I swear to god, skin cancer will cause more problems for shane than SMA in the end. His skin is always burning, Hannah never applies the sunscreen properly. He has so many eye wrinkles and such weathered skin for his age
The condition of his skin, how filthy his chair/ hands are, are signs to me that his care is too overwhelming for one person to handle (which is normal and fine, thats why people with disabilities like Shane qualify for in home care!)
His teeth, too. Maybe there's some staining happening as well, but it doesnt look lime his teeth are brushed like, ever.
When he speaks, he sounds really gunky, like he's full of phlegm. I understand that he doesnt have the strength to cough properly, but he would likely benefit from that same therapy that people with cystic fibrosis get- the one where someone needs to hit at their backs to help loosen things up. Also someone who would help inspire Shane to do the therapies he should be doing- including wearing whatever he's supposed to wear for his wrists/ hands.
It would likely be uncomfortable at first, but it seems like at the end he would have more use of his hands instead of the odd angle theyre always bent at.
And what happens if they get their wish and have babies? Hannah, if youre reading this, please listen. It is not a failure not not be able to do all of his care. Newborns are so much more needy than you ever expect- how will you care for both Shane and a newborn? You were tested for SMA, and likely wont pass sma to your kids.
You realise that there is a lot of other things that your kid(s) could be born with/ end up having? Down syndrome. Cystic fibrosis. Diabetes. Autism.
There's nothing wrong with any of the above. I myself have two children who are autistic. But it is a lot of work, every day, between therapies, appointments, and advocating for your child. You have a good taste of it with Shane, but unlike Shane, you just cant leave a child for hours while you do school or gym. Shane cannot care for a baby. You cant even set a newborn on his lap bc he couldnt hold it safely. Forget bottle feeding it.
He can never give you a break in the morning after you have been up with the baby all night who was screaming because he is in his purple screaming phase. Which can last ages, by the way.
I just hope they finally get help (and let others know its okay to have help!) before she gets pregnant. (Hannah, it is SO HARD TO MOVE when you're vomiting in the early weeks. Its almost worse once youre 7mos along or more, as you have a very heavy watermelon sitting deep in your hips. You wont be able to carry shane then, not safely!)
