We’ve had some tough times through diagnosis and beyond. It’s always hard when we hit the time of year when life changed for us as a family. Mixed in with January blues, we always find this week tricky and this year even more so. Your mind flashes back to that room, those words, the terror of what life will/won’t be.
This January we hadn’t banked on spending it being punched in the face with the detrimental effect DMD is having on our beautiful son.
Firstly, he got pushed out of his wheelchair at school, causing a fractured elbow – and goodness knows if more fractures in his spine! His recovery was a sling which, for most children, is a small inconvenience. For William, it meant his entire independence disappeared overnight – no ability to stand up, sit up, get into a chair, get in and out of bed, go to the toilet, drive his wheelchair – all gone, just like that!
He celebrated his birthday during this time and turned double digits….forever getting closer to that age when we were told his mobility could cease – and we really are seeing those signs now.
Last week we had to attend hospital for bone infusions – so much anticipated stress for us parents and unknown anxiety for our little boy. Little Phoebe also knowing her mummy and brother were going to hospital and not knowing when we’ll be back – so much for a clever, sensitive 7-year old brain to cope with. Bone infusions are needed due to his spinal fractures. Imagine being told your child has fractures in their spine – can you? It’s just another line from a consultant that you have to take as a punch and decide what treatment can be given, if any. We’ve run out of any drugs that will help us.
The bone infusions went to plan at hospital so we were discharged after 28hrs. But only a couple of hours at home and he rapidly declined screaming out in back pain, sickness and fever. Tough for mummy and daddy but also for Phoebe who had to witness it.
Every punch like this hurts. The more we get, the more we fight. But we feel like we are losing a battle; WE FEEL LIKE WE ARE DROWNING. Are we really ahead of the game? At the moment, I feel like we are chasing duchenne rather than combating it – the punches keep on coming.
He doesn’t remember the time before duchenne; his sister has only ever lived a life of duchenne. The decline is so real right now. Little free walking around at home, constant support with either a walker or a support chair on wheels. Handling and manoeuvring all being done by us parents. We’re asking him to still try to walk – causing more often than not tears and his cries saying:
My legs won’t work. They’re wobbly. I CANT STAND
Total and utter heartbreak, day in day out with no end to this nightmare in sight.
Duchenne really can *uck off right now.
3 thoughts on “7 years …..”
I’m sitting here crying and wishing I could help
You are an amazing daughter and Matt and Phoebe, your family, are amazing too
William is a happy child even with his condition and that’s because of you all
We love you and are always here for you xxx
Hate hate hate everything about this! F#@* Off Duchenne!!!!
Love you all xxxx
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Our hearts go out to you all, there is nothing we can say to take it away,or make it better, just know you are in our prayers xxx
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