A picture tells a thousand words but in this case simply, Duchenne. My daughter bounded up the hill whilst I had to help my son struggle up this hill like we seem to do with so many literal ‘hills’ through his life.
There are smiles, but behind that there is severe anxiety. Anxiety which breaks you down with a best friend when you relax and feel you can ‘talk’.
Anxiety that stops you sleeping at night.
Anxiety which means you feel your heart is going to burst.
Anxiety which is always masked by a smile and a nod of the head.
I can imagine most parents are feeling anxious about the next couple of weeks with children returning to school, COVID and the world pandemic. I am too about all the ‘normal’ COVID worries; the spread; the measures; the controls being put in place.
I certainly am anxious, but not just because of this, but, because of so many other factors…. and all of them linked to the bloody thing that is Duchenne. All the extra special ‘offers‘ it throws our way.
I’m anxious about my son’s learning, the fact that he doesn’t learn how we thought, the fact that he needs lots more assessments, the fact that he may not cope learning at school, the fact that I just bloody well don’t know what to do to help him, the fact that this just goes in circles and makes my anxiety even worse.
I’m anxious about his medical care. We have missed so many appointments that in September alone we will be visiting 4 different specialists.
“So not only does he need to start school, he needs to fit in hospital 4 times.”
I can be the only one that goes with him due to COVID measures in hospital, so no gentle reassuring cuddle or hand holding for mummy when all this is happening and I get my wobble.
I’m anxious that there is still no cure; that fundraising has pretty much ceased; that we need support to get trials running to help save my boy’s life.
I’m anxious that tomorrow – 07/09 – is the 5th year that I will be putting a red balloon on my status and asking others to do the same.
All to raise awareness of Duchenne.
There is often pain behind the smiles.
Anxiety setting in now, where is my elastic band…?
💙👊🏻💙#findacure #savemyboy #WDAD2020 #letsfundraise
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