A well meaning question I was asked recently: How long do you think your son, Harrison, has left before he stops walking?
My answer: I don’t want to know. I don’t ask.
Duchenne (Duchenne Muscular Dystrophy) crashed through the doors of our lives in 2014; Harrison was a 16 month old baby sitting on my knee in the neurologist’s office when we were told our little toddler had this progressive muscle wasting condition. It is fatal and slowly it will take our son from us as. Also… there is no cure.
I lay awake at night terrified, trying to comprehend how this condition would slowly take away our son’s ability to walk, eat properly, breathe independently and compromise his heart’s ability to beat. We were told that he might live until his 18th birthday.
What kind of life is he going to have? How are going to manage it? Those questions quickly became too much to dwell on for too long because so much was unknown.
I fretted about his last steps. How old would he be? Would I know that this would be his last walk in the park, his last steps in the sand, his last touch of the lawn as he walked over it.
I’m even tears now as I type this. Just thinking about the ‘lasts’. I mean, he’s only 5 and we’re still going through ‘firsts’. He’s about to lose his first tooth and in contrast we’re trying out power wheelchairs.
I decided not to ask the specialists about Harrison’s time left to walk, in case they have an answer. I don’t want a time frame hanging over my family’s head and bringing with it a dark cloud. Also, what if the time-frame someone gives us is wrong? Duchenne is a monster anyway but it is known to work at different rates in people and act a little differently in each patient.
I want our house to try and have as much love and laughter naturally and for as long as possible and not be filled with any additional anxiety or stress than we already carry.
Because, boy, we have enough already.
We try to fill our days with activities for Harrison and his sister so that he might one day look back and remember – or I’ll show him one of my many photos – the things he got to experience while he was still ambulatory (jargon of the Duchenne world meaning: still walking).
At our last appointment at the children’s hospital it was confirmed that the effects of Duchenne are more significant in Harrison than other 5 year olds with this disease. There are not many other children his age with Duchenne looking for a power wheelchair already. Mostly families are still watching their kids ride bikes and run and noticing that their kids are struggling to keep up with their friends now and maybe they should get things checked out.
So, I research what I can about beach wheelchairs so that Harrison can still go to our local beaches, I look into kids activities that are inclusive of his needs (not many) and venues that are wheelchair accessible. I buy a lotto ticket on payday each fortnight so that we might be able to find a wheelchair accessible house with a view and be able to get whatever therapy he needs without jumping through a massive amount of hoops. In the past I’ve tried to have a little Facebook hobby shop selling items to help cover Harrison’s medical expenses (but I struggled to find the time to keep it going).
I will keep on trying and finding more ideas and activities for us all because that’s all I have really. I can’t cure my son. If only it was as straight forward as selling my soul for a cure or or swap places with him because that decision is easy. We just keep busy because waiting on a cure that might not come in his lifetime isn’t going to be very productive.
We will keep busy doing the thing that is most important… living.
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