feels so my approach was to let her know that I am here for her if she needs to chat about it and to offer my help in practical ways. To talk about how it was for me and to encourage her to talk about it and not bottle it all in. Sometimes I feel that I could have done more and maybe would have if it had been someone else - a different type of person.

I try and think back to how various people reacted to me and what worked and what didn't. Some friends phoned me up a few times to see how I was doing, some friends left comments on my blog, some sent emails and others never really talked about it. As the article above says, you need to acknowledge a person's grief and the child/person that has been lost. Yes, you don't necessarily want to talk to them in the middle of a party when they are obviously in a happier space, you have to pick your moments which can be quite difficult if you only see them in that sort of environment. So generally most of my friends and family handled it well although you will always get a few thoughtless comments especially after a while and you just have to think that not everyone is absorbed so totally in your loss. Recently some friends decided that instead of buying gifts for each other we would each buy a gift for underpriviledged children in an initiative called the Shoebox project. We were each given the name of child to buy for. My child was a 2,5 year old girl - exactly the age Kendra would have been now. A bit thoughtless? Maybe but I realised that they just took 2 lists of names and matched them together without looking at who was matched to who. Last year this would have been incredibly painful but now it is a bit easier to deal with. I suppose I could have swapped with somebody but I bought the gift and survived.

Which brings me neatly to Q3. There is no end to grieving. It will never end. But it does change in nature. It gradually moves from being a sharp constant pain to a dull throb, many times suppressed to the point of not knowing that it is there but always under the surface, popping up at the oddest times. I did a post a while back where I talk about the nature of grief and refer to another blog where she expresses it really well. Check it out. I think the thing to remember is that you should not feel guilty about how you feel. You go through different stages of grief, sometimes it is raw and in your face and other times far away. You are dealing with enough without feeling guilty about it.

Ok, I think I am rambling a bit here and going off the topic. Going into talking about grief instead of advising people on how to help others with their grief. The points above by Amy Tracy are right on the money. Snickollet has raised some very good points on helping your friend in a practical way. I suppose it depends on the individual circumstances but I think this practical advice will be helpful no matter what type of a person you are.

When Kendra died we had people in the house all day the day after she died. Some people made us breakfast, some cleaned our pool. Some brought food, some brought drinks. I appreciated that people came around to just say sorry, even though they never normally visited us. The trick is to determine if your friend wants to talk about her/his loss or would rather be distracted. Sometimes you have to ask them outright.

As Tertia says in her blog, she sent a letter out to her colleagues (one of whom was me) after she lost Ben. To tell you the truth before she sent out the letter I was terrified of seeing her for the first time. I did not know what to say to her and thought that I might cry if I said more than 2 words to her. I bumped into her in the kitchen, just said I am very sorry and that was it. Thinking back on it I feel I should have said more but I just did not know what to say. I think that letter which she sent out actually made my return to work after Kendra died easier and for this I thank you T. There were a few people who seemed to be avoiding me and some who to this day have not mentioned Kendra, but generally people came up to me and said they were sorry, some just gave me a hug, some even sent cards or emails. That acknowledgement of the loss is a biggie.

Don't ever say 'it was for the best' or 'everything happens for a reason' or that kind of thing. I got quite a few of those and I really did and do not appreciate them. People say that especially when they hear she had a syndrome. Which is also something, by the way, which causes it's own grief. When Kendra was diagnosed I grieved for the little girl that I thought I had, the normal little girl. Any mother of a disabled child grieves for the child they have 'lost'.

Throughout this post I have talked in the feminine and only referred to mothers, but all of it applies to fathers as well. I only talk about the moms because I am a mom and most of the blogs I read are written by moms. Fathers grieve differently to mothers and are often left out of the 'consoling' process but don't forget the dads, they are just as heartbroken.

In conclusion please go here and read some more helpful tips on dealing with grieving friends. This is also a good site if you have lost a baby. I am sorry this was so longwinded. This is what happens when one doesn't post for quite a while!

Oh, one last thing, in response to point 1 above about sending out greeting cards. I have the same dilemma. Should I put Kendra's name on a birthday or Christmas card? Sometimes I do and sometimes not. Sometimes I think people will think it strange if I put her name on, maybe they will think I am in denial or something. But the more I think about it the more I think so what! Who cares what anyone else thinks? If I want to put her name on a card I will. She is still my daughter even if she is not physically here. And that is my last word for now. Please go read the other blogs mentioned above.

Hey, strangers

2007-11-22T17:21:00.000+02:00

I know, I have been very bad with blogging. Shocking in fact. But my excuse is that my FIL is staying with us (3 months now) and the computer is in his 'bedroom'/the study and he usually goes to bed quite early. I blog quite a lot in my head though, it just never seems to get to the computer. I could write up a whole blog post in the shower but by the time I get to a computer I cannot remember it. Anyway, besides that....

A HUGE BIG CONGRATULATIONS to Catherine and her family on the birth of little Myles. They have been through so much over the last 2 years they really could do with some happiness. I have been following Cathy's blog since May last year when I had just lost Kendra and she had just lost Travis. I have been really nervous every time I went on to her blog lately in case there was bad news. Strange how you can feel so connected to a stranger and feel so happy when things go right for them.

On the downside, I am adding a link on the right to Alida's blog. We were colleagues, then she became a client and now she has cancer. She was very supportive when Kendra died and it was quite a shock to hear of this. I must say that I like the last few words of her summary - 'my winning battle'. It is so great how positive she is and it sounds like her family are real troopers too. You go girl!!

Tertia asked me to participate in a combined blogging effort about grief and how we handle other people's grief. A few bloggers will each put our posts up on Sunday and link to each other so that you can get some different opinions about the subject. Join us then.

Goodbye Milo

2007-10-15T23:20:00.001+02:00

I am sorry to say that Milo did not make it. She had to be put down on Friday. The vet has sent tissue samples away to try and find out what poisoned her. I took Branston to visit her on Wed and Thurs evenings which I think was a good thing. He had a chance to say goodbye. He seems to be taking it quite well, a little bit too well maybe? I keep waiting for tears and statements of missing her. I think I took it harder than him. I don't know why it upset me so much, made me think of Kendra quite a lot. I don't know how a dog can make me think of my daughter, maybe it's just that there seems to be a lot of death around lately. Two of Branston's goldfish died during the past week as well. And the cat was vomiting on Friday too, but I think(hope) that was just hairballs - it is that time of the year.

I really need to get to the memorial park, the problem is that it is too far to go during the week so I will have to go over the weekend. Going there just seems to bring a sense of peace. The sadness is there too but generally it seems to calm the soul. Gotta get there, hope the weather is good.

Milo

2007-10-10T11:50:00.000+02:00

Branston's dog, Milo, is at the vet and it sounds like she is not going to make it. She has acute kidney and liver damage, they think she was poisoned. What am I going to tell my child? Does he really need this in his life at the moment? It was his birthday yesterday and he was so excited. Now I have to tell him that there is a good chance that his dog is going to die. Man, life is a bitch!

I am not sure if I should take him to the vet to see her or not. The thing is, last year his sister went off to hospital and he never saw her again. I don't know if that experience should be repeated with the dog. I know a dog is very different to a sister but he is very attached to her. We got her shortly after Kendra died. The vet says that Milo does not look terrible, it is all internal so his last image of her would not be of a sickly looking dog. Should I take him to visit her or shouldn't I? Any advice? I don't know if I will get any answers before the time comes for me to decide but I will let you know the outcome.

Update

2007-09-24T12:30:00.000+02:00

My friend Lucy has updated her blog with her story and some pictures. Have your tissues handy before you go and read her update. I still get all teary-eyed when I go back there. Lucy left a comment on my last post as a reply to everyone who had commented here. She asked me to post her response.

Hi Vannessa, thanks so much for all your posts and prayer requests and for your support. You are truly a gem and a pillar of strength. I can only admire you!
I feel much better now that I've managed to update our blog with our story and now that I've had a chance to read your posts.Thanks to everyone for their comments and encouraging words.There are a few points that I would like to mention re some of the topics and comments posted...

(1) There is no right or wrong answer ... and what works for one does not necessarily work for another so please accept the below as my opinion only and it's just what worked for us.

(2) At 1st when I heard about the www.nowilaymedowntosleep.org blog and objective of taking photo's of stillborns I was a bit sceptical but I can see how this works as the pictures here are gorgeous as the babies appear to be sleeping.
However, my humble opinion of this is that it is only appropriate depending on how old your stillborn was e.g. when they are so little they may not look normal or in a natural sleep state and I wouldn't necessarily then want a picture of my stillborn. I would rather remember them as being a perfect little angel instead of perhaps having a last memory of their 'imperfections' so to speak.
We chose not to see our little stillborn twin girl who weighed less than 200g and we have no regrets. We remember her as our perfect little angel.
We do have a few pictures of her brother who was born weighing 400g but he was born alive and these are treasured pictures.

(3) Pre-eclampsia is a very serious condition which can be frustrating as one doesn't necessarily feel sick. It's quite scary now to think that I could have died! One tends to get lost in the thoughts and discussion of stillborns and keeping your baby alive but without your life even if the baby makes it, you're leaving them without a mommy... so please listen to your doctors.

(4) Luckily for us we had the chance of saving one of our babies (even if it was only for a brief period) and the way to do that was with a Cesarian section. However, if both the twins had died before birth and although the doctors would have suggested a natural / vaginal birth in this case, then I would have still had the choice of the Cesarian route and this is what I would have chosen. The recovery for a Cesarian is pretty quick nowadays and for me it would have been much less traumatic to do this than have to deliver the 2 stillborns vaginally. Just thought I would offer my opinion as I see others differ with their comments re this topic.

(5) To be pregnant and to be able to carry full term and give birth to a live and well baby is truly a blessing and a miracle. Please do not take this for granted.

I must say I agree with Lucy. Everyone has to do what is best for them and what is best for one person is not necessarily the best for another. I must say I did push a bit for them to see the babies, whether they were stillborn or not, as I did not want them to regret not seeing them. But ultimately the decision was theirs and I am glad that they are happy with what they chose (if 'glad' and 'happy' are appropriate words at the moment, maybe 'at peace' is better). I am also 'glad' that the hospital kept the little girl's body so that she could in the end be cremated alongside her brother. Now both little angels will be together forever. They are going to be laid to rest in Durbanville Memorial Park which is where my little Kendra is, so they will be close to her as well.

Sad news

2007-09-17T09:43:00.000+02:00

Baby Chad did not make it. I cannot tell you too much more as it is not my story to tell, except that it happened on Saturday and they did get to hold him.

I cannot believe the feelings that it has brought back from last year. We were more or less expecting it even though we were all hoping against all hope that things would work out, but even so it really hit us. It was a rough weekend.

Baby Chad born

2007-09-13T12:17:00.000+02:00

Baby Chad was born this morning to Lucy and Mike. Their little girl's heart stopped beating sometime between Monday and Wednesday's scans. Baby Chad weighs 400 grams (14oz). That is a teeny tiny baby. Now he really needs those prayers. Apparently his growth from Monday to Wednesday was phenomenal and he is strong.

The doctors here answered our question about birth certificates. If a baby is stillborn and under 400g (14oz) then they are considered a miscarriage and are removed with the placenta, not requiring a birth or death certificate. For a baby over 400g they are required. Little Chad definitely needs a birth certificate, let us hope that is all he needs.

Now we not only have to pray for survival for little Chad but that he does not have health and development issues. I am not generally a praying kind of a person but whatever it takes, lets do it...

Send some prayers this way please

2007-09-11T20:29:00.000+02:00

I haven't updated in a long time and I think that is a good thing. I have only really used this blog to express my sadness, well, at least since March last year, and it seems to be getting a bit easier now. I do still have bad days and bad moments but have been keeping quite busy and by the time I get around to sitting in front of the PC I usually no longer have the urge to spill my guts as it were. Else I just don't have the time.

Today I do have something on my mind but I am hesitant to write about it because it is not about me but someone else. My good friend L had problems falling pregnant and eventually resorted to IVF. This worked first time around and we were all thrilled for her. It was twins. All was going well until the 22 week big scan where they do measurements and everything. They were not growing as expected and the placenta was not looking good. They are a boy and a girl but the girl is much smaller than the boy. She was booked off on bedrest and had to go back to check the heartbeats every week. Last week was only her 2nd week of bedrest and her husband was away for work so I took her for her checkup. We were so relieved to see 2 heartbeats but then he checked her blood pressure and it was very high. There was also protein in her urine. The doctor booked her into hospital straight away. It was only supposed to be for the weekend but now they say she will be there until the babies come out. It is pre-eclampsia. At 25 weeks pregnancy the little girl weighs under 200g and the boy about 450g.

The reason I am posting about this is twofold. I want to ask everyone out there to focus your positive energies on those babies, pray for them or whatever works for you. They really, really need some sort of a miracle to get them and L and her family through this with a positive outcome.

The second reason is that I am looking for input from those of you who have been through something similar. I have read a lot of blogs about loss and I could find more to read about on the Miscarriage, Stillbirth, and Infant Loss Blog Directory but I would not want to direct her to read through certain blogs at this point where there is still hope. She is really being extremely brave and I find myself putting on a brave face for her when I know how she must be feeling inside. We were discussing at what stage babies get birth certificates or death certificates. How does it work with a stillbirth so early? Should she see the babies if they have to remove them now before they are considered viable? She said she does not want to and on one hand I think maybe it is better that way, maybe she will get over it quicker but what if she regrets it later? In the end that is a personal decision and they will do what is best for them, it is just interesting to hear how it was for others. I even found myself offering to take photos of the babies for them. It would be really hard I know but it just seems like the right thing to do. I have read on this site about photographers who take pictures of stillborn babies and do not charge for it and was thinking that it would be a good thing to start in this country but I decided that I was not brave enough to do it. This is certainly not how I would want to get it started and I wish it was not necessary at all, for anyone. Another thing we were wondering about is that the doctors said that if they think they can save one of the babies then they will do a caesar but if they think neither will make it then she must have natural birth. Does anyone have any thoughts on what the differences would be psychologically if they say either way is ok medically?

Tomorrow they have another scan and will find out what the situation is. It is really not fair. Why should some people struggle so much to have a child? Please, everyone think about them and send all your prayers and positive thoughts to L and her babies in Cape Town.

Edited to add: see new post for update

Rainbows and things

2007-08-13T21:42:00.001+02:00

Here are some pictures I took from my car on the way to work the other day. (Finally managed to get all the pics up) It was a complete rainbow although I couldn't get the whole thing into 1 picture. Beautiful isn't it. Made it ok to be stuck in the traffic. Lucky for the traffic, actually, as I had time take the pics. I know it was just a rainbow and not a sign or anything but looking at it made me think of Kendra and just made me feel peaceful.

