Deterioration is something no-one wants to deal with. That means things are changing. It means life is becoming more and more precious. It’s something you spend your whole time trying to avoid when you have a child with a life limiting disorder. However, it’s something that actually you can’t do anything about.
There have been many times over the last 13 years where we have seen Ethan regress. This has mostly been skills he’s learnt along the way that then after a period of illness or increased seizures, just disappear. Some he eventually relearns along the way, but most he doesn’t and they are gone for good.
We celebrate every single milestone with Ethan because every tiny achievement is massive for him.
t’s also incredibly special because we don’t know if that skill will stay or, like the others, disappear as well. It’s so disheartening when this happens, for us as parents, but I do also wonder whether it’s frustrating and disheartening for Ethan also.
He works incredibly hard to gain these skills and I’m almost certain that he feels the achievement and excitement that we do too when he achieves these milestones. What I don’t know though, is whether he feels that sadness that he worked so hard for a skill and for one day not to be able to do it again.
What if one day you woke up and you couldn’t stand up, or you couldn’t use your hand, or you couldn’t move in a way you could the day before? That’s got to be scary right? It’s got to have some effect on you. Maybe that’s why he doesn’t go on to re-learn the skill. Or maybe it’s because that part of the brain doesn’t work that way anymore.
It’s something I’ll never know and that’s really hard.
For a lot of Ethan’s life we are re-teaching skills he’s learnt before and some we don’t revisit because maybe it’s not as important that he has that skill and there are new skills to be learnt all the time.
Not only does Ethan regress with skills but actually his health deteriorates and he slowly becomes less able to be as well as he was before an acute illness or seizure period. It is something we’ve faced a lot over the last couple of years. It’s something that is hard to watch. It’s harder than just losing the skills, because you are losing a bit of him each time.
All of this combined makes every moment together more special. It means that every single day needs to be celebrated for all those small wins. All those things we take for granted suddenly become the big things.
The things we aim for and hope won’t disappear.
If you focused daily on what your child has lost or can’t do anymore then it makes for a very depressing life. Some days it’s harder than others to dust yourself off and that’s okay. But for the most part you celebrate each day your child is still here as a massive win and take that as your reason to carry on fighting through those regressions and deteriorations.