Additional Needs
Puberty has landed
by Carolyn Voisey
on 11th April, 2024
The battle to stay in balance
TRIGGER WARNING: discusses child death
It’s a fact of life that every one of us will at one point in time cease to be as a living, breathing person. Its inevitable.
And while not the most comfortable of topics to discuss, it is important to do so.
Both J and I are clear on what we want to happen after our own deaths. And as parents of a medically complex, life-limited child there are certain realities that we need to address.
We will almost certainly have to bury our child, and while that is a devastating thought to live with it also means that we have a chance to prepare.
I don’t mean prepare ourselves per se, as someone we know once said knowing that something is going to hurt doesn’t stop it doing so when it happens.
What I mean is that we can decide what we want to happen, where we want our boy to receive end of life care and what that care might look like, and what interventions we do and/or do not want him to have.
This comes in the form of an Advanced Care Plan; it’s something I have feared and run away from even thinking about for years.
After all, my son isn’t actually dying is he?! He’s currently well, happy and enjoying his life.
And as long as that is the case I can exist in my lovely, happy bubble and stay, well, sane.
We are very fortunately to be supported by an amazing palliative care team; the Dude’s consultant explained an ACP is just like a Will, it is in fact called a ‘living will’ by some.
It doesn’t mean we’re writing him off, but it does mean that our wishes are recorded so that if/when its needed we can focus on just being with him.
I’ll admit that has helped me put things into a better perspective.
As a society we’re getting better at talking abut mental health, but we still baulk at talking about death; too many people don’t have a Will in place, don’t talk about organ donation, or whether they want to be buried/cremated/have a natural burial.
If by talking about it in a positive way and putting things into place we can ensure that our son’s eventual passing is as peaceful and the best death possible, then surely that’s something we should welcome the opportunity to do?
