Sunday, May 28, 2006

Kendra and friends

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.

Wednesday, May 24, 2006


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.

Tuesday, May 23, 2006

2 months

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.

Monday, May 15, 2006

Happy Birthday Nanny

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.

Sunday, May 14, 2006

Mother's Day

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.

Wednesday, May 10, 2006

Meet Charli

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.

Friday, May 05, 2006


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.
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