Your child gets the flu, or he fracture’s his arm, and as a mother, you think about the healing process, the sleepless nights and the pain your child will have to endure for a while. But you say to yourself, it will be fine, we will get through this, and all will be well.
With Duchenne Muscular Dystrophy, it’s not temporary. Your baby will sadly not grow up to be independent.
He may walk for a few years, and then he will be wheelchair-bound, asking for your assistance 24/7.
Jason, my only son now 15, was diagnosed late with Duchenne Muscular Dystrophy when he was six years old. He became non-ambulatory at age 11, the average age a child with Duchenne stops walking.
The change in my life didn’t happen from diagnosis; it was there from the beginning of his beautiful life.
Not meeting milestones endless doctors appointments, you end up locking yourself up in a bubble of your own. To add to this awful disease, he was diagnosed with mild Aspergers too.
I had to carry him on and off the school bus on school outings. I ended up quitting my job to be present at his school to help him to the bathroom because the teachers were not prepared to do it.
There is no such thing as waking Jason up in the morning and telling him to get washed and hurry to the breakfast table.
After a night of being awakened frequently to help roll him over to get comfortable, the mornings are exhausting. You don’t have a break from it during the night, and I land straight back into it as soon as he opens his eyes.
You end up neglecting yourself because you are constantly putting your child’s needs first. For example, assisting in dressing and washing him before you even really get a chance to get through your own routine.
Jump in the car; we need to get going; sadly, it doesn’t exist. It takes some time to get Jason into the van comfortably, never mind a million things he needs packing. This includes his urinal bottle because most places are not accessible. There is so much planning and thinking through before we set off anywhere.
As his carer, I can no longer have the freedom I used to have. I can’t just go off and do some shopping and ask a friend to help look after him. Between the autism and the careful care guidelines, such as knowing how to lift him for toilet time etc., it’s not that simple.
To be honest, I wouldn’t want it anyway. I have a duty, and that’s to be at Jason’s side. His ultimate favourite thing is to go out for a drive, and I couldn’t find it in my heart to leave him behind.
The progression of Duchenne is fast. When you wrap your head around one transition of the disease, the next phase knocks on the door, not invited, of course.
I have learnt to despise so many things. Simple things. Watching kids jump on a trampoline brings me bitterness. A flight of stairs brings me anger.
However, the journey brings with it a love for your child that you just cannot put into words. A special child that somehow makes you a kinder and better human being.
A journey that is unpredictable where time is everything, but as I always say in my posts on Jason’s journey Facebook page, tomorrow is not guaranteed for any of us, healthy or ill.
I will continue raising my child with a smile on my face, be brave for him, encourage him and advocate for him for as long as he needs.