I’m sure that any parent of special needs children will tell you that it’s a roller-coaster of a life. Probably even more so when the diagnosis is of a progressive, life-limiting disorder. That’s certainly been my experience so far anyway. I’ve been through many emotions in the last few months: disbelief, dawning realisation, depression, anxiety, anger, devastation, guilt… You name it, I’ve been there.
Last week was not a good one, but this week I feel lighter again. A meal out to celebrate the end of the play I was in. A bit of sunshine. Talking with a good friend. Baileys hot chocolate. Cuddles with my boys. All these things make a difference.
And then there was the news. Often full of horrible depressing events here and abroad – so I confess I mainly avoid it. But lately there have been two wonderful things pop up in my Newsfeed. First was a young girl with leukaemia who has shown good progress after a pioneering treatment involving gene editing. And second was the announcement that researchers have used ultrasound and microbubbles to breach the blood brain barrier and allow a brain tumour to be treated. Obviously both these cases are very different from the situation we are facing, but it’s a start. Medical advances can and do make huge leaps.
So for the first time since July, this week I looked at Pudding and said, ‘You’re not going to die.’ OK, so I know I can’t really affect the outcome. Whether a cure comes in time for him is still very much unknown. I’m not kidding myself.
But as Andy Dufresne says in my favourite film, Shawshank Redemption, ‘I guess it comes down to a simple choice, really. Get busy living or get busy dying.’
When I look at Pudding, I see a boy who is busy enjoying life with such vitality and commitment. His warmth draws answering smiles from anyone, and he always has loads of hugs to offer.
It may not always be this way, and I know there will be plenty of times that I rail against this horrible condition; when I will see those who are becoming friends lose their battle against it; when I resent anyone who has never been a regular visitor to a children’s hospital.
But for now I choose to remember the words they told me when I first rang the MPS Society – he is the same little boy that he was before diagnosis, and enjoy him for that.
I choose to get busy living.