This post is mostly for you that might be in the same situation that we were in 5 years ago. I just want to say, although you honestly don’t think you are going to survive – I mean, how can you when your child dies – you do survive! Somehow you do.
We decided on creating this “fairy tale” about Ingrid being a very old soul that only needed a huge boost of unconditional love to rise to the next level, and that we had to respect Ingrid’s life journey. She had chosen us as her parents because she counted on the support and unconditional love she needed to survive as long as she could. The diagnosis was what it was and we couldn’t change that, so we might as well do the very very best we could, and I’m SURE that every parent would. For us it was pointless to start asking “Why us?”, “Why her?” etc. You are never ever going to get a satisfying answer.
The hardest part was that we felt so alone, abroad without our relatives and close friends close by for support (however, a lot of new, beautiful people stepped up and helped us!!). That we just got sent home after getting the diagnosis, without a follow up plan or support system in place made me feel so lost and helpless.
We found ourselves standing outside on the pavement outside the hospital in a dark, wintery Zürich, not knowing if what just had happened was was real or not. It all felt so surreal. I just wish that there had been someone there to offer us a big hug or hold our hand for comfort, but there was no such person. So after Ingrid had passed away, I swore that no one should have to feel that lost and lonely so I volunteered as support family both with Kinderspital Zürich and Kinderspitex (home care unit for palliative care at home) in case anyone else would get the same diagnosis and asking for support. I received a phone call from Kinderspitex last week again, and although it brings back very raw memories, there is no way I’m going to step away from that responsibility.
So here is my offer: if you have just gotten the same, shitty diagnosis SMA type 1, and you are “Googling” (as we did) after what on earth just smashed your life in to tiny tiny pieces, PLEASE contact me! I’m here, I can listen, I can take it!
Lots of love, Karin