We went away for the weekend to a really lovely place a few hours away from Cape Town. We stayed in a house on a hill called Oppiekoppie guest house. Amazing views. It will be really nice in summer, a bit too cold to really appreciate it this time of year. There was snow on the surrounding mountains! But it was a nice weekend. Pity I had to work on Friday so could only go up on Friday evening. The others went up on Thursday already since it was a public holiday. Whenever we go away like this or do other things that would have been different if Kendra had been alive, I can't help thinking about how it would have been if she were there. Would we still have gone? What would we have done differently? Would she have been mobile enough so that I had to keep a constant look out by the fire etc?

She would have been 2 1/2 years old already. Though with the syndrome there is no guarantee that she would have been walking or talking yet. That is something that really gets to me sometimes. I want to know how she would have developed. I want to experience some of the problems that my special needs mom friends experience. Or my friends in the blog world. I was reading this the other day and then this. Ok it's a lot of reading but is the story of an amazing woman and the struggles she has gone through from losing one of her daughters in an early birth and then trying to deal with the problems associated with the other being born so early. I really feel for her yet I envy her at the same time. She has gone through such a lot but has seen the rewards of her struggles. I sometimes wonder why I was not given the chance to prove that I could deal with it, that I was up to the challenge. Did God/mother nature/fate decide that I/we would not cope? People always say that these special children were given to us for a reason. What then was the reason for taking some of them away again? Maybe it is better to believe that it was just random, that there is no God or other higher power looking out for us, because he sure as hell is not doing a very good job! Especially not with all the things one reads about on the internet and hears about on the news. I think shit happens and we just have to deal with it as best we can and that is it. No master plan or anything. That is easier to believe.

I was asked to give a talk at work about the special needs support group. I sent out an email to everyone at work looking for coke bottles and they have asked me to join them for a women's day lunch on Friday (a bit late for Woman's day but this is Cape Town) and give a talk on the group. To put it in South Africanese - I am kakking myself! I have never been very good at public speaking and this may just be emotional too. I don't think they realise that my daughter is no longer with us. Not that it matters to whether I speak or not. It will be good to let more people know about the group and maybe one day, when I get my ass into gear and establish a fund, I can get them to help with some fundraising. But most important there may be people out there who are looking for a support group like this. Funnily enough in a newsletter sent out today there was a link to a raffle which someone at work (in the Jhb offices I think) is having to raise money for his son who was born with a genetic disorder and needs a number of operations.

Lastly, I just want to say well done to my brother Ian and sister-in-law Sonja for getting their own blog up and running. For a bunch of bush babies you did a good job! Now we just need to get some pictures up!

Long time no post

2007-07-23T21:49:00.000+02:00

Well, it has been a while since my last post. Strangely I have not really felt the urge to post anything for quite a while. Is that a good or bad thing? I have actually had quite a bit to say on a variety of topics but since this is Kendra's World I don't really feel comfortable using it to air my views on other things. Perhaps I should start a new blog. Perhaps even an anonymous one. What do you think of that? Anonymous mainly because everyone I know reads this blog. Well, they all know about it, they don't necessarily all read it. And there are certain things one does not necessarily want one's family to read, you know.

Anyway, let's talk about babies. A BIG CONGRATULATIONS to Shawn and Linda on the birth of baby Ethan (look for Ethan Muller in link). He is gorgeous, so much hair! I got to hold him for a while on Friday night. Very bittersweet. I am surprised though how awkward I feel holding other people's babies yet with my own it always felt so natural. Anyway it brought back a few memories and did make me a bit broody, but not enough to convince me that I should have another one. It was also lucky for some that I was distracted with the baby as some very tactless comments were made in general conversation about how lucky someone was to miscarry because the baby had Downs syndrome. Actually the more I think about it, the more it upsets me so I will not think about it. It was just the way it was said that was rather upsetting.

Anyway, a question for those with blogs. Would you be upset if someone who used to link to your blog removed that link? It really should not bother me, it is probably because my blog has become rather boring of late.

Moving on... someone left this comment on one of my posts a while ago and I feel quite bad that I have not responded:
Hi there we have a 5 year old girl who has jacobsen's syndrome, we are looking to make contact with other families to share experiences of this disorder.If anyone is interested leave a contact source and we will be in touch.Thanks Jon and Caroline parents of lucy

Jon and Caroline, will you please send me an email (go to my profile for my email address) as I do have 1 or 2 email addresses which I can give you. If there is anyone else out there who would like to contact them or myself please send me a message.

Oh, by the way, I have recently discovered facebook. Still can't really see the fascination with it, but I am still learning how to use it properly. Anybody want to be my friend?

PS: anybody got any empty coke bottles for me. Go here to find out why.

Stuff

2007-06-20T21:57:00.000+02:00

We had a special needs group meeting the other night which was quite interesting. A dad of a boy, young man actually, with cerebral palsy gave us a bit of a talk about his experiences. His son is 26 now and lives in a home. The father is divorced and spoke a bit about the toll a special needs child takes on your marriage. There was lots of lively discussion and debate about putting these children into homes or not. Basically what I think it boils down to is that each family did what is right for them. For Ian's son, the home he is in is the best place for him. He is well looked after and has a degree of independence and Ian and his ex-wife (who I think is overseas at the moment) can rest easy knowing that he is happy. Sandy and her husband have kept Ryan (22 with CP) at home and have a helper to assist with looking after him. Ryan and some other youngsters with 'disabilities' have started up a bead business and are doing very well (more on that later). And that is what works for them.

I did find myself feeling a bit left out of the discussion a bit. I did not really have any questions for the guy and he kept saying I was very quiet and do I not have any questions and I just could not bring myself to say why I did not want to ask questions. Nobody had told him about Kendra. Silly how you can be perfectly fine telling people about Kendra one day and then the next keep avoiding the issue. Then the conversation went to how God only chooses special people to look after these special kids etc etc. I remember posting a poem about it once which someone read out at the meeting. The problem is that when I listen to that sort of thing the thought just keeps going around in my head 'Then why did he take her away from us so soon? Did he decide that we were not worthy parents after all? Maybe we weren't coping well enough? Why then?' I almost said it out loud too, just didn't feel like throwing a damper on things. Do I sound a bit bitter and angry? Yeah, well generally I'm not, just now and again it surfaces. Not to worry, I am fine. Am really questioning this whole God thing though. But let's not get into that right now.

We are going to visit my mom for her 60th birthday and my dad's 68th and I think they need a bit of cheering up. It is also Gathry's dad's birthday so lots of celebrations this weekend. My car has been in the garage for over a week now (yes, my new car!) with a leak from the heating/aircon system and I really hope it is fixed tomorrow else we will have a problem getting to PE and EL.

We had a meeting with Branston's principal today. He was telling us all about how they thought intervention was needed and he is sure the school can help us etc etc. Really, we have been telling them for 2 years now that something has to be done and only when we say we are taking him out of the school have they woken up. We will see what the remedial teacher has to say next term and give them till the end of the year. If they cannot help then it really will be time to move him.

Grief

2007-06-02T16:21:00.000+02:00

This grief is a funny thing. It seems to come and go like the tides. One day I will be perfectly fine and then there are other days when it just sort of hits me out of the blue - I have a daughter. My daughter died! She is gone forever. I can never hold her again.

I read a blog the other day where she describes so perfectly the way grief progresses. (Delphi, I hope you don't mind me borrowing a bit from your blog) . The first, I would say, 8 months after Kendra died were like being blanketed in thick fog. It weighs you down, slows you down and you cannot see through it. There are days when it thins out a bit and you can see a bit further and days when you can't see your hands. After 8 months the fog had lifted to a degree but I missed it, I wanted it back. It felt like if the fog wasn't there then I was forgetting. Well, I blamed this on the ADs I was taking so I stopped them (against the advice of professionals). I must say the first month was tough. That old fog threatened to overwhelm me. Now it has thinned out again, not lifted entirely, but I can see a bit further (at least as far as Table Mountain!). I still have my heavy fog days and moments (especially when around babies and toddlers) but that is fine, I don't want them to go away. I even have some clear days where the fog lifts totally but I know it is always there, waiting to roll in from the ocean and that is ok. There were also many, many days in the beginning where that fog turned to icicles and really pelted me with ice. Stinging, painful ice. That also still happens although the icicles are perhaps not as sharp now, though now and again a really sharp one does surprise me at the oddest moments.

The last photos

2007-05-09T16:46:00.000+02:00

These are the last photos taken of my little angel. Since I have finally managed to post photos I thought I would share them with you. It might make it easier for me to look at them. She was quite bloated from the drip. But this was still before most of the tubes and attachments that were added. This was still day 1 in hospital.

Butterflies

2007-05-08T08:27:00.000+02:00

A friend of mine, let's call her Dragonfly, has been seeing Kendra in her dreams. The first time she saw her walking with an older woman and was very excited because she was walking and the older woman said she is looking after her as I have other things I need to do. She had another dream more recently where she saw Kendra with the same woman but Kendra was a bit older and was running around and had pigtails. Some of you may not believe in visitations from loved ones in dreams but I think I do. I have read some very interesting stories about this. And I have always been rather sceptical of psychics and tarot card readers, but I had a tarot card reading done a while ago by a woman who also claimed to be a psychic. She also saw a little girl in pigtails running around. And a bunch of other things but I'll talk about them later. Something interesting that Dragonfly said Kendra told her in her dream was to look out for butterflies and to think about her a lot. Of course that I do already but interestingly enough, last week Monday I took Kendra's nanny to the memorial park (she had not been since we sealed the grave) and while I was busy with the flowers a white butterfly landed on the flowers and was flitting around from 1 to the other. It stayed for quite a while and then flew off. Interesting also because it is not butterfly season at the moment. I do believe my baby was saying hello from heaven.

Happy Birthday sweet little girl

2007-04-23T10:58:00.000+02:00

Happy Birthday my angel. 2 years old today! We should be having a party and inviting all your little friends, but instead we will be going to the memorial park with some flowers and balloons. Life is just not fair.

I took the day off work today. I was not sure if I would be up to going in to the office and anyway we have to go out to the park today and not yesterday or whenever it is convenient but today. I have not written anything up since the last post mainly because I have been trying to post some pictures but I really don't know what is wrong, I just cannot upload any photos. I even decided to get set up on Flickr so that I could put the photos there first and link to them but even that does not want to load my pics. I think there is some settings on my PC that are wrong. If anyone has any ideas please let me know.

Branston's Oupa is here to paint some murals on his bedroom wall and I would really love to post the pictures of the finished product on Branston's blog but I cannot even do that.

My plans for this morning were to drop Branston at school and come home and update the blog and then do some scrapbooking. Well, first I had to go and buy some cleaning stuff which took longer than I thought, probably because I bought more than I intended to and then came home and the people were here to fix the pool and then the dog ran away and I had to drive around looking for her (she eventually came back by herself!) so my morning is pretty much stuffed.

I don't think I ever told too many people that I went on antidepressants last year. Things just got too much for me and I just couldn't deal with this constant despair. So my doctor gave me some Cipralex and they really worked wonders. I felt much better able to deal with things, but by January this year I started feeling that I was dealing with them too well and not feeling as deeply as I should be feeling. Difficult to explain I suppose but I have been able to cover up my emotions very well. So that's great you say? Yeah, I suppose so but it just did not feel right somehow. Well, a few weeks ago I forgot to renew my prescription and for a few days after the tablets were finished, I did not have time to get to the pharmacy. Then I thought, well, I haven't taken one for 5 days and I feel fine so why don't I just stop now and not buy more. Well, let me tell you the effects of stopping only really kick in a week after one has stopped taking them. Physically for quite a while I was feeling very lightheaded and strange. Purely by coincidence Tertia did a post at about the same time about her problems with ADs and the link that she gave was quite useful (I will link to it later, my PC is acting up again).

Anyway, I am feeling things now, all right. March and April have become my least favourite months. I have been crying at the drop of a hat, well at least my eyes get all teary and then I try and hide it from everyone. And I have been so irritable. Poor Gathry and Branston get snapped at all the time for no reason. Hopefully things will improve soon. Roll on May. But then May is a very difficult month for some other people too. I read quite a few other blogs which is not a good thing to do over lunch at work because at the moment most of them are making me get all leaky, between anniversaries gone and coming up and sick children etc, I think I must only read blogs at night at home. And my memory is just terrible. One does not realise what a physical impact losing someone close to you has. It is as bad as pregnancy! I just cannot remember things! I certainly hope it improves over time.

My darling Kendra, I hope that you are having a glorious day up in heaven. I know that you have got lots of little friends there, I hope you throw a great big party for all of them. I try and imagine what you would have looked like today and if you would have started walking yet, and talking. I can't even look at another 2 year old and say you would have been like that. I have to look at other little girls like Charli and Tessa and just wonder.... Granny is putting some flowers by your photo at her house, just pop in there and say hi on your way to your party ok? She has finished her scrapbook as well, I will put some photos up when I can. Anyway, I love you my angel and miss you like crazy.

1 year today

2007-03-24T08:31:00.000+02:00

1 year ago today life as we know it ended.
1 year ago today my heart broke into pieces never to be whole again.
1 year ago today my son became an only child again.
1 year ago today my baby became an angel.
1 year ago today my little angel went to heaven.
1 year ago today.

What else can I say about that Friday? It was a scary day. Kendra's temperature started fluctuating madly around lunchtime I think. Then it dropped and she became very cold. They used this blanket on her which had hot air pumped into it to keep her warm. It was attached by a great big pipe to a machine that looked like a vacuum cleaner which made a bit of a racket and pumped hot air in. She was still moaning all the time. At one point and I still see this in my mind all the time, she opened her eyes and looked straight at me for a few minutes and I could see so much pain in those eyes. When I remember that look I can actually sit back and think that I am glad that she does not have to suffer any more. Such pain.

At about 5pm she seemed to be doing a bit better. Her temperature had stabilised a bit so I went and had some tea in the canteen with a friend. Then the doctor came and told me that she thought she was improving and that she was happy with her condition. They had finally pinpointed what they thought she had and the treatment she was getting was correct for what she had. It is called Haemolytic Uremic Syndrome and is apparently very rare in SA as it is more commonly found in the UK. Go figure! Trust Kendra to have another rare syndrome! We could probably beat ourselves up about where she may have contracted this bacteria but what would be the point. What's done is done and we will never know. Just as I could say it was my fault for taking her to Branston's carnival the week before in the cold wind and stayed much longer than I should have. That type of thing is pointless.

