I don’t know how I feel since a telephone call 2 years ago that shattered my life and my families too.
Many people know I wrote / write a private blog to get my thoughts down. It was/is my way of coping with the Duchenne diagnosis. If you want to know how this type of diagnosis affects a mummy then feel free to read my blog from the start (there are a lot of posts) and you’ll get the gist!
I think people believe me to have it all ‘in control’. You couldn’t be more wrong.
Yes, I am actively involved in all manner of things Duchenne now and yes, I am so happy to be fighting on the front line rather than taking a back seat.
I don’t want to have to chat to the (supportive) school every week about new interventions for William – in case you didn’t know he doesn’t learn like your child either. He has different adaptive equipment, he can’t mark make (write) all to well yet, he has a different chair, your children carry their tray at lunch – William doesn’t. I could go on.
But he is happy at school, and that’s all that counts right??
I don’t want him to own ‘Fred the Frog’ (who he loves so much), especially for all his hospital appointments. He has so many. I probably spend the equivalent of a ‘Lego’ set on petrol and parking every month – just imagine how many sets he could now have!
I don’t want to have made over 100 new friends over the past 2 years; I don’t want to have an affiliation to other DMD mothers that I now have; I don’t want to have made solid friendships with other people that are the only ones who truly get my life.
If I could change it all, I would lose all the new friends and give William back his life as a healthy boy. But I can’t, so for that reason I cherish them and their support.
We launched ‘Defending William Against Duchenne’ on his 5th Birthday (16th January 2018) and we are getting some amazing support. The reality of it all is that I feel upset that our family cannot afford the renovations ourselves and are forced to ask the world to support us instead.
Some people may not understand why we can’t just pay for it ourselves and why are we extending / adapting our home now. Matt works full time, I work part time and also am William’s medical PA and mummy to both kiddies.
Well, I’ll let you know from mummy’s point of view why we are doing what we are doing.
My son cannot just walk into his house – he has to hold onto the wall and step in / out or I have to help him.
My son cannot walk to the toilet without holding onto the wall to step down one silly step. He cannot sit on the toilet himself comfortably as we need rails to help him.
My son cannot go up to bed on his own, I have to carry him as he is too tired by 7pm. I do bedtime on my own as daddy is at work. My back cannot take it much more.
My son cannot have a bath in his own house – we use a baby bath as we do not have a bathroom big enough for a normal bath. Mummy has to lift him into the shower cubicle where the bath sits. My back cannot take it much more.
My son cannot go and brush his teeth on his own as our ‘bathroom’ is down 3 steep steps. Mummy has to help him.
My son cannot use the toilet in the night as we do not have one upstairs and he cannot physically walk the stairs to get to the downstairs one. Oh, and he wears night splints so that would just be ridiculously dangerous.
He will, in the future, be in a wheelchair. So every door we have needs to be widened so that he can access all of his own home. As a mother knowing that it is highly unlikely your child will ever fly the nest is very, very hard to handle.
Already you hear friends talking about ‘when they grow up….girlfriends…independence’ – it stabs a mother like me direct in the heart.
It’s two years on and although I’m not the blubbering mess I was then, it’s changed me and I’m not who I used to be. Life is so much harder and so much more emotional. I’m living a parallel life to others now in many aspects. But we are still living and god damn it my boy is going to carry on smiling if I have anything to do with it.
Thank you so far to all of you for your support over the past two years. In reading my blog many of you (unnamed) will know just how much you have helped me.
Let save my boy and fight the fight
4 thoughts on “2 years on”
I came across your blog and the Defending William against Duchenne blog today. I live in the U.S. and have a different form of muscular dystrophy, but I can in many ways relate to a lot of what William is going through in terms of loss of mobility. I also have gotten to know many parents whose children have Duchenne, and both they and their parents are truly remarkable people. I am heartened by the research going on for Duchenne, and I am hopeful William will benefit from it someday! I will keep your family in my prayers, and if there’s anything I can do to help, please let me know.
Thank you so much for commenting on my blog and for reading it.
It is lovely to hear from people living a ‘similar’ life to ours.
Thank you for your thoughts.
You’re welcome! 🙂