Surviving a critical illness....

[Atlantisite]

Has anyone been in a similar boat? I have a DD who is a teen. Last year, she survived a critical illness. She was just a typical, healthy teen, on the cusp of starting her life, when she was struck down out of the blue. A couple of nail biting weeks in intensive care, a couple of months in hospital. Left with a life changing diagnosis, full of uncertainty, and daily treatments which are demanding on her, us and her quality of life. It is so much to navigate, some days pretty dark, others ok. Hard to meet others who have also gone from 'normal' life to a life full of medical appointments, restrictions, etc. We know we're lucky she's with us, and it could've been much worse, but our old lives ended that day and this one began...

Have she /you found groups for people with her condition/those caring for someone with it?

I have found so much solace and understanding by joining a Facebook group for people with my condition. That said, sometimes it is a bit of a sideways blow when they announce someone from the group has died. But overall it makes me feel less alone with what I am going through. I have also found following people with the same /similar conditions on Instagram etc helpful

Thank you. Yes, found lots of groups. Teen does not wish to take part in them. I've found them useful.

Have you suggested one to one counselling for her? I am no psychiatrist but she may have ptsd following such an ordeal.

It’s a lot for a teen , and you to take on board. If there is help available and she is willing to engage, it may be useful.

Not critical illness as such but ds has a degenerative neuromuscular condition.

He was a normally active child until 8 when he started suffering pain in his legs. Diagnosed at 15 with a rare condition and now at 20yo uses a wheelchair for a lot of time as can't walk at all.

For him getting into parasport has been the life saver. He has a focus. At specific para competitions everyone has a disability. There's people with missing limbs who were born that way or amputees.
Meningitis survivors with multiple amputations. People with MS, CP and other genetic physical disabilities (like ds). People with varying degrees of visual impairment including people who are profoundly visual impairment and have no sight when competing.

It's a world where he is like everyone else and not different. And although he trains with able bodied people he says it's the best of both worlds.

I don't think your world changing overnight is ever easy to accept. It's more about managing that and channeling those feelings into something that's positive for you.

Yes, has regular therapy and a diagnosis of PTSD. Semi helpful, but sadly can't change the outcome of her illness etc.

Thank you. I'm always glad to hear positive stories where brutal change still has led to positive things. It sounds like he can really channel his energy and connect with others in a similar boat. My DD has a hobbie she does weekly, and prefers not to immerse herself in her diagnosis too much. It's hard though as I've tried to encourage connection with others but it's not for her just yet. Her stamina is low, so she can't keep up with her peers, and her daily routine is restrictive.