Anyway, the doctor left, happy that she would not worry over the weekend as she was happy with Kendra's progress. Little did she know. At about 6pm one of the nurses turned Kendra over into a different position and she seemed to be much happier. She stopped moaning and actually seemed to be peaceful for the first time all day. This is why I decided to quickly go home and have supper with Gathry and Branston. Poor Branston needed a bit of attention. So I went home and Gathry picked Branston up from school and went to KFC to get some food. I phoned my mom to update her and while I was on the phone with her my cellphone rang. It was the hospital. I will never forget that nurse/sister. Obviously she was stressed but she just made as if how could I not be in the hospital? 'Where are you? You have to come back right now. Your baby has taken a turn for the worse'. So I said goodbye to my mom (heaven only knows what she must have been thinking) , phoned Gathry (he had not ordered food yet) and rushed off to the hospital. I put on my hazards and went through a red robot to get there.

Gathry and Branston were already there when I got there but they could not go into ICU because of Branston. I went in but halfway across a nurse turned me around and took me out again saying that the doctor and trauma team were busy with her. They took us to a waiting room, then friends came and fetched Branston and it was just the 2 of us, waiting. That is the worst wait you can possibly have, when you know in your heart that the news is going to be bad but just hope against all hope that it will be ok. Well, it was not ok. After what seemed like a lifetime, the doctor arrived and said 'I have some bad news for you'. I just looked at him. I think I was thinking it must just be that she worsened or something, she can't possibly be dead! It is impossible. Not my baby. He then said that she had thrown up blood and then her heart stopped and they tried to resuscitate her for about 40 minutes. Then it started to sink in. She really was dead. We were in the waiting room for a while longer, I can't remember what else was said. Then I said 'I want to see my baby' and a nurse came and her and the doctor took us through. I still remember everyone staring at us because it was visiting hour and of course we were in a state. I feel sorry for the other people in ICU actually. It could not have been pleasant for them, but then ICU is not pleasant is it?

Kendra was in a little room at the end of the ICU ward with glass walls so you could see in and hear everything. They had curtained it off but did not close the door. My little baby was lying there on the bed, still with some tubes in her. The doctor removed them, I don't know why they did not take them all out when they cleaned her up before we came in. I sat holding her in that armchair for a long while. She looked so peaceful.

We phoned my sister and she came over. I asked her to phone my mom. Gathry phoned his parents. His dad was, by coincidence, in hospital in PE for a minor op. Then he had to convince his mom not to come down to CT until his dad was out of hospital. The nurses cam and asked us if we had a funeral home to call. Of all the stupid things! Like we normally keep the name and number of our chosen funeral home in our wallets or something. So they gave us a few options and we chose one in Bellville as there apparently wasn't one in our area (found out later that there was). They said that the funeral home would fetch her immediately, do we want to wait until they get there. Well, I certainly did not want to see them take my baby away. So eventually we left. Breaking the news to Branston later was one of the hardest things I have ever had to do. How do you tell a child that his beloved sister is not coming home?

It is amazing how the feelings of those months afterwards have come flooding back this week. I never realized how much better I have been feeling this year until those same old feelings came flooding back. And physically how it has hit me. I have been feeling weak, nauseous and tired all week. Maybe the stress of weddings and new cars had something to do with it too. But I think writing it all down has helped. Does it make a difference that other people are reading this? Would it be better to do it all in a private journal? I don't know. I think sharing is good, it's cathartic. Later today we are going to the memorial park and then we are having some friends over to watch world cup cricket (SA vs Australia, big game today). It might seem strange but I think we need to have something to take our minds off the day for a bit. Thank you for reading.

363 days

2007-03-22T22:35:00.000+02:00

The last days continued....(not for sensitive readers)

So, she was admitted to hospital. They put us into the isolation unit in the paediatrics ward, so we had a room to ourselves although we could see the child in the room next door whose parents, by the way, hardly visited him. I really hate it when you see that. I could never leave my child alone in hospital when they are so sick. Anyway, Kendra was put on a drip and as usual they battled to find a vein for the drip. She developed quite a temperature so I had to wipe her down quite a bit. I must say the nursing staff were very good. One of the nurses from the maternity ward even came to visit as she remembered Kendra from when we were there.

They came and did all sorts of tests, I can't really remember what happened when. I think it was the first night that they called in the specialist who had done her op(in 2005) to do a scan and they had to wheel her through to the radiology dept. They had to disconnect her from the room's oxygen supply and take an oxygen tank with. I remember the nurse disconnecting the drip and the doctor freaking out because he said they would have to redo the whole thing and she was saying that it was the type of drip that you can remove and put back without air bubbles. None of which put me at ease with the entire process, I must say, though I was inclined to agree with the nurse as I had seen them do that before. Anyhow, I spent a rather uncomfortable night in the armchair, waking up most times when they came to do stats.

The next day they did some more tests and then the doctor decided to move us to ICU. She said it was because they have better monitoring equipment there but I think that they were not letting on to us how serious it really was. And my poor little baby was so swelled up from the drip as they put so much fluid into her and had her on a really strong antibiotic. They still couldn't tell me exactly what was wrong. In ICU she had a catheter in and you could see clearly that there was blood in her urine. They also put a tube into her stomach to drain fluid as she seemed to have a build up of blood there too. I spent the last night in ICU on yet another armchair. That night I woke up in the middle of the night to see that they had called out the doctor on standby to come and have a look at her. I asked him then about her heart (he is a heart specialist) and he said it seemed fine. I told him that I was concerned that her heart could not take it since there is a risk of heart problems in Jacobsen Syndrome babies. He told me her heart was fine.

So she had tubes all over the show and I knew that she was in a lot of pain most of the time she was in the hospital as she would lie there and moan all the time. Anyone who knew Kendra knew that she was generally a very contented baby (except when camping and at parties, she was not too keen on those) and I believe had quite a high pain threshold as she did not cry a lot. So to hear her moaning constantly like that was truly heartbreaking. I just felt so helpless. My baby was in pain and there was nothing I could do. Yes, I did pester the doctor to increase her pain medication but there was a limit to how much they could give her.

I popped home each morning to have a quick shower and out at night to quickly have supper with Gathry and Branston but other than that stayed at the hospital the whole time. I left poor Gathry to sort out Branston and homework etc. and he also visited regularly so that I could take a bit of a break.

362 days...

2007-03-21T23:34:00.000+02:00

Yes, it is 362 days since my little angel left me. Left us, her family. Exactly a year today since she fell ill. Today was a public holiday. We went for a picnic on a wine farm this year, maybe hoping that being out of the house would make things easier. Well, deja vu, we spent the day with the same people we were with last year, very good friends who have always been there for us, especially immediately afterwards. So who better to spend the day with? Unfortunately the memories persist in coming back along with those rib-tightening feelings of loss and sadness.

The day (last year) began innocently enough. I was trying to get back into shape and decided to take advantage of the holiday to have a marathon session in gym so off I went, knowing the kids were safe in Gathry's capable hands. When I returned our friends were here having popped in for a surprise visit. So we convinced them to stay for lunch and we should have had a marvelous day. Then Kendra started throwing up and developed a bit of a fever. By the afternoon I decided to take her to the doctor and got the doc on standby (not her normal doctor but he knew her condition) to go into the surgery to check her out. I even put on the urine collection bag so that he could check her urine. I had a few spare at home for just this eventuality.

So we took her in (myself and Y) leaving the men to hold the fort. The doc said that Kendra had tonsillitis and prescribed some antibiotics which we picked up from the hospital pharmacy immediately. The urine sample had some slight sign of infection which he said the antibiotics should sort out. Except I could not get her to keep anything down, especially the antibiotics. I tried to give her plenty of fluids but she did not want anything and kept throwing up. I expected to be up all night with her but she actually slept through. Not unusual for her as she always slept through but a bit of a worry when she was sick.

The next morning I could tell that she was really not well as she was very limp and not looking so great. When I took her in to see her normal doctor, she took one look at her and said she was dehydrated and must be admitted to hospital immediately. And so began the last few days of her life and the start of a long period of hell for us. Little did we know that day what was in store for us over the next few weeks and months of our lives.

I have never really gone into much detail about those last few days on this blog and am still not sure how much I can tell you, mainly because much of it is a blur to me. Over the next few days I will be going back down that particular memory lane. Why, you may ask? I don't know. I think I just feel the need to relive it and maybe, just maybe, I can begin to heal. My heart will always be broken but maybe the band-aids holding it together will strengthen and more scar tissue will form and maybe one day I won't need band-aids anymore but one thing I know for sure is that the scars will always be there, maybe slightly less red and vivid over time but always there.

I wanted to tell you about my sister's wedding as well but that can wait for a later post, when I manage to post pictures again (still having problems with blogger) and this crappy time of the year is over.

I also want to say to Tertia how terribly sorry I am. I wish you did not have to go through this and experience those awful feelings again. I will be thinking of you tomorrow. {{{BIG HUG}}}

Group meeting

2007-03-09T23:10:00.000+02:00

What a busy week! My in-laws have been visiting the whole week and my mom came down on Tuesday for the Cliff Richard concert. So Tuesday night was Cliff Richard, Wednesday night I went to book club and Thursday night was Special Needs Group. That was rather an emotional meeting. We had a new member so we did the rounds and each told our story. I was fine until I was asked how I am doing now and then tissues had to be handed out. D had a very bad day between organising 3 operations in one, doctor's visits for one, emergency call from school for the other one and then a car which decided to roll back into 2 others. All in one day. Ryan (cerebral palsy, 21 yrs old) gave a lovely speech which had the new mom in tears. Her son was hit by a car last year and he is now brain damaged although they told her that he would not make it and he has amazed them all. M is pregnant and is waiting to find out if the baby has the same syndrome as JP. G also had a bad day but did not go into details. I think it was a support meeting in the true sense of the word.

Certain things came up in the meeting which I must remember to discuss sometime, specifically religion. It can be quite an interesting topic in a group like that. But right now it is hot, late and after very bad service in a restaurant I am going to go to bed. The next week will probably be quite busy as my sister is getting married on the 17th. Tomorrow night is her hen's party which promises to be a lot of fun. And the 24th is looming. I opened my diary of last year to today's date to write something down and in there were the details of Kendra's first visit to the Cherie Botha school. Kind of gets to you.

14 years!

2007-03-01T22:23:00.000+02:00

On Tuesday 27 Feb we were married for 14 years. Can you believe it? 14 years of ups and downs. Generally it has been a good 14 years, well except for the last year. We have been told that losing a child often causes marriages to break up but I can thankfully say that ours has gone from strength to strength. Oh, we have our moments but as time goes by we learn to deal with them better. Gathry has been my rock this last year.

And somehow the significance of the day had me in tears on Tuesday morning. Last year Kendra was here for our anniversary and now she is not. The previous year I was pregnant. So she has been around for 2 anniversaries. The fact that she is no longer here to celebrate with us seems to taint all happy occasions. And now I feel the anniversary of her death looming. Good thing I am going to be quite busy this month so will not have time to dwell on happier times or the happenings of last March. I cannot believe it has been a whole year already. That sucks!

PS: I upgraded to the new version of blogger and have now lost the picture of Kendra in my profile(well, lost the whole profile basically) as I used the same email address for the special needs group and it has taken that profile. So if things look a bit strange on the blog for a while don't be surprised.

11 months....

2007-02-23T19:13:00.000+02:00

Today Kendra has been gone for the same amount of time that she was on this earth. Kind of blows your mind. I've been thinking about her a lot lately but strangely there are no tears. I feel like there is something wrong as I haven't really cried for a long time. The pain has not gone away, maybe it has just gone too deep for tears.

Anyway, another topic. Please read this story by a mom who has just recently joined KIDS group (our special needs support group). - http://www.news24.com/News24/Your_say/Your_story/0,9294,2-2127-2128_2072111,00.html

January

2007-01-25T18:48:00.000+02:00

So far 2007 has not lived up to expectations. I won't go into all the details but I think I was expecting to feel different in the new year or something or was hoping things would go right. Well, some things are not so bad I suppose. My sister and Gathry's sister and his cousin are all getting married within the space of 2 months. Also a firend from my book club is getting married so I guess that makes it 4 weddings and a funeral. I don't mind more weddings but please no more funerals.

Speaking of which, Tuesday was very difficult. I took a tablet to calm me down beforehand but I am thinking that maybe I shouldn't have, maybe I should have let myself fall apart a little, I had very supportive friends with me. It was a beautiful service, the priest told little anecdotes and had a really good singing voice. I almost came unglued when they walked in with the coffin. So small. We all sang the song 'Jesus loves me' while they walked in. Just the first 2 verses, they go like this:
Jesus loves me! this I know,For the Bible tells me so.
Little ones to Him belong;they are weak but He is strong.
Yes, Jesus loves me!Yes, Jesus loves me!Yes, Jesus loves me!The Bible tells me so.
I thought it was perfect for a child's funeral. The tribute given by D's friend Lynet was also extremely touching. D asked her to also read out Welcome to Holland. Another tough moment.
At the end the priest took out some sort of instrument like a trumpet but not quite the same, I have no idea what it was, and played the tune to 'You raise me up'. That had us all in tears. It was so beautiful. Just like I always think of Kendra's memorial when I hear 'The Rose', I will always think of Meah when I hear that song.

We went to the house for tea afterwards and I had a chance to chat to D. She is taking it very well at the moment but as she says she is still in shock. It felet at the same time good and awful to be able to honestly say to her 'I know how you feel'. Good because she knows I mean it and I can try and help her and can understand a little, and obviously awful that we both had to go through it. This is not something you relish having in common with anyone. Anyway, I am glad I went, esp when I saw how she appreciated it. We (few ladies from the special needs group) are meeting next week with D for coffee (or something stronger if necessary). She also lives not far from where I work so I think we may go for lunch sometime too. I know I appreciated being able to talk to someone who has been through the same thing.

Anyway, some updates on my holiday. I flew to PE to fetch Branston. Shame, he was very clingy the whole week, 2,5 weeks was a long time for him to be away from his mommy. We drove through to EL with my parents to visit them there for the week. It was very nice to relax and not do too much. And, big surprise, my grandmother (dad's side) and aunt arrived out of the blue for a surprise visit. I have not seen them since I got married in 1993 so that was great. After they left I did some scrapbook shopping with my mom (spent way too much, shh dont' tell Gathry) and we spent a few days doing some scrapbooking. My mom has made the most wonderful scapbook of Kendra. I took some photos and will post some of them soon. We swapped ideas and little bits and bobs to use for our books. Hers was almost complete but then I gave her some new (well, not new, but pics she didn't have yet) photos so she will probably add some more pages.

