Muscular Dystrophy Diagnosis

[TheReigningLorelai]

I'm so angry. I don't know why I am writing here but I just don't know what else to do.

My beautiful boy has been diagnosed with muscular dystrophy. It was discovered after a routine blood test showed some abnormalities. We don't yet know which type of MD it is, and it will take 6 weeks to get those results. I'm terrified. I feel like I'm not in my own body anymore.

Everything looks the same but it's all different.

I'm sorry to hear that OP, I can imagine you're feeling completely lost right now.
As I write, I'm sitting in St. Thomas's hospital, in the sleep study unit with my 14 yr old DS. We are checked in for a sleep study and an mri prior to some fairly significant spinal surgery. DS has been disabled since birth. He is not cognitively impaired, just physically, with a unique, genetic based, neuro-muscular condition that means he uses an electric wheelchair to get around and cannot manage many of life's most mundane tasks. It sounds awful on paper but, do you know what, once the shock of it all has died down, you just get on with it. He is still your boy, he will still be just as funny and infuriating as he has always been. Your journey through this challenge will bring you closer and your heart will burst with pride as you watch him grow and achieve and become the young man he is to be.
Find support, there are some fantastic forums on FB full of Mums and dads that have been exactly where you are now. Reach out to them, they will be an amazing source of comfort and really useful information. Just know these two things: you are not alone and you will get through this.
All the best.

@SpeedRunParent

I'm sorry to hear that OP, I can imagine you're feeling completely lost right now. As I write, I'm sitting in St. Thomas's hospital, in the sleep study unit with my 14 yr old DS. We are checked in for a sleep study and an mri prior to some fairly significant spinal surgery. DS has been disabled since birth. He is not cognitively impaired, just physically, with a unique, genetic based, neuro-muscular condition that means he uses an electric wheelchair to get around and cannot manage many of life's most mundane tasks. It sounds awful on paper but, do you know what, once the shock of it all has died down, you just get on with it. He is still your boy, he will still be just as funny and infuriating as he has always been. Your journey through this challenge will bring you closer and your heart will burst with pride as you watch him grow and achieve and become the young man he is to be. Find support, there are some fantastic forums on FB full of Mums and dads that have been exactly where you are now. Reach out to them, they will be an amazing source of comfort and really useful information. Just know these two things: you are not alone and you will get through this. All the best.

Lost, shocked, devastated. Thank you for your kind words.

It's just so hard to wrap my head around because he is FINE.

You'll get there, OP. It's traumatic to realise that one of your children has such a life altering condition, it's natural to be in bits about it. But you will grow to cope with it, there is no choice. Your DS needs you to.
Seek support, find people who are in the same boat, just a little further along. They'll support you while you put yourself back together.

I know waiting for confirmation of which type of MD will be hard. Try not to google or guess. If it's a less severe type you will have worried unnecessarily. Take each day as it comes and remember your son is not different today than last week, it's just you know a little more about him. Muscular dystrophy.org uk have a helpline you can call for support.