It is so hard to witness your child’s abilities disappear before your eyes….to say to you “I can’t do it, my legs aren’t working”, to cry over the fact that his legs aren’t supporting him.
Our life is changing and we are veering towards another stage of Duchenne – fast. I’m not sure if we are sailing or sinking into this step, it’s fucking hard. To see your child’s independence disappear, for him to notice even more is beyond heartbreaking.
To make matters worse we received the news – after a dexa scan, spinal xray and Endocrine appointment- that he has spinal fractures.
How the hell do you fathom that as a parent?
So not only is he loosing his ability to walk, he now has a serious medical problem we need intervention for. How? Well to start with we are now going to be referred to both the orthopedic and rheumatology departments at Addenbrookes. More appointments, more consultants to see!! This is to see what the extent of the fractures are, what interventions can be given or if further surgical measures are required…..what the actual f***. So off I go to hit the ‘books’ before the consultations in December to make sure I have got a clue on what they are saying and offering when we meet them. 🤓 Again mumma medical PA comes out!
To help William with his decline we are making more alterations at home – getting the driveway level, getting a new chair for him to sit on at the table & a shower chair. As he currently uses a walker at school, we are not being supplied one for at home (each child is only entitled to 1 although its too big to carry to and from school daily) £350 later and mummy & daddy have purchased one to keep our boy mobile at home!
Socially we are struggling, if the house we’re invited to has no downstairs toilet, we can’t go. If daddy isn’t around to help with lifting – we can’t go. We are happy to host seeing our friends, and hope they understand that this is now, quite often, the only way we really can ensure William is ‘able’ to enjoy social time with other friends and family. Please don’t see it as rude that we can’t come to visit you, we wish we could. 😪
It is getting that hard for William that play dates (which are very rare) are pretty non existent unless at our house. My heart breaks that to have fun with friends is becoming so hard. We’re adapting our playroom to make it more of a ‘den’ for gaming, hoping this means more friends will like to come over.
The future of a life fully wheelchair bound is cascading in on us far quicker than we thought when diagnosed. Don’t get me wrong, I know we will adjust and I’m not saying being fully wheelchair bound is all negative. But, for us and for William it is going to be fucking hard and a life change we wish wasn’t going to happen to our little boy.
Life can be so unfair sometimes & I say it often in my blogs, but I really do think we need a break from the world of misery that dooms over us so much. Me and Matt will keep going for our little boy, but we are both finding this really, really hard and heartbreaking (behind the faces of smiles). 💔
5 thoughts on “Declining”
Bless your heart Jo.
As Duchenne parents there are so many changes you have to face…. And each one breaks your heart a little bit more.
When William does go into a wheelchair it may be an easier transition than you are anticipating. Dominic was very active but he chose to go in his wheelchair as he didn’t feel safe on his legs anymore and all of a sudden he had more independence again. Hugs to Will.
You know where I am Jo. ♥️
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You are all amazing,such a cruel condition, i wish I could wave a magic wand for you all xxx
My heart breaks for you all 😢
As someone who has permanent medical issues and appointments I feel your pain 😢
You are an amazing family and William is lucky to have you all xx
I know there’s nothing I can do to help but I can send my love and understanding ❤️
I have been in a situation where you look at your baby and feel totally helpless and it’s the hardest feeling for a parent… I wish there was more any of us could do but I am sending you all love, support and courage for each day you face.
You are doing an amazing job and will continue to be strong and fight for your boy to have the best life he possible can X
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I just found your blog. I have daughter with another progressive condition called CMT. It’s a form of muscular dystrophy. It’s so so hard to see child lose abilities. My baby is 7 and we are progressing so fast as well. Hugs to you.
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