Then we came back to our normal routine. On one hand I was glad to be back (missed hubby) but on the other it is a bit of a drag to have to start worrying about school and work and homework etc etc. Our New year's resolutions are to get organised (nowhere with that) and have some fun this year (working on that) besides trying to get fit, lose weight and all those boring things. I'll let you know how those work out.

I haven't been out to the memorial park to visit Kendra yet this year but then I don't really see it as visiting her because as her brother says she is in our hearts so we don't have to go anywhere to visit her. Out of the mouths of babes...

Oh, before I go, there was one sad moment (well more than one while scrapbooking) while we were in the scrapbook shop. There was a couple there with a little baby and while the mommy looked around the daddy and baby sat at a table to wait. When we walked past Branston started playing his hide and seek game that he used to play with Kendra. The little girl loved it, she was so cute. Branston told the man that he played this game with his sister and of course he asked how old she was. Branston had to think a bit and said 1 year old, then I told them that his sister had passed away. Just watching Branston play with the little baby made me so sad to think that he can never do that with his own little sister again. Life (or rather death) is so unfair. It really sucks.

Another farewell

2007-01-22T21:45:00.000+02:00

A very sad farewell to little Meah. She was one of our special children in our special needs group K.I.D.S. Meah passed away while in the hospital with pneumonia on Saturday. She was about 2 years old. Can everyone please spare a thought for Deidre and her family tomorrow. The funeral is at 10am.

It will be very hard but I feel that I have to go to try and give as much support as I can. Although I am not sure if I will be of any help to anyone. I will be giving more of an update of how 2007 has been for me later. Now is not the time.

Welcome to 2007

2007-01-01T17:31:00.000+02:00

A happy new year to everyone. May 2007 be a lot better than 2006. I am sure it could not possibly be any worse. Although when I say that I think about Catherine and how she may have said the same thing at the end of 2005 about 2006. To her and all the other blog writers (and others) who have lost babies in recent years, I hope that 2007 brings only good luck and happiness. Of course we will always remember our little angels with sadness and regret that they could not be here to share this year with us, but I am sure that they would want us to move on and be as happy as possible. Sometimes that is easier said than done but I am going to try my damndest (is there such a word?) to be happy and forget - not the past year as there were quite a few happy times, and not my baby as that is impossible, and actually one cannot forget the pain either as that is now a part of me so, no, not forget but just be happy.

And my husband left this comment to my last post and asked me to post it so here goes:

"Firstly, I would like to praise Vannessa on being a strong, wonderful, caring and inspirational mother and wife. We have been together for 17 years and never have I had one moment of regret. This year has been the worst and we can only be grateful that we have Vannessa’s strength and unique personality to support us. Thank you to my very special wife, partner and friend.

Secondly, Sitting at the Christmas Table having the whole Family there except my sister made me realise that we need to reach out to the parents with living kids to prevent devastating regret should they experience the death of a child. My sister’s kids where at the table without their mother or father because of divorce, family disagreements, etc, etc.

If you read this and know people who are neglecting their children maybe show them to one of these many blogs so that they can feel the heartache because they need to cherish what they have regardless of the irrelevant “situation” that they are in.

Thank you for the support you have given Vannessa and hopefully 2007 will be a better year for all.

Gathry

PS. Vannessa, I would like you to post this message."

Merry Christmas my angel

2006-12-28T21:50:00.000+02:00

Isn't it sad when the only new Christmas pictures you can post of your baby are these?
I miss you so much my little Kendra, especially now.
We all miss you.
You would have been 20 months old now. I wonder if you would have been sitting or crawling? I don't think you would have been walking yet but who knows? I certainly don't and I never will. I suppose it makes it easier to think that wherever you are now, you can run and skip and jump. I tell myself that when I am feeling sad, but the thing is I just don't know. I have to believe that I will see you again or I will go mad with the sadness of it all. I just miss holding you right here and now. Empty arms. They feel so very empty sometimes.
Your brother is visiting Ouma and Oupa and all your PE cousins at the moment so the house is very empty and quiet. I hope you are watching over him so he doesn't miss us too much. I know he misses you a lot.
Time to go before I get too sad. Ooops, too late! I love you my baby. Merry Christmas.

Sometimes...

2006-12-20T22:46:00.000+02:00

... you feel like you are really ok and are going to survive this. And then along comes Christmas. I am really not in the mood for Christmas this year. I have not done much shopping and am afraid my gifts are all going to be really sub-standard. I just cannot think what to get anyone. I keep thinking about last Christmas and Kendra being here. I have actually just been having a bad couple of days. We went camping this weekend and I really did enjoy it. Of course, like most family events I would keep thinking how it would have been different if Kendra had been there. Not better, not worse, just different. Then when I got back I had a bit of a downer, just a bad few days.

Last night we went to dinner at a restaurant where we had been before with Kendra. And of all the tables there, Gathry wanted to sit at the table where we sat with her last time. He hadn't remembered that we had last sat there with her and agreed to sit somewhere else when I said I didn't want to sit there. Strange the things that affect one.

We are going to PE to his family for Christmas. I know it is going to be a difficult Christmas without Kendra here but I suppose being away from home will be a bit of a distraction and Branston will enjoy being with his cousins. I probably won't update again for a while so would like to wish everyone a merry Christmas and a great 2007. For us, it just has to be better than 2006.

I would also like to wish Raichelle a happy birthday for yesterday and aunt Ethel for the 23rd.

Hi there Charli

2006-12-08T18:43:00.000+02:00

Remember Charli? She also has Jacobsen Syndrome and is now almost a year old. She had to have a huge operation recently to change the shape of her head. Here is an extract from the letter her mom sent me. We have been keeping in touch as I am really interested in seeing how Charli develops. I think it will give me a bit of an idea of how Kendra may have developed. Although I think developmentally they were/are quite different. Initially I was also able to give her mom some support/guidance or basically share experiences but now I think she has progressed beyond needing that as Charli will soon be older than Kendra got to. Isn't she gorgeous?

Before the operation.

After the operation.

Charli had her operation on Wed 8/11 to correct her craniosynostosis. It was a success and she is on the mend and we got to come home yesterday so she was out after 5 days but it was possibly the hardest thing I have ever been through. It was just so heartbreaking to see her so helpless and vulnerable and there was nothing I could do. Charli was admitted the day before and given platelet transfusions, then more during the surgery and afterwards. Besides a bit more than average blood loss (she lost 1L and was given 2 transfusions) it all went really well. She still has a lot of swelling and bruising but has good colour and no temps anymore. I was prepared to see a lot of swelling and bruising but nothing could have prepared me for how white she was, she was almost translucent. It gave us a big fright but that's all over and done with now.

I will send photos of her new little head. Originally they were just going to remove the strip of fused bone down the centre and 2 strips of bone from both sides of her head so that her brain would have more room to expand out. This would have meant that it would be a long time to see a result as her skull would have just grown around her brain shape. But amazingly the day of her surgery they decided to do the major op involving leaving the strip of fused bone and taking the 2 side plates and front plate out moulding it to a rounder shape then reattaching it (it took 5hrs). The plastic surgeon apparently did the same surgery on another Jacobsen's child a month ago and it was a success so they were confident Charli could be kept stable.So I guess the operation being postponed in August happened for a reason. Doing that op meant that Charli has the round result straight away and better still no more operations are needed. But I have to say after seeing what she went through I don't think I would subject her to more surgery anyway.

She is doing really well and is the strongest little girl. I tried to stay positive but it was always in the back of my mind that there was a chance of losing her and I just don't know how I would have coped. But you know what if we had have lost Charli I would have known she would have had a little friend named Kendra waiting for her in Heaven and that is comforting.

I was a little worried that Charli would lose a lot of weight and perhaps forget some of the things she had learnt but she is back to doing all her old tricks and only lost 20 gms she weighs approx 7.5kg. Charli has been sitting for a few weeks now without support, rolling, weight bearing and has 3 teeth. She loves her solids an prefers them to her bottles.

I was hoping you might if possible mention something on your blog site just so that other people with Jacobsen's kids know that with platelet transfusions it is possible to keep the kids stable for any surgery that is needed. The docs were very unsure of how to deal with Charli's situation because it is not very common.

Edited to add: Ok, I cannot get the captions to appear next to the proper pictures. Blogger is not that wonderful sometimes. But I think you get the idea.

Kendra's bench

2006-11-27T00:21:00.000+02:00

Kendra's bench and plaque are ready! The bench is in place. I have more photos which I will put up soon (when blogger stops giving me problems). We must still go and attach the plaque. We put Kendra's new website address on it which for the moment I will just link to the blog. But we still need to get hosting and find out how to link it etc etc and I don't want to put the plaque up until that is done. We thought that it would be a good idea to put the website address on the plaque so that if people are curious about the gorgeous baby, they can go and read about her. We also want to maybe use the website later on to spread more information about special needs children and make people more aware of them.

I hate that the only new photos I have to post here are of a grave and bench and plaque when I should be putting up photos of a nineteen month old baby girl. That sucks big time.

Congratulations

2006-11-26T23:36:00.000+02:00

Another cousin for Branston and Kendra. A big CONGRATULATIONS to my brother Ian and Sonja on the birth of little baby Savuti, born at 6:11am on 6 November (interesting number combination - 6:11 on 6/11!!). She was a healthy 3.28kg and is doing well. Sorry about the quality of the picture but they sent it to my phone and then I sent it via MMS to my mailbox.

Another set of congratulations to Tertia for her appearance on Carte Blanche tonight. It was a very good piece. T, I know I said I would do a review of your book here and I most definitely will, soon, soon.

The Special Needs group had a wonderful breakfast last weekend. It was great to have such good attendance. I did have a bit of a wobbly while holding Tammy's baby but I don't think anyone noticed as I passed her on very quickly and went to the loo to compose myself. She is 3 months old now and very cute. I think it was just the way she held my finger that brought back memories.

I have been holding it together quite well lately, almost too well I sometimes feel. I have had to tell a few more people of her death and have managed to do it without getting all upset about it. I suppose that great big rip in my heart is forming scar tissue. I just worry sometimes that the scar tissue is not very strong yet and will rip open again. But we will cross that bridge when we get to it, in the meantime I am doing ok.

Some pics of bench and plaque to follow....

Babies everywhere

2006-11-04T17:00:00.000+02:00

Sorry for being such a terrible blogger. I just have not being feeling like writing anything lately. It seems like pretty much everything has already been said. I still have ups and downs. I don't cry as much as I used to. I suppose that is a good thing. I need to get stuck into doing some more scrapbooking. I am having withdrawal symptoms. I think I will probably attend a class or 2. The shopping centre near us has expanded and they have a new scrapping shop which is doing classes.

Myself and Branston went for a walk around this new part of the centre yesterday and 9 people out of every 10 seemed to be carrying babies, generally girls. It was open season for babies. Now, generally I am ok with seeing babies but this was just so 'in your face' that it was just a bit much. Especially when I had just been asked by the mother of one of Branston's schoolfriends how my daughter was doing - 'She must be walking already'. I really thought all of them knew but obviously not. I found though that it is getting easier to tell people even when it catches me by surprise. Slightly easier but not easy, if you know what I mean.

I then went and dreamt last night of people asking me how she is. I think about 3 or 4 people asked me in my dream about her and I had to tell them what happened. Eventually it got a bit much.

This whole decision of whether to have another baby is also getting to me. We have talked about it and Gathry is not that keen for his own reasons. I think that I do have a need to have another baby but that is just it - a need for a baby but not necessarily a need for a child. It is difficult to explain. On the one hand, I want Branston to have a brother or sister (I actually don't mind which) but on the other hand, by the time they are old enough to play with him, he will be 10 or 11 and probably won't be interested. I think about the expense and work involved in having another child. The things that I want to do that we would have to put on hold. The thought that I am nearly 40 and I will be in my fifties during this child's teen years. What if there was a problem with the child and they needed lifelong care. Now don't get me wrong, I would happily have looked after Kendra as long as necessary and if I could choose I would want her back in a heartbeat. But knowing the challenges I would face do I want to risk it again? Do I want to risk heartbreak again? Some women whose blogs I have read, lost their babies and then went on to have a miscarriage. My heart just breaks for them. Can I go through that and come out in one piece?

On that note, I wish I could just dive into the internet and go and give Emma's mum a great big hug. Instead a big virtual hug to you, Emma's Mum. I am thinking of you and I hope others reading this will also send you and your family some love and support.

Anyway, Christmas is coming up soon. Without Kendra. She only had one Christmas with us but this Christmas is going to be a little bit empty (ok, a lot) without her.

Fixed

2006-10-17T22:58:00.000+02:00

I have fixed the comments and posted some photos of Branston's birthday on his blog. Thanks to those who let me know the comments were not working.

Happy Birthday Branston

2006-10-12T08:02:00.000+02:00

A big Happy Birthday to big brother Branston from Kendra.

Branston thoroughly enjoyed his birthday weekend. He had a party on a farm with pony rides, quad bike rides and tractor rides. The theme was Pirates and all the kids dressed accordingly. Then he had 3 boys for a sleepover on Saturday night. Well, don't think I'll be doing that again in a hurry! I have created a blog for Branston which is his very own - www.branstonmeiring.blogspot.com. I will be posting some photos of the birthday party there soon. I have been thinking that I need to focus on the present and future and stop thinking about the past and what could have been. Easier said than done, I know. And that does not mean that I want to forget about Kendra and that period of my life, but I cannot allow myself to dwell on it in a negative way or I will go mad.

One of the moms at Branston's party who I did not know said to me that she remembered me from some school do, I have a baby don't I? So I said 'Had a baby' but of course she did not get it and proceeded to ask how old the baby was. I think she thought I meant that she was older now and no longer a baby, so of course I had to tell her. I think she felt worse than I did. It didn't seem to upset me as much this time. I think I have been practising telling people in my head so that I don't get caught off guard and can tell them more easily.

I am busy sorting out the links on the right. Stay tuned for more blogs to be added.

I just want to thank those who have left comments to my postings. I really do appreciate the support and it all helps, especially during a bad patch. Special thanks to Susan from VA. Thank you for still reading my blog. I think that reading what someone else is feeling who has been through the same thing often helps us to work through how we are feeling. I often read blogs of moms who have lost babies. Sometimes it makes me sad, other times I feel better. And whether the baby died at or before birth or later on, those feelings are all the same. Some of us are lucky enough to have more memories of our little angels and I have wondered if that makes it easier or harder to deal with, but the answer I think is that nothing makes it easier. All of our experiences are unique yet the same.

