Tomorrow is the day...

[TheReigningLorelai]

I posted a few weeks ago about my son who has been diagnosed with muscular dystrophy. Tomorrow we find out if it is, as suspected, Duchenne. Tomorrow I also have a blood test and the results of that in about 3 weeks will tell me if I'm a carrier and if it's me that's passed this on to him, or if it's a random spontaneous gene mutation.

I am so lost, and so sad. I feel as though I am grieving for a future that my bright, active, beautiful boy may no longer have. Family and friends have been supportive, but it seems that I'm at the point that people are starting to not want to be around my sadness. I try, so hard, to be okay. But I'm not okay. I'm falling apart.

There is no point to this post other than to just vent a bit. I don't know what else to do anymore.

Hello. I didn’t want to read and run. I can’t offer you any advice as I’ve never had to deal with such a heart wrenching diagnosis. I have however supported a friend when her son had a life limiting illness. She had dark days but we were there for her. She also found the strength of a lion to get through it. She absolutely amazed me and still does. Please look after yourself. Give yourself time to take it in but also enjoy every minute you can with your beautiful child.

That is really hard, it sounds like you need compassion. Do you have / have you had any counselling op?

Your son will always amaze you

Thank you for the replies. I haven't had counselling yet but it's something I'm planning to look into. The last few weeks have been a bit of a whirlwind and I've just not had the time or inclination to sort anything out.

My friends are wonderful, and have been so supportive, but I'm just getting this sinking feeling, an anxious pit in my stomach that I'm being annoying or a bit of a drain on their lives because I just can't snap myself out of this sadness.

My son is the most wonderful boy. I can't comprehend what's happening because it still doesn't feel real. I know that he will continue to be the amazing (if slightly stroppy and demanding) child that he already is. I just wish this wasn't happening.

Just wanted to send hugs.xx

I don’t know if you’ll see this post OP, but just wanted to let you know that my son has Duchenne Muscular Dystrophy. He’s 13 now but I remember all too well the place you were in when you posted.

If you need someone to talk to feel free to message me. I also admin a Facebook support group for parents of children with Duchenne in the UK & Ireland if you received a positive diagnosis and want support from other parents or just to talk to others who understand x

@JustSeven thank you for the message - I’ve PM’d you.

Could you please share the name of the Muscular Dystophy Support Group. @JustSeven

Our son has just been diagnosed with DMD at age 2.

@TheReigningLorelai how did you get on with your appointment.

@Onein5000 I’m so sorry. It’s Duchenne Parents Support Group x

Sorry Duchenne Parents Support Group - UK & Ireland

@Onein5000

Could you please share the name of the Muscular Dystophy Support Group. *@JustSeven*

Our son has just been diagnosed with DMD at age 2.

@TheReigningLorelai how did you get on with your appointment.

Hi - it was confirmed that DS1 has DMD. It was a pretty horrendous day, and the weeks/months that have followed have been really hard. He's started on steroids now which so far we haven't seen too many side effects from (lots of strops and emotions, but that could also just be because he's 5!). His sleep is horrendous but he's just been prescribed melatonin which is helping massively.

I'm also pregnant so that's been a worrying time as I had to have a CVS to rule out DMD and that put me in hospital for a week with internal bleeding (but luckily no DMD!) so with the added stress and pregnancy hormones I've been struggling quite a lot. It's the unknown future that I can't get my head around - my brain keeps going to some dark places, and I don't really have anyone to talk to about it because no one understands.

I hope all is okay with you x

@JustSeven @SevenSwansASwimming Thank you 😀

I’m so sorry to hear this. I know exactly how you felt as I am going through the same exact emotions now. I’m glad to hear the melatonin is helping.

Aah congratulations on your pregnancy also and so glad you now have the all clear on DMD for your new arrival.

I’m sorry to hear you feel alone. I will PM you and we can exchange details. I’m happy to talk.

Thank you for asking. Things are okay but also just can’t get our heads around how this has happened and what our lives will look like. It’s heart shattering to imagine the future. I’m reminded of it every time I look at him. I’m hoping with time we can start enjoying the now and focus on each day at a time without worrying and dwelling about the future.