September

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

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!

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...

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

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...

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

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

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

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

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

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

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

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

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.