Kendra now has a bench! I ordered a bench to be put by her grave so that we can sit there more comfortably when we visit. I have ordered a plaque to go on the bench. I will post photos once it is done.

.

2006-10-06T16:29:00.000+02:00

I am sorry for not doing any postings lately but I have nothing. I am empty. I don't know what to say that hasn't already been said. Been going through a bit of a bad patch lately. Will probably write about it sometime but not right now.

It is Branston's birthday on Monday and he is having a Pirates of the Caribbean themed party tomorrow. He is so excited. We were going to have it at home but decided not to since the house needs some fixing up. I am glad we made that decision as last year's party was at home and Kendra was there so maybe it will be better elsewhere.

24/9 - 6 months

2006-09-26T13:13:00.000+02:00

Thank you Mom for the flowers and lovely message. Love you.

K is for Kendra

2006-09-09T17:31:00.000+02:00

I made this as a little something to wear close to my heart that makes me think of my baby. It is made of art clay silver and we (a group of friends and I) attended a half-day course and all made some lovely silver jewellery. Neat, hey?

Edited to add: Please note that the time on these posts is not the actual time. The server where these things are stored is in the USA or somewhere and it does not keep SA time. It is actually 5:30pm now.

Another tricky question.

2006-09-09T16:58:00.000+02:00

Another Saturday, another tricky question. I went to the hairdresser today for the first time in absolutely ages. I mentioned something about my son and she asked 'Do you only have the one?' I really didn't feel like going into the whole story right then esp. with a total stranger. So I said yes. And then proceeded to feel really bad, as though I was denying her. So then I wanted to say 'Actually I have a daughter but she is in heaven now' but she kind of started talking about other things and to other people so I just kept quiet but it affected me so badly I was having hot flushes and wondered how nobody could notice how emotional I had become. But I seem to be quite good at covering up and aside from slightly teary eyes I looked ok. Anyway, had a strong cup of tea and felt a bit better afterwards.

Then I took Branston to a birthday party which was not too bad, I even played a bit of beach volleyball (well, attempted to). Then I was chatting to a lady about birthday parties and she said "oh, for your daughter?' and I said 'no, my son'. 'Oh, do you just have the one?' Well, what do you know. I think I just kind of changed the subject and moved off soon after that. Then the mother of the child whose birthday it was, had to express her sympathy and ask questions etc etc. and I could not get out of there fast enough.

So, all in all a delightful day! I have also had 2 dreams of Kendra in the past few days, after having only the one since she died. I was told to write down all the dreams I have of her in case I forget them so I hope you don't mind if I tell you all as well. Sharing is healing so they say.

Dream 1: This is the dream I had about a week after she died. She was lying on our bed but I knew that she was dead. For some reason her body had not been cremated and was returned to us. Then she turned her head, opened her eyes and looked at me. Then I woke up. That was a very bad day.

Dream 2: I had this dream on Thursday morning. I had stayed home with a migraine and was trying to sleep it off. I dreamed I was shopping with my mom and I was carrying Kendra around in my arms. We did a whole lot of shopping, they even gave me a chair to sit on while my mom paid for everything. Then it skipped to a bit later, myself, my mom and Branston were walking down a farmroad somewhere. Branston started telling my mom how I had been carrying Kendra and I said yes I was and my mom said something about having to accept that she is gone (in the nicest possible mom-like way) and it was as though it hit me like a ton of bricks. I stopped dead in my tracks, Branston had wondered off somewhere, and it was like I couldn't stop this terrible sound coming out of me, I can't explain it. I woke up and was so sure that someone must have heard me but it was all in the dream.

Dream 3: This dream was this morning and it is mostly quite vague. It was almost like current day with no Kendra and we were out doing things. I think we were on holiday. I remember walking past some restaurants and trying to decide where to have lunch. Then we got to the place we were staying and suddenly realised that Kendra was in the bed there and we had forgotten to change her and feed her that morning. She was lying there quite happily, just sucking on her hand but was soaked through. A really awful feeling. How could we have forgotten our baby?

I suppose each dream is an indication of my mental state and one could analyse them to death but I won't right now. Just needed to write them down.

How is your baby?

2006-09-04T21:54:00.000+02:00

How does one answer this question? How is your baby? Someone asked me this at a party this weekend. Obviously someone who does not know us very well. We see them every few months over dinner with lots of other people and talk is always general, not of a personal nature. I did not even know that they knew I had a baby. It knocked the wind right out of my sails. "Well, um, well, MY baby? My daughter you mean? Um, well you obviously don't know. Um, she died in March this year. 5 months ago. Umm........ yeah.' I have gone past the use of the phrase 'passed away'. Why should I try and make it sound any different than it is. She died. Deal with it. We have to every day.

Anyway, that was a bit of a conversation stopper. Although the others in the group I was standing in kind of covered up quite well with slightly high pitched light chatter, trying to cover up an awkward silence. I felt quite sorry for her, she did not know and why should she? But that is the kind of thing that gets to you, these things that hit you out of the blue, when you are trying to just have a bit of a good time for a change.

Also at this party was someone else who had a baby a week before I had Kendra. Her baby was there too, being ultra cute and walking around all over the show. Also quite tough. I am pretty sure that Kendra would not have been walking yet or even sitting for that matter. So it is difficult to look at another baby girl of the same age, yet maybe not as difficult as it might have been if I thought that Kendra could have been there playing with her, running around. We don't know what she would have been doing at 16 months. Will never know.

Spare a thought for baby Joseph's family. They are going through a tough time at the moment and I think of them a lot. My heart aches for Carole and the whole family.

Also some belated birthdays. I did not wish Rathla happy birthday because they do not have a computer at home so I doubt they will ever get to read this but anyway, someone can print it for him..... HAPPY BIRTHDAY RATHLA!!!!!!

Happy birthday Joanne for the other day. I hope you had a great day. Sorry a bit late.

Please sign my guestbook

2006-08-24T22:58:00.000+02:00

Who are you? I would really, really like to know who reads my blog. Even if you don't want to tell me your real name, I am interested to know why you read what I write. I never thought I would ever write stuff that other people would want to read about. But here we are. Me writing and you reading, because of one little girl who is really being missed today, 5 months after she left us physically. But I felt really close to her today, like she was here with me, almost comforting me. No tears yet for the 24th but there is still bedtime.

So please leave a comment, telling me who you are and why you read my blog. I would really like to hear from you all out there in blogland.

Congratulations

2006-08-22T08:41:00.000+02:00

Happy Birthday to Kayleigh!

Congratulations to Tammy, Dave and Connor on the birth of little Courtney. She is gorgeous! I will put more pics on K.I.D.S group blog later.

Other blogs

2006-08-15T22:36:00.000+02:00

First of all, some pictures which I modified. I removed the background and just made it all one colour. Not too shabby if I say so myself. The top picture is of Kendra at about 1 1/2 weeks old on my mom's arm. The second one is her foot with her brother's. Also taken at the same time.

I have been reading a number of blogs over lunch and in the evenings. I hope they don't mind me mentioning them here. One of my favourites is a colleague and friend of mine, Tertia. Her blog, So Close, started off as her journey through infertility and was a way to express her feelings during this time. Now, after many, many sorrows and difficult paths, she has been blessed with a gorgeous set of twins. I read her blog because she is witty, insightful and basically tells it how she sees it. If swearing offends you then don't read it, but I find it refreshing, plus there are pics of the beautiful babes in it. Tertia also suffered losses on her path to becoming a mom and it has been good to speak to someone who can identify with how I feel.

I don't know why I am so compelled to read blogs written by women who have recently lost babies, maybe it is that I can identify with how they feel. I read their blogs and think 'Yes! that is exactly how I am feeling!'. Sometimes it can be a bit depressing and make me sad, but more than that I want to see how they are doing, not because I want to read about their suffering but because I want to see how they are coping. Sometimes they will have a very sad post, sometimes negative and sometimes hopeful. I like to sometimes leave a comment in the hopes that it will help a little but I know that there is not much that does. These are the ones I read most often:
http://everythingisundercontrol.blogspot.com/
http://missingspeedjr.blogspot.com/
http://allaboutbabydrew.blogspot.com/
http://thejourneyfromhere.spaces.live.com/ (This one is a bit different as the baby is not yet born. My heart just aches for that family.)

I also read about some very special little children with special needs. I love to read about their progress and think about how Kendra would have been doing now. These are my favourites:
http://www.micropreemietwins.blogspot.com/
http://belovedmonsterandme.blogspot.com/
http://www.indecisivegirl.blogspot.com/
http://babababies.com/view/view.cfm?SiteID=31032
http://cerebralpalsybaby.blogspot.com/
http://www.lebers.co.za/index.html

Then there is the world of infertility to which I have been introduced by Tertia. Although I cannot identify with these women as I fell pregnant fairly easily, I have come to understand a small part of what they go through by reading Tertia and other's blogs(and soon to read Tertia's book).
http://nobs2.blogspot.com/
http://thenakedovary.typepad.com/the_naked_ovary/
http://alittlepregnant.typepad.com/
http://julia.typepad.com/julia/

And when I need some non-child related reading:
http://dilbertblog.typepad.com/

If any of the above people should read my blog and object if I put links in on the side to yours please let me know.

I would also like to know who is reading my blog and why. But I am going to create a separate post as a guest book as I have seen some other clever bloggers do so hold on till I do that and then please tell me who you are. But not yet!! Wait!

It's hard

2006-08-13T22:54:00.000+02:00

It's hard to believe that a person can shed so many tears.

It's hard to believe that it's only been 4 1/2 months.

It's hard to believe that the world can continue like nothing happened.

It's hard to believe that some people expect you to 'get over it'.

It's hard to believe that I will never get over it. And I know I won't.

It's hard to believe that the world was once sunny and bright. It seems very dull now.

It's hard to believe my little angel would have been 15 months old already.

It's hard to believe she is gone.

It's just hard, that's all.

Something else...

2006-07-29T11:35:00.000+02:00

I thought I would write about something else today. I watched a program on TV the other day about violence in schools . It scared me. How do you protect your child from other children at school? It has gone beyond 'normal' bullying and seems to be much more violent. I used to hear the odd story about a child that was stabbed on the Cape flats or somewhere else and I would think that something like that will never happen where I live. But it is happening all over. Middle class and more affluent areas are affected just as much as the so-called poorer areas. Branston is in a private school because we thought that he would have more opportunities, be more protected, have a better chance in life. But the kids in private schools generally have more money to spend on drugs and other things. I am not saying that all kids in private schools use drugs but you cannot say that there is less of it there than in public schools.

I blame TV and movies for the violence. Ok, so we shouldn't allow him to watch violent things but do you know how hard it is to find non-violent programs on TV? Even cartoons are violent. I mean, are Tom and Jerry not always trying to beat each other up or eat each other? On TV the heroes can get shot or thrown off a building and walk away from it. We always try and explain to Branston that the things he watches on TV are not real and he must not try anything like that at home. But what about other kids? We have no control over them.

It's when I read these stories and others about murder and rape of young children that I start thinking maybe Kendra had the right idea. She is in a better place and will never risk being exposed to all these bad things. Don't worry, I am not thinking of joining her and I do know that there is a lot of good in the world eg here. I do just worry sometimes about what is going on out there.

4 months

2006-07-24T22:03:00.000+02:00

Isn't it strange how 4 months can seem like a lifetime? 4 months is a third of a year, half a pregnancy (well, mine anyway). On the one hand the year seems to have flown. I can't believe it is the end of July already, yet the last 4 months seems like an eternity. 4 short, but oh so long, months since I held my baby in my arms. Today has not been a good day, as you may be able to tell. And then this evening, for the first time since AK (after Kendra), Branston wanted to read to her when he did his reading homework. He used to do his reading while I gave her her bottle. So I took her picture down and put it on the table so that he could read to her.

On a different note, we had a lovely holiday. We took 2 weeks off during the school holidays. For the first week we went to Sun City. This was a gift from some very kind people. You know who you are. We cannot thank you enough. It was great to get away and spend time together without worrying about buying milk, feeding animals, cleaning house etc. We were able to spend time together and get used to being a family of 3 again. Branston had a ball. So many new experiences for him. I did have a few moments of sadness when I saw people with babies but we kept pretty busy so there was no time to dwell on what could have been. It was a great week.

The second week we spent at home painting Branston's room - doing our own extreme makeover! Well, not that extreme and we haven't finished yet but it is looking qutie good if I say so myself. I don't know if I have energy to do the rest of the house though, as is our intention. Painting is quite hard work, although rewarding. I am glad that we didn't get around to doing up Kendra's room yet as I don't think I could have handled going into a room done up for her. She slept in our room and her clothes were in the study.

I have started her scrapbook. I have only done 1 page and don't really know what I am doing but it is interesting and I will learn as I go along. I will have to post some pictures of the pages as I finish them.

I have been considering stopping this blog. I have not felt like writing up anything for a while. I mean, who wants to read about my grieving. This was supposed to be a blog to keep people up to date about Kendra's progress. Maybe I should start a new one. I want to start a separate one for Branston anyway. Any thoughts? I can see by the comments that it is still being read and I thank you all for that and for all your comments. Strange as it may seem, they do help even when I don't know who they are coming from. So maybe I should carry on. I will see how it goes.

I would like to dedicate this song by Celine Dion to Kendra. I was going to have it sung at her memorial service but for some reason I didn't. I can't remember too much about my thinking back then. It is called Fly and could have been written for Kendra.

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set

But I won't forget
Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

Finally

2006-06-25T00:20:00.000+02:00

At long last Kendra's plaque has been completed and she was finally laid to rest. Exactly 3 months to the day after she died. We (just the family and the nanny) went out yesterday morning so that we could place her ashes into the grave and have it sealed. The plaque/gravestone is beautiful. The picture of her came out really well. There isn't really much more to say. Rest in peace, my beautiful baby.

She was laid to rest on her granny's birthday. Happy birthday Granny. And happy birthday to Grandpa for tomorrow.

Birthdays and other things

2006-06-21T22:59:00.000+02:00

This is a picture of Kendra and Branston and their cousins from PE at Kendra's christening. Today is a special girl's birthday. Happy birthday Vangie. Sorry we did not phone you. I hope you had a super day.

Another happy birthday goes to Oupa for tomorrow. Happy birthday Oupa. We hope you have a wonderful day.

