The joy of looking back again

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.

Amelie at 6 weeks of age. She was happily wake for a long time and was just KO once she got home. I love her hair!!!


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!




  1. Reply
    Misty November 21, 2012

    It’s so great you have the beautiful pictures and videos to reflect on. My son died 6 weeks ago from GM1, so similiar to GM2. He was only 21 months. We have a healthy 3 yr. old and decided to move forward with trying for another child. We were hoping the baby would arrive while we still had our Jordan but unfortunately that didn’t happen. It crosses my mind that people would think we might be trying to replace Jordan. But as you said, these special children are absolutely irreplacable. God bless you and the journey you are on. I know it’s a hard one. But you are so brave to walk the walk.I know we are stangers but much love to you and your family…

  2. Reply
    Hawa November 29, 2012

    Hi Patricia,

    Amelie looks so angelic in that picture of her as a baby. She is beautiful
    It’s scares me to think that one day we will only have their pictures and videos to look back on. But it’s the memories that are something no on can take away.
    I find myself trying hard to capture moments in my mind. Of my son running to me from the school gates, singing in the shower at the top of his voice. :-)
    Moments that won’t last forever I know.

    It doesn’t really matter what people believe to be the reason you had Grace. The bubble we live in; do we really need to justify ourselves to anyone? Yesterday I watched my little girl of 19-months wipe the tears from her brothers face with her tiny fingers. He was crying because he was struggling to swallow as his throat muscles have weakened. And at that moment I realised that even she understood.

  3. Reply
    Rachel November 29, 2012

    Oh how beautiful she is. TS can never take away her essence, her soul. Only a deeply unfeeling, unthinking person would think she could ever be replaceable.

  4. Reply
    Raquel Abecassis December 3, 2012

    Beautiful!! I support 100% your choise to have Grace, never thought about replacement but a new family member- second child. And i´m glad to Know that Grace bring a special feeling to you mummy Patricia. :0) Proud of you!
    Special kiss to you all!!

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