One of the first parents that contacted me through this website told me, amongst other things, that it must have been lovely to see Amelie grow and develop until the disease started affecting her but she also told me that it must be equally devastating to have to watch all she learnt disappear.
At the time I didn’t want to rationalise and dwell on it. I thought she said it to me to make herself feel better because her child had hardly hit many milestones. But I know that’s not why she said it, and I knew it then that this was going to be the hardest part of all and so I put the thought to the back of my mind and avoided looking at Amelie’s photos, reading her baby book and tried my hardest to stop remembering.
Clearly I wasn’t dealing with it, and now I see that actually for me this is the hardest, the thought that my baby was disappearing little by little.
When a baby hits milestones, we take note of the date, take photos, post it on facebook as a sign of pride. When they lose them we don’t know that that particular cry, laughter or step was the last one. And so I spent the last year looking back trying to remember when was the last time I saw her doing certain things and got caught up on that instead of looking at her and remembering all that she did do, regardless of how long she did it for or until when.
Now I have Grace and at 3 and half months she can do a lot more than Amelie can at 3 years, and yes it is extremely painful and awful to see this difference, to realise how affected Amelie is every single minute but it brought something back to me, I can look back now.
I have finally opened iPhoto on my laptop and gone through all the 1’000+ amazing photos of Amelie and some videos and found myself smiling, because I can see this is the same Amelie that I am looking at through the video monitor, I am not sure what it is, but there’s just something in her that TS will never be able to take away.
And so I have decided to make this blog a lot more personal at times and I will be posting some of my favourite photos of Amelie, I have realised that I need to find joy in the past as well as the present like any other parent does.
The decision to have Grace was not an easy one, those close to us and that are affected by TS know the risks of having more children. But apart from that there is also the conscious decision of having another child, of the burden that it could pose to be the sibling of a terminal ill child, how to raise a child after being struck by grief and going through it. But there is also the element of what many think – ‘the replacement’. I am certain it has struck many people’s minds that this is what we were doing, it’s not. No child can ever ever ever be replaced, and certainly not Amelie, no matter how many children we have, but Grace has brought me something unexpected – the joy to look back!