A while ago Susan and Michael left a comment on Kendra's World saying that they were expecting a baby with Jacobsen Syndrome. I sent them an email but have not heard from them so do not know if they received it or not. If you did receive it then please let me know. I hope things are going ok with you and the baby. If not then please send me other details. I would love to contact you and share experiences and help you in any way I can. Please do not feel hesitant because Kendra is no longer with us. I really would like to hear from you.

To my sweet Kendra

2006-06-11T23:48:00.000+02:00

I miss you so much. I think of you all the time. Not an hour goes by when you are not in my thoughts. Is that wrong? Is that obsessive? Some might think so. Silly little things make me think of you.

Whenever I use Spray and Cook on the pans when cooking I want to go and do it by the window because that is what I did when you were watching me cook. Whenever we go anywhere I keep thinking that I don't have everything because I am not used to taking so little with me. With you here, it was nappies and bottles and changes of clothing etc. When I drive past Baby City and the other baby shops on the way to your brother's school I still think of going in to buy you stuff.

When my friends are all bleary eyed from lack of sleep because their baby is teething, I wish I could have no sleep for that reason. Or have to wake up at 6am after a party. Gosh, I really love my sleep and here I am wishing for less of it!

I don't like it when people talk about hospitals and doctors because it makes me think of your last week. I was at a talk a few weeks ago where the speaker was a doctor and he was joking about heart monitors and flatlining and stuff. I almost left the room. I think I hyperventilated a bit. Nobody noticed, I don't think. I keep thinking about the last time we made eye contact. You looked straight at me and I could see so much pain in your eyes, yet I couldn't help you. I felt so powerless. Yet that helps me now sometimes because I know you are free of that pain, of any pain. At least you did not have to continue suffering.

I sometimes wonder if you would have been sitting yet. You were very close. You were just starting to roll over nicely, with a bit of encouragement. We have been wondering if we should have another baby. I don't know, Kendra, you are a hard act to follow. Nobody could take your place and I wouldn't want anyone to. Time will tell.

I must go to bed now, my angel. It is late. I can't say I will dream of you because strangely I have only had one dream of you since that day. It was probably too upsetting for me so hasn't happened again. Good night, baby doll, I love you.

Kendra and friends

2006-05-28T09:58:00.000+02:00

I found some pictures which I though would be nice to put up. Kendra with aunty Sonja, cousin Franci, and friends Amber and Hayden. She was loved by so many. Little Amber still talks to her and prays about her.

Branston climbed into bed with us early (very early) this morning and started talking about her. Says his main memory is of her laughing. I am glad that he is talking about her more. We have not pushed him and have let him grieve in his own way. But children are so different to us. I think he will be ok. We will all be ok. I have been having quite a few downs of late and those feelings will never go away but we have to move on and concentrate on our lives.

PS: Branston and Kendra want to wish their Ouma happy birthday for the other day. I wanted to do a posting on the day but it was a bit hectic (emotionally) last week.

Today

2006-05-24T22:56:00.000+02:00

Today was not as bad as I thought it might be, but then I find that when you have prepared yourself for feeling bad, the reality is not as bad as what you were imagining. I went to a talk on ADD and ADHD children tonight (apparently Branston's problem). Firstly I was nervous because it started at about 7:30 and you know what happened at about that time 2 months ago. Secondly the main focus of the talk was about the effect of ADD on siblings. But I thought it might help to meet some people with similar problems and I also told Y that I would go with her. I think being amongst people helped me to try and switch my mind off and try and focus on something else. It was ok.

Now I am trying to download my blog to make sure that I do not lose any of it and I also want to keep all the lovely comments that people have made. I don't know..... I followed instructions but it does not seem to want to work. The blog should come up with a different format and with all posts and comments together on one page. But that is not working... for now. It will probably come right in the night and look a total mess tomorrow. So just excuse it if it looks funny, I hope I can get it back to it's proper state again afterwards.

2 months

2006-05-23T23:28:00.000+02:00

Tomorrow it will be 2 months since my baby died.

I have been going through a bad patch where I just don't feel up to posting. Even now, it is too difficult. I started seeing a grief counsellor. She says I am too calm. I said I have to work, look after Branston. If I start being 'not calm' then I don't think I will stop very easily. It feels almost like I am holding myself together with string. I just hope that string does not snap.

Strange how 2 months can feel like a lifetime.

Happy Birthday Nanny

2006-05-15T22:19:00.000+02:00

This is a picture of my gran (or Nanny as we used to call her) with Branston when he was a baby. She passed away is September 2001 shortly before 9/11. That was a bad September. First my gran passed away, then 9/11, then Gathry had an accident and broke his collarbone then my brother and his wife were retrenched (they were in the tourist industry in Botswana and after 9/11 it suffered big time).

But now when I think of Nanny, I think of Kendra with her and I know that they are looking after each other.

Happy Birthday for tomorrow Nanny. I know Mom has put some flowers next to your picture in her house and that your picture now shares a table with Kendra's picture. I wish you could have been here to meet Kendra during her short stay with us but now she is with you.

Mother's Day

2006-05-14T11:11:00.000+02:00

What a special day this was last year. I had 2 children then. Still do, but one is no longer here with us. I cannot hold her in my arms. But I cannot say that the day is not special either, my husband and son have gone to such trouble to make it special for me. So it is special, just in a different way. My son made me a card on the computer, from him, his dad and his sister. He also chose the gifts himself including a locket on a keyring with space for photos. He also gave me a picture which he coloured in which I know took a lot off effort as he does not finish things easily (that is the topic of another day's discussion). And we are going to the Moscow circus this afternoon, which took a lot out of Gathry, not because he does not like the circus, or that it was so expensive, but because he believes it is a bit of a ripoff at that price, plus he is missing the Grand Prix!

So I want to say, my darling Kendra, this is a special day but would be so much more special if you were here with us. I have really been missing you a lot these last few days. A lot.

I took Branston to the doctor the other day and when we were paying, there was a lady in the waiting room holding a baby. It must have been about a month old. I so badly wanted to hold that baby, I think she must have thought I was a bit strange as I kept looking at the baby. Strange that seeing other babies did not seem to bother me too much before, now, just as I thought I was having lots of good days, I find myself looking at babies all the time and feeling really sad. I suppose it is part of the cycle of grieving but damn, it is hard.

I also want to say happy mother's day to my mom and Gathry's mom, who no longer have mothers to phone today but I know that Kendra is with both her great grandmothers, keeping them company so none of them are alone today. I also want to say happy mother's day to Tammy who has been through a really rough time lately with Connor in and out of hospital. I am thinking of you, my friend, and am sorry I have not been able to help you much but am a bit of a basket case myself. I am also thinking of all the other moms out there who have lost their little ones. I know exactly how hard it is, but we have to get through it for the sake of those others who love and depend on us. Anyhow, time to dry my tears and go to the circus.

Meet Charli

2006-05-10T19:11:00.000+02:00

This is Charli. She is almost 3 months old and also has Jacobsen Syndrome. Charli's mom found us through Kendra's blog but unfortunately only after Kendra had passed away. I wish....... well, it would have been so nice to have the 2 of them grow up "together" and for us to compare notes about having a JS baby. They may never even have met because Charli lives in Australia, practically the other side of the world. I have asked Charli's parents to keep me updated on how she does. She is the first baby with JS whose parents have corresponded with me (the others have all been much older children) and I am very interested in her progress.

Charli's breakpoint (section of chromosome where breakage occurs) is 25, Kendra's was 23. They have many similarities, yet Charli seems to have more physical problems, but from what her mom said is progressing quite well with her milestones. Her blood platelets are extremely low as were Kendra's although Kendra's count did seem to come right after a while, only dropping when she was ill. So hopefully Charli's count will also improve with time. The plates in the back of Charli's head have fused prematurely which is a problem as she will require surgery to correct this. We were worried about Kendra's head shape as well but she checked out ok.

Charli also has ptosis of her left eye and they are still waiting to see what has to be done about that, possibly also patching. The physio is happy with Charli's progress and says she has good muscle tone and should do well with a bit of physio. If there is anyone out there who wants to get in contact with Charli's parents they can do so through me. They are very interested in corresponding with other JS baby parents.

On a sad note, Kendra's nanny finished working here yesterday. She has found a good job with a single mom who has a 3 month old boy. I am very happy for her but I think that may be part of why I have been so sad these last few days, much more emotional than usual. Cot is down, baby clothes and bottles and stuff packed away, now nanny gone. Slowly all signs of Kendra having been here are disappearing. Now all that is left are the memories, the photos and the heartache.

I was given a lovely memorial book with a couple of photos and lovely words in it and I plan on learning to do some scrapbooking so that I can fill it with all my best photos of Kendra. I dropped a few hints to my friends and received some lovely scrapbooking things for my birthday so now all I have to do is sort out the photos and find a spot to work. Of course I will have to do one for Branston as well so I think I will be busy for quite a while.

Numbers

2006-05-05T18:12:00.000+02:00

Yesterday at exactly 3 seconds and 2 minutes past 1am, if you put time first you had interesting sequence of numbers - 01:02:03 04/05/06. This got me thinking about Kendra (most things do) and her birthdate. She was born at 1am (ok maybe not exactly but thereabouts) on 23 April 2005 which gives you 1:00 23/4/05, or 12345, another interesting sequence. She was also born on 23/4 and died on 24/3. And for good measure, last year my birthday was on 05/05/05. Interesting!!

Speaking of which, today was a strange day. My plan, 2 months ago, was to take Kendra to the therapist at the Downs Syndrome school. We had an appointment for 9am after which there was to be a talk for all mums whose children attended the home program by a specialist of some sort. I was going to take Kendra's nanny with. So I was planning to take the whole day off and just relax for the rest of my birthday. But now, it was just another day. I went to work as usual but could not help thinking about what my plans had been while driving to work. Not a good idea to drive and cry at the same time! Luckily I got there without incident. But otherwise, my husband and son spoilt me with gifts and a lovely home made card. We are going out tonight so hopefully that will cheer me up. Although the weather is really lousy - huge storm going on out there - maybe it would be better to stay at home in bed!

By the way - HAPPY 18th BIRTHDAY TO CARLA.

Happy birthday to Ryan

2006-04-25T21:56:00.000+02:00

On a more cheerful note than recent posts I would like to wish Ryan, a young man with cerebral palsy, a very happy 21st birthday. Please go to the KIDS blog for some pics and more info.

When Sandy, Ryan's mom, came to deliver the invite to Ryan's birthday party to me she was very upset at being so happy when I was so sad. I just want to say to Sandy that you must not feel guilty at rejoicing while I am so sad. You must be proud of your family's achievements. I am happy for you and you deserve to be able to celebrate this occasion. You have done an excellent job raising Ryan to be the best that he can be and he is a remarkable young man. Well done to all of you.

1 month and counting

2006-04-24T22:06:00.000+02:00

It has been exactly 1 month since our Kendra left us. I think I may need a sleeping tablet tonight. A month ago at this time I was sitting in the hospital holding my baby for the last time and wondering how I was going to tell her brother that his little sister was gone. Hard to believe how much one can go through in a month.

Yesterday was not too bad. We did some shopping, cleaned the house, went to the memorial park and had some friends over afterwards. I just want to say thank you to those who joined us at the park and to everyone who came around afterwards, even if only for a while. Your love and support mean a great deal.

We changed our room around last week and took down the cot. It was hard. I still have not packed away all her clothes and other things like medicines and nappies etc. I suppose I should sometime, maybe this weekend. I also have to sort out photos to print and enlarge. Can you believe I don't have any framed pictures of Kendra. I kept meaning to get around to it and never did. One thing I am glad that I did, and only a few weeks before she left us, was have Gathry take some nice black and white photos of Kendra and I. They are not digital but I will try and scan them in, there is one very nice one which I want to frame. I do not actually have many photos of her and I or of her and Gathry, more of her and Branston. Mostly we took pictures of her on her own, especially smiling ones.

Someone said something interesting to me the other day. If you lose a spouse you are a widow or widower. If you lose your parents you are an orphan. What do you call parents who lose a child or children?

I am rambling now. I have to get up early tomorrow so I should try and get some sleep.
I miss her so much.

Happy Birthday Sweet Kendra

2006-04-22T21:55:00.000+02:00

Tomorrow, 23 April 2006, would have been Kendra's first birthday. As a matter of fact we are now only 4 hours away from the exact time she was born. How well I remember that Friday night when my waters broke. Gathry was not at home and I got the first signs at about 7pm while watching Fear Factor. I thought I was surely imagining it, I was not packed! It was 5 weeks too early! My replacement at work was only starting in 2 weeks time! But by about 9pm I knew for sure, phoned Gathry to get home quickly, packed a bag and by 2am the next morning Kendra was born. She had to immediately go into high care and since I had a caesarion section I only got to see her the next day when they organised a wheelchair to take me through to her. She looked very good for a baby born at 35 weeks.

The doctor told us that she would need an operation to correct the positioning of her anus but otherwise she was quite healthy. I had problems getting her to feed initially and then 2 days after we took her home we had to take her back to the hospital for a week with jaundice and a blood infection. Once she recovered from that she started sucking well. Then of course we discovered the Jacobsen Syndrome and our lives were changed. In the beginning it was extremely difficult to take in the fact that our child was different and nobody could tell us exactly how different she would be in future. She could have just needed a little bit of extra coaching and been mainstreamed or it may have meant a special school. Now we will never know.

It was an interesting year. We met some interesting people, made some new friends and I think changed our outlook on life quite a bit along the way. Between the operation, the eyepatches, the physio, the eating problems etc, she kept us quite busy. The last month has been quite a challenge and I have not done a post on the blog for quite a few days now as I have really not felt strong enough. There have been some really bad days and as quite a few people said, the worst was after the family had gone home and we tried to settle into some sort of a routine.

Tomorrow is not going to be quite as I had imagined it a month ago. We were going to have a big party, invite everyone, big cake, the usual exciting stuff around a first birthday. Now we will be taking flowers to the memorial park and will try not to think of what might have been. We will just try and think of the joy we had in the past year and how lucky we were to be parents and brother to such a lovely little girl.

Happy birthday my darling.

Durbanville Memorial Park

2006-04-22T20:31:00.000+02:00

A number of people have asked us for some info about the memorial park where Kendra was laid to rest. Last time I went there I took some pictures and here are the nicest. The memorial park is a fairly new trend in places to lay your loved ones to rest. It replaces the traditional cemetery where the graves are all placed in a row with big headstones. As the name implies they are trying to create more of a park atmosphere. There are private standalone ash graves like Kendra's, as well as smaller ash graves in circles such as the picture above with all the roses. There is also an area for conventional graves but it is in the grass and no upright headstones are allowed, only plaques sunk into the grass. Only phase 1 has been completed so far. They are busy building a larger chapel (we could not fit all our guests in the existing 1 for Kendra's service, but we did have a large number of people attending), a crematorium and also a coffee shop. I do not know of another park like this in Cape Town, but I may be mistaken. I must say we have also received very good service from them. The phone number for the park is 021 975 5199.

