11 years ago I gave birth to a beautiful little girl, I have never wanted anything as much as I’ve wanted children, especially a daughter.
When she was 2 days shy of being 6 months old I cradled her as she died. Spinal Muscular Atrophy type one. I hate it so much, mentally she was fine, but it’s a physical condition, it’s a faulty gene issue and it’s genetic.
http://www.smasupportuk.org.uk or Google SMA.
We had no idea we were carriers, we hadn’t even heard of it. But there is a 1 in 4 chance per pregnancy if both parents are carriers.
We found out our siblings are carriers but their wives weren’t so there children have s 50/50 chance of being carriers.
We had 8 weeks from diagnosis before she died, to get our heads around what was happening. My beautiful, perfect, giggly, bright as a button little girl would probably not see her 1st birthday.
I sit here by her grave writing this. I’ve just been and put fresh flowers on her grave, the grave she shares with my Grandparents. At least my wonderful Nan is looking after her. I couldn’t ask for anyone better to be looking after my girl than her great nan.
5 years and 10 days after her birth I was delivering her very tiny baby brother, who had already died, he had SMA too.
Around both of my babies I had 3 miscarriages.
I’ve done all the why me’s, why us, why them over the years and I’m still none the wiser about why.
The heartache never ends, you just learn to move ahead with life, because that doesn’t stop, the world around you keeps moving and you have to move with it as hard as it is. Some days are worse than others, birthday’s and Christmas are particularly hard. But significant dates like the date they would have started school etc. It’s so damn hard.
People say “oh I couldn’t keep going/couldn’t cope if anything happened to one of my children” Does that mean because I do cope that my babies meant less to me than their’s does to them?
We still talk about her, we might be saying something about my nephew when he was young and she would come into the conversation. He doesn’t remember her, he was 2 when she died, the other nephew was only a baby himself.
As time goes by other family members forget or something may bring a fleeting memory of her time with us, but for her dad and I, and her grandparents, she is always there, tucked away at the back of our minds, but never forgotten.
We do now have a son. No risk of SMA with him. We stopped trying, the risks were too high and after 5 pregnancies it was getting harder. So we adopted him. He is wonderful and gives us a reason to live again.