And no, they did not pay me to advertise for them, but we felt that if we can help anyone out there with some advice then we would like to do that. When we were at the hospital, we were asked which funeral home we would like to use. Now what kind of a question is that for parents who have just lost their baby? Obviously we do not keep the names of funeral parlours handy! So they gave us the number of Avbob in Bellville. It was either there or in Maitland. So we thought that the one in Bellville would be nicer. Well, we were sadly mistaken. Firstly, if they had told us that the one in Bellville did not have a crematorium then we would probably have chosen the one in Maitland since she had to be sent there from Bellville anyway. Secondly, the one in Bellville was in a really crappy part of town. Going there was a horrible experience and I feel that if we had not received good advice from friends about deciding what we wanted up front, then they may have railroaded us into buying things we did not actually want. I think that the hospital did have some other options but they gave us the cheapest ones, and we were in no state to think clearly and they said they had to phone them to fetch her that evening.

I know it is not a nice thing to think about when you and your loved ones are alive and well, but I am thinking that it might be worth looking into these things beforehand in order to lessen the trauma if, heaven forbid, any of your family should pass away. Also it is quite expensive. We went for some slightly less expensive options and also had a lot of help from friends, from advice to catering to printing, so it could have cost us a lot more than it actually did.

Anyway this is all just my 2 cents worth but hopefully it will help someone out there.

To all parents

2006-04-12T21:21:00.000+02:00

This poem was sent to me by Aunt Muriel. I cannot say for sure that it makes me feel any better at this moment, but it is very touching and sums up what a lot of people have been saying.

"I'll lend you for a little time a child of mine" He said
"For you to love the while she lives, and mourn for when she's dead.
It may be 6 or 7 years, or twenty-two or three,
But will you till I call her back, take care of her for Me:
She'll bring her charm to gladden you, and should her stay be brief,
You'll have her lovely memories as solace for your grief.

I cannot promise she will stay, since all from earth return.
But there are lessons taught down there, I want this child to learn.
I've looked the wide world over in my search for teachers true.
And from the throngs that crowd life's lanes, I have selected you.
Now will you give her all your love nor think the labour vain.
Nor hate Me when I come to call, to take her back again."

I fancied that I heard them say: "Dear Lord, Thy will be done.
For all the joy Thy child shall bring, the risk of grief we'll run.
We'll shelter her with tenderness, we'll love her while we may.
And for the happiness we've known, forever grateful stay:
But should the angels call for her much sooner than we planned,
We'll brave the bitter grief that comes and try to understand."

A verse by Edgar Guest (I used poetic license to change the gender of the child in the original verse).

We are trying very hard to understand and feel that she was not sent for her to learn from us but for us to learn from her. She made an impact on many people's lives, the most recent being a good friend of mine who (for reasons we will not go into here) was having problems coming to terms with and accepting her pregnancy. At the memorial service she says she had a total change of heart and feels completely different about her baby girl now.

Kendra has given so much to so many people and yet she never said a word. She had a lovely laugh, which usually led to a bout of hiccups, and hardly ever cried. She just charmed everyone she came into contact with.

And all of this leads me to a question put to me in a comment to a previous post.
Quote:
I'm having trouble with infertility - what do you think - better to have loved and lost or not to have experienced it at all. Sometimes I think of the pain a mother must go through when losing a child, and then can't help to think, maybe better not to have loved at all.
Unquote
I hope you don't mind me making your comment public, I just feel like maybe many others have thought the same way and are thinking of giving up on their quest for a child. This is only my opinion and I am speaking as one who has loved and lost. I cannot say that I can understand the pain that you are going through in your battle with infertility. I never had that problem so I can only speak about how I feel about what I am going through at the moment. Even now, when I am at my saddest and my chest physically aches from the heartache, I would do it all again.

These past 11 months have been truly wonderful. The joy you get from holding that little body and seeing the love and trust in those eyes, from being able to make her laugh, from the smile that appears on her face when she sees you looking at her. These are things that cannot be matched. And I have been blessed with that twice (my son is now 7 years old). And even though it was taken away from me so early the second time around, it is better to have loved and lost than to have missed out on that love. I'm sorry, I hope I have not made you feel bad about your situation, I just don't want you to give up hope. Having children is hard work, make no mistake, but it is definitely worth it. Good luck and please keep blogging, I would like to read more.

Donations

2006-04-11T11:05:00.000+02:00

A few people have asked if we have any charities to which we would like money to be donated instead of sending flowers. At the time we could not really think of any. But there is a lady in my support group who has established a trust to raise money for a centre for children with disabilities. If anyone would like to donate money to this worthy cause then go to the KIDS blog. You can maybe put Kendra and your name in the beneficiary space so that she knows where it comes from. Unfortunately this can only be done locally (in SA), I am not sure how to go about it if anyone from another country wanted to donate money, maybe someone can help me out there.

We are also thinking of establishing a Kendra Meiring trust fund to be used for helping special needs families in various ways, not conflicting with Sheila's trust but to address different things. It will obviously take time to get this established which is why we cannot give you details just yet.

Other babies

2006-04-11T10:37:00.000+02:00

I have held exactly 3 other babies since Kendra. It was not as hard as I thought it might be, perhaps because they were very unlike her.

First was darling Connor who is 2 years old but is also a 'Holland' baby like Kendra. He has Mytochondrial disorder which leaves him very much like a newborn. But he has a wonderful smile, a real little charmer. Holding him was very different to holding Kendra as he is much bigger but less advanced ito gross motor skills.

Then on Saturday I held little Stephanie, a 4 week old baby. She is obviously much smaller than Kendra and still very much a 'new' baby. Not so difficult.

Then yesterday I held little Peter, a 19 month old boy. First thing he did when I took him was put his arms around me, his head on my shoulder and give me some lovies. Almost like he could sense I needed it. He has never done that to me before. That gave me a bit of a moment and it was so lovely to just cuddle him for a bit. But it was still not like holding Kendra therefore was not as painful as I thought it might be. If I held Kendra like that I would probably have been bitten for my troubles!

Of course it doesn't matter how many babies I hold, none of them will ever be like Kendra. Some people might say I shouldn't try and hold my friend's babies as I am opening myself up to pain. Some might say it could be therapeutic. I don't know. I just don't want my friends to feel uncomfortable having their babies around me. Yes, sometimes it hurts a lot when they unwittingly make comments about being kept up all night or the like. But I also don't want them to start having to think twice about what they say to me in case it hurts. These are things I have to go through sooner or later.

How long....

2006-04-07T14:01:00.000+02:00

How long will it be before I can go to sleep without crying?
Before I stop imagining that I can hear her waking up?
Before a door slams and I don't want to get up to check if it woke her?
Before I can close blinds and curtains in our bedroom noisily again?
Before we open the bathroom door at night and don't close it quickly again in case the light wakes her up?
Before the emptiness in our hearts and arms goes away?
Before the sadness becomes bearable?
How long?

Memorial

2006-04-01T22:41:00.000+02:00

Flowers which we have received laid out at home for this picture.

Picture of Kendra in chapel.

Kendra's memorial service was beautiful. We were amazed by the number of people who attended. We estimated that there was more than 120 people there. We just want to say a big thank you to everyone who attended and to those who were unable to attend but whose thoughts were with us. The minister gave a lovely sermon and a friend sang 2 songs - The Rose and Candle in the wind - for us. We asked Janine to read our eulogy and she did a very good job. Neither of us would have been able to. Gathry's mother said a few words - thank you Mom, what you said meant a lot. Kendra's godmother also said a few words, thank you Yvonne. Then the family took Kendra's ashes and some of her favourite toys down to the ash grave and said our last goodbyes. Everyone else joined us and the minister said a prayer. Kendra's nanny then sang a final lullaby, which was very touching. Then everyone came and paid their respects to the family.

Words cannot express what it meant to have all the people from various walks of our lives there. I know that for some who have also experienced losses themselves in the past few years, it was extremely difficult and I really appreciate that you were able to be there. As you can see from the picture above, we have received an awesome amount of flowers. That picture does not even have everything as some were left at the memorial park and some which arrived early had already wilted. I also want to thank everyone who helped in any way. You all know who you are, it would be impossible to list everyone. You all have a special place in our hearts.

The service, as beautiful as it was, was obviously very difficult for us all. People have said that I was brave for not crying much but I think I was in a bit of a daze. I was just not able to cry. I think if I had started then that would have been the end of me. I hope I managed to speak to everyone there, if I did not get to you then I apologise. I have been keeping myself very busy with the family since then just to keep my mind occupied. Now that organising the service is out of the way, there will be more time to think and reflect on what we have lost. As many people have said to me that they don't know what to say to us, so it is difficult to express in mere words how we are feeling. Our little angel is gone. I know she is in a happier place and is still with us in spirit but there is a big hole in all of our hearts which will never go away.

Rest easy sweet Angel

2006-03-28T10:08:00.000+02:00

First of all, I would like to say a BIG BIG thank you to everyone who has visited, phoned, sent an SMS, left a comment on the blog or just thought of us. Nothing can take the pain away but it really helps knowing that so many people out there are thinking of us, even people we don't know. I know some people find it hard, not knowing what to say to us, but believe me, even a hug or a squeeze of the hand helps. I cannot reply to all comments left to my previous post but know that we have read all of them and each one has touched our hearts.

We will be saying goodbye to our little angel on Thursday, although we know she will never be far from us. We have found a lovely memorial park in Durbanville. Here are the details.
Date: Thursday 30 March 2006
Time: 2:30pm
Where: Durbanville Memorial Park, Cnr Klipheuwel/Darwin Road, Durbanville.
(From Durban Road turn into Wellington Road towards Klipheuwel and drive for about 3km. Park is on the right, just past Corobrik)

Please wear happy colours. We will be celebrating her life and not mourning her passing so although many tears will be shed we would like it to be as bright a day as possible.

Goodbye sweet Holland

2006-03-26T10:43:00.000+02:00

This is the most difficult post I have had to do. On Friday evening (24 March 2006) at 11 months and 1 day old, my little angel left this earth. Sweet Kendra had been ill since Tuesday and was in ICU. Her little heart could no longer take the strain and gave up the struggle on Friday evening. If you can measure a person's worth by how many tears have been shed for them then Kendra was worth a lot. I will give you more information when I am more up to it. We still have to finalise details of memorial service etc. Thank you to everyone who has been there for us in these last few days.

Time for an update

2006-03-12T23:12:00.000+02:00

This is Kendra having her first taste of pawpaw. Don't think she liked it very much! We have not been very adventurous with our eating since then. It is difficult enough just getting her to eat her purity at mealtimes. Somedays she will eat (with some persuasion) and others she just refuses. She has also gone off her breakfast cereal. I have tried some different types of porridge but she is not terribly interested.

It has been a while since the last update, my apologies, things have been a bit hectic. Last week we went to see some professor at Panorama medi-clinic. The paediatrician got us to have Kendra's head x-rayed and said we should take the xrays to him. She was a bit concerned about the head shape and the fontanelles. The prof. had a look and he says everything is fine, there is nothing to worry about. She has slight indentations on the side of her head which he says may have something to do with the Ptosis (eye not opening). He says that we should speak to the neurologist next time we see her about maybe doing a brain scan just to make sure everything is ok there but he says that we don't have to rush into it.

Also took K to physio again last week. We are now concentrating on getting her fingers to open more and trying to flatten her hands and put some pressure on her arms as she is a little concerned about them. I need to find a mat like they use at physio as K rolls to the side much easier on the mat than on the mattress at home. I think they are quite expensive though. I must get a list of suppliers from Petra (physio).

This coming week we have an appointment to have K's eyes checked out again. We have been patching now for about 6 months and I think we will still have to for quite a while longer as the eyes are still not focussing. We will also be going to see someone at Chere Botha's school for the disabled. Hopefully she will be able to give us some guidelines on how to improve K's general development. The physio suggested that we see an OT (Occupational Therapist) as well so that appointment is for the following week. It just never ends!

Kendra is being much more responsive now. She takes more interest in what goes on around her and if you give her a rattle she really shakes it. She has had quite a nasty cold this past week and her nose has been very blocked up. Shame, even when feeling so miserable she is still such a sweetie! Full of smiles and still sleeping through (touch wood, she wasn't very happy this evening).

Measles and Milestones

2006-02-23T22:12:00.000+02:00

Ten months old today!! Wow, time does fly. I was still telling people she's 9 months old and now its the end of April already. I took K for her measles injection on Monday. She was a real star. A bit of face pulling and almost crying but it was over in a wink. Her constipation has been causing her more problems than some silly little needle. Had to do some serious poop-pushing at the clinic ie. the sister helped me to help K to relieve herself a bit. I had to go and get some suppositories which helped a lot.

On Thursday last week I had to take her to the doctor as she had not drunk her milk for 2 days, though she was eating her solids and drinking tea. Yup, you guessed it, her tonsils have flared up again. More antibiotics which is what seems to have aggravated the constipation. Ok, enough about her toilet habits, I realise not everyone is as interested as me in how often K poops!!

I was looking at some developmental milestones in a book today and thought I would share how K fits in with them. These are just gross movement milestones. She has reached most of the 3 - 6 month milestones ie follows moving objects with eyes, brings both hands together, smiles in response to your smiles, lifts her head (still kinda wobbly though) and pushes herself up on her hands when on her tummy. She has not really achieved rolling over though or sitting without support. Lying on her back she does kick a lot and plays with her feet. Lately she rolls more to the side but never onto her tummy.

6 - 9 months: Baby should be able to hold head upright in sitting position(yes but still wobbly sometimes) and sit with minimal support(no, needs a fair amount of support but getting noticeably stronger).
Can keep head level when pulled to a sitting position (yes)
Stand on both feet with support (yes! she loves to stand and does so very well)
Feed herself with finger food (no, her mouth is quite sensitive and she is only just getting used to the 2nd level of Purity foods. The sister at the clinic says I need to try her on homemade and finger food so we will have to see what we can do this weekend - she has had cheese curls though)
Able to pass an object from one hand to the other (yes)
Recognises familiar voices and responds (yes, although sometimes she ignores you for a while, in her own world I think)

She has not reached any of the 9 - 12 month milestones yet. She has always had a problem with laughing in that she could not laugh without getting hiccups (apparently a form of reflux) but now she has figured out a laugh which just involves breathing out and is so adorable. She can go for much longer now without getting hiccups but usually they do eventually arrive. The trick is to stop making her laugh before the hiccups arrive! But it does not take much to make her laugh. Especially at her brother. Sometimes she just looks at him and laughs.

And lastly, she is still getting teeth nr 5 and 6 (on top) and all she wants to do is bite. I have to be really careful how I hold her or I end up with teeth marks on my arm or chest. And she is still too young to make her see that it is wrong. I try and give her something else to chew on but she likes material and tends to bite on her bibs and my clothing, which is how she ends up getting my skin between her teeth as well. All I can say is thank goodness I stopped breastfeeding!

And a picture...

2006-02-14T22:28:00.000+02:00

Happy Valentine's day

2006-02-14T22:08:00.000+02:00

Kendra seems to have gotten over her tonsillitis for the moment. Hopefully it will stay away. I have my doubts though. I think it is one of the things she is prone to and with her teething in full swing it will probably come back again. She wasn't very happy tonight but I think that was her tummy.

In terms of her development K is doing very well. When we went to the physio last week she was very happy with her improvement. Her legs especially have become much stronger. And if you hold her hands and pull her up, she first lifts her legs and then pulls from her side. She has also taken to straightening out so that she is standing when you do this. Still a little wobbly but standing nonetheless. We just have to work on getting her to flatten her feet as she likes to curl her toes inwards whenever anything touches under her feet. Another thing we have to work on is getting her to put weight on her arms. Like when she sits (with help) we have to put her arms to the front so that she can lean on them. Also have to get her to open her fingers when doing this but that is quite difficult as she prefers to clench her fists.

But she is holding things now and transferring from hand to hand which I am very pleased about. She will hold a rattle and move her arm around quite vigorously whenever she feels it in her hand. Knocking herself on the head a few times as well, so we give her the smaller rattles like the plastic keyrings, so she is less likely to knock herself out (kidding, just makes herself cry).

I am busy setting up a blog for the special needs group as well. We met last week and it was nice to see those that were there again after a long Christmas break. Every time I go I seem to learn something, whether it is some sort of treatment someone is using or the name of a good doctor or something. But I also leave feeling that there is so much I need to know and so much that these seasoned moms can teach me that 1 hour a month is just not enough. I am hoping that this special needs group blog will help with that as people can put all sorts of interesting things online. See link to this blog - KIDS(Kindness Inspired Dedicated Support).

Tonsils again!

2006-02-07T08:34:00.000+02:00

Kendra has tonsillitis again. Took her to the doctor on Thursday with a bit of a temperature. She gave us a different antibiotic which Kendra seemed to like at first but lo and behold, after the second taste she decided she hates it. But I have tricked her, I now put about 50ml of her milk into a separate bottle and put the meds in that. Works like a bomb. This antibiotic upsets her tummy quite a bit so now she has the runs, which makes a bit of a change from constipation I suppose. She did not have a good night last night and is still not very happy today. A bit feverish. We tried to get a urine sample the other day so that we can test for bladder infection but those bags don't seem to work very well on her. No luck! Anyway we will see how she is later today. If she is still hot, I will have to contact the doctor again.

I have added a link to an article written by a mother of a Downs syndrome child called 'Welcome to Holland'. You must read it. Excellent way of looking at having a special needs child.

Happy 9 months

2006-01-23T22:36:00.000+02:00

At last, some long awaited pics. I think they speak for themselves. Some of Kendra at her baptism, smiley Kendra and Kendra with Mommy and brother.

Kendra is 9 months old today. She is progressing well, just slowly. More of an update on her progress next time, just wanted to put photos on for now.

Dairy or soy?

2006-01-19T14:02:00.000+02:00

Kendra has recovered well from her tonsillitis. Although getting the new antibiotics into her was a mission, we managed somehow. This week we took the docs advice and tried using the Nan formula again. No luck. Even on 1 bottle of Nan a day she started getting cramps (esp. in the evenings) again. The last 2 nights I have really struggled to get her to sleep. V miserable. Both of us. I think we are going to have to stick to the soy formula for now. It is quite a dilemma as she should not be dependent on laxatives but on the soy formula she needs them. So it is either a happy, constipated baby or an unhappy, regular baby. Any advice would be welcome.

Otherwise she is doing very well. Her interaction with her family is a joy to see esp. with her big boet (brother). Her face actually lights up when he comes into her line of vision or if she hears him. My favourite time with her is in the morning when she has just woken up. She lies in her cot quietly until one of us comes over to her and says good morning, then we get the biggest smile. Love it!!

I haven't been able to put any more pics on yet as our home PC is not yet fixed and I need to download from the camera. Soon though.

Happy New Year

2006-01-11T22:32:00.000+02:00

Well, long time no blog! Our home computer is not working any more so I have not been able to do a post for a while. We had a great holiday, just far too short. Kendra travelled extremely well. Both her and Branston were very little trouble at all on both the trips there and back. The family was very happy to see Kendra and how she has progressed. I did not stress too much about her eating solids while on holiday and once we were back home I changed her breakfast cereal and she has started eating really nicely now. She is on breakfast and lunch and I will soon start her on supper as well.

I have been reading up on the 11q conferences in Europe and USA and they sound really good to go to. This year there is one in San Diego and I would love to go to that but am not sure that we will be able to, financially. It must be really nice to meet other families in the same boat.

Kendra has tonsillitis. She had a fever this morning and I took her to the doctor who said it is her tonsils. She hasn't needed to go to the paediatrician for ages and we went back to the doctor who looked after her while she was in hospital in her first month. It was nice for the Dr to see how much she has grown and she is very impressed with her progress. So she is on a stronger antibiotic than before as well as panado. I was given Ponstel to give her for fever but Kendra is not interested in it. When she sets her mind to not drinking something, you can stand on your head but she will not drink it.

She now weighs 7.9kg. We are still patching her eyes although I am very irritated that I can no longer find the eye patches which I was using. They are no longer importing them and I cannot find any others like them. Now I have to buy tape and cut them out myself, which does work out a lot cheaper so it is not all bad. I will put some more pics up soon. Must just get the PC working.

Speech therapist etc..

2005-12-12T22:37:00.000+02:00

I took Kendra to the speech therapist and basically she did not tell me a huge amount. Just some guidelines for feeding and said to stimulate the inside of the mouth with finger or baby toothbrush. She is very young, doubt she has kids of her own so I think it is a little hard to take advice from her. We'll just take it slow and see what happens.

Silly season is definitely upon us, I went to a book club lunch on Sat. as well as a Christmas dinner with friends, both of which were thoroughly enjoyable except for a bit of screaming from K. At lunch she decided to have a real screaming session which lasted about 45 minutes before she fell asleep. She always seems to do this when I don't have all her stuff with me, like Teejel, dummy etc. Not that she takes a dummy. Then at dinner she also had a bit of a crying session. Yesterday I found that her top teeth had started coming out which explains everything. Poor baby, she had good reason to cry!

I have a really, really sore throat, hope I am not coming down with something. Only 3 (maybe 4) sleeps before we leave on holiday. Just cannot afford to be sick now. Going to bed now, goodnight.

PS: Doubt there will be any more posts until we come back from holiday. Hope everyone has a great Christmas.

Doctor's visit

2005-12-06T22:25:00.000+02:00

Yesterday it was Kendra's second assessment with Dr van der Walt, the paediatric neurologist. She is very happy with K's progress. She says that developmentally she is at about 5/6 months but she is developing in the right pattern ie everything is developing in more or less the right order. She now weighs 7kg and her head has increased by 3cm in size. Dr Grossfeld, the doctor in America who has made a study of JS children, recommended that she go for endocrine testing. I asked Dr vdW about this and she says there is no need to rush into it. Maybe we can rethink it when K is 1 year old, depending on her development. I am inclined to agree with her. Unless really necessary, I don't want to put K through having more tests. If there is anyone reading this with JS children, I would appreciate your views on this. Have your children been tested and if so what was the outcome?

I also mentioned to the Dr that K has been on solids for about a month now but she still hardly takes anything in. It just all gets pushed out again. She suggested we take her to a speech therapist. Apparently they can help with this sort of thing. So tomorrow I am taking her to one as we are going away on holiday in just over a week and I want to get this sorted out soon.

Kendra has also done 2 new things which we were quite excited about. The other day she grabbed her bottle and pulled it towards her. The first time she's actually reached for something where it was not just grabbing whatever her hands came across. Also she copied something Gathry did. He made a type of 'ba' sound with his mouth and she tried to pull her mouth in the same way. More than once! So exciting! The one thing which I don't really like which she does is she rolls her eyes. She sort of rolls them right back so you just see the whites of the eyes. She does this fairly often. Although in the last few days she seems to be doing it a bit less, unless I am imagining it.

The last month or so has been pretty hectic. Kendra has been to see someone different basically every week. It just seems like we are constantly going to some doctor or other. I sometimes wonder if it is all necessary, but I want to do as much for her as early as possible so that she has the best start possible. Dr. vdW has suggested we take her to someone else next year, a centre where they do special exercises for children with special needs. That will be once a month, so hopefully all we'll have to do then is that and physio which is also once a month.

What a pretty girl

2005-11-28T22:15:00.000+02:00

Kendra and Branston. Having breakfast. With adoring brother again

Sitting in her bumbo

Aren't I pretty?

Kendra went for a follow up scan of her kidneys today. The doc says that all is ok, yayyyy!! She must go again middle of next year for her next checkup. I forgot to ask him if she must continue with the antibiotics but I know the answer will be yes. He originally said to keep using them till she was 1 year old. Apparently the positive effects (reduce risk of bladder infection) far outweigh the bad. She is on a very low dose.

Her constipation seems to be easing up a bit, but she is on 2 teaspoons of Laxette a day. I think her teeth are really bugging her, she is always rubbing her gums and chewing on her fingers(or mine). We are planning on having her baptised on the 18th December in PE. If anyone is in PE around then, give me a shout and you can join us.

Next doctor's appointment is on 5 December. We are going to see the pediatric neurologist for another assessment. Will keep you posted.

7 months today!

2005-11-23T21:59:00.000+02:00

Happy 7 month birthday Kendra!!

On Sunday we went to the special needs group braai (barbeque for non-SA readers). It was nice to meet the children behind the moms in the group. I also met some new people I had not met at the groups. There were some children there who made me feel like we are getting off quite lightly, but maybe it is too soon to tell. I am going to start a blog for the special needs group as well so that they can all use it to tell their stories or just to share a special moment.

Today I took Kendra to the orthoptist (kind of eye doctor) again. She is the one who has made K wear a patch 3 times a week. She said she was thrilled with K's progress and that her eye is looking really good. We are to continue with the patch treatment until our next appointment which is on 14 Dec and then she may cut it down to once a week.

We are looking forward to going on holiday on 15 Dec so that the grandparents can see how big the children are now. Branston is also shooting up at the moment. By the way, he told me today that he now knows that there is no real Santa Claus and he is now giving his Christmas list to me so that I can start shopping! Apparently the teachers at school told them this but he says that he knew it in his brain because he is clever.

Physio

2005-11-16T21:39:00.000+02:00

I meant to do this post last night but little madam Kendra had other plans. She decided it was a good night to keep me busy till 11pm. Shame, I think her teeth are bugging her not to mention her tummy. She still seems to be a bit constipated. Tonight she wanted to stay up but she was in quite a good mood, full of smiles. I let her fall asleep on her own in the pram. She is really developing a little personality now. She is starting to vocalise quite a bit now. Sometimes she just shouts, that is the only way to describe it. It is not a cry or a goo or ga but a real shout, but not an unhappy one. She is also laughing a lot more now. Only problem is every time she laughs she gets hiccups!

We went to the physio last week and she is very happy with her progress. Kendra behaved herself for most of the session, Petro even got a smile. But of course it had to end as Petro kept putting K on her tummy and that is one position she does not like. Petro says that her head control is very good now, she has almost caught up to her age group. She still does not move around much. We have to try and encourage her to roll over and also to touch her feet with her hands. We are going back there next week for our last session of the year.

We have a few other things lined up as well. Next week is also the next visit to the orthoptist to have her eyes checked again and see if the patch has helped. The week after that is a follow up scan to check on her kidneys and then in December another visit to the paediatric neurologist for an assessment. We are looking at going fully comprehensive on our medical aid next year. At this rate we will be needing it.

And the young lady is really getting into her solids now. We are giving her porridge in the morning (rice cereal) and she is getting most of it down though still pushes a lot out with her tongue. I think that she is starting to realise that this is food we are shoving into her mouth. Though I think she just likes to chew on the spoon as she really clamps down on it if it stays in her mouth too long. And those little teeth are really sharp! I don't know how they don't hurt their top gums when they only have bottom teeth. She sometimes bites my finger when I rub her gums (she likes me to do that) and I end up with serious toothmarks on my finger.

Branston is still very happy with his little sister. He can't tell her often enough that he loves her. I worry sometimes that he will get jealous because lately he seems to get into trouble so often. Maybe he is looking for attention as he is constantly doing things he should not be doing and I feel like I spend my life shouting at him, then turn around and coochy coo to Kendra. Poor Kendra sometimes gets the short end of the stick now as I don't like to chastise him and then immediately go gaga over her in front of him. So she sometimes has to wait a little for her bit of attention.

This Sunday is family day for the special needs group. I am quite looking forward to that. It helps I think to see the children who are the reason for people belonging to the group so that one can get a better understanding of their situations. I have already met some of the children but there are still moms I have yet to meet as not everyone can usually attend the meetings. Gosh but this was a long post! See what happens when I do not post regularly. Best I make time to do this more often.

Feeding habits

2005-11-07T13:51:00.000+02:00

I took Kendra for her 3 month vaccination today (bit late) and she was not impressed. Firstly she was woken up from a nice sleep to go to the clinic and then we started messing with her. She let us know in no uncertain terms what she thought of that! I had to feed her eventually to calm her down.

Speaking of feeding, she has been on Infasoy for about 2 weeks now and it is making her terribly constipated. We started off on S26 but that seemed to give her quite bad cramps then I changed to Nan. It went fine for a while but then the cramps started again so I thought that she might be allergic to dairy, hence the Infasoy. That started off very well but now she is a bit crampy again. Sister Sue says it is probably the constipation and suggest we stay on the formula but give her other liquid as well, like boiled water or Rooibos tea. I have also been giving her Duphalac dry which she says I can continue. Anyone out there with advice on how to sort out constipation?