This bit of news couldn’t have come at a better time. After a long night of pretty bad pain and not being able to sleep through it I found out today that my application for disability was approved.
It’s bittersweet. Had it been denied I would’ve lost the last shred of hope that I had of ever being able to live on my own and be somewhat independent. Having it approved is a huge weight off of my shoulders. On the flip side; I’m 18, I should’ve been applying for college, not disability. But I can’t change that, so I’m focusing on the positive side of this right now. It means that eventually I can rent my own place and maybe start to remember what it feels like to live life a little bit more. I’m hoping that when I am on my own, responsible for my own home, that I’ll feel a sense of purpose again, like there’s a reason to get up in the morning.
My mood has eased off a bit which you may have noticed by my writing. The news helped and though I didn’t get nearly enough, the sleep that I did get seemed to help a lot too. My mom’s situation got worse this morning, but since then she’s been feeling a bit better. Eventually I’ll explain exactly what it is she’s going through.
I also want to direct you to a blog post by one of my favorite bloggers. It’s for a mom and her baby son, Danny, who has a severe form of Marfan Syndrome; neonatal. He’ll be needing heart surgery soon and some awesome members of the Marfan community are raising money for those expenses (travelling, hotel, food) as well as to help them get to the U.S for the Marfan Foundation’s annual conference. They’d get invaluable consultations with some of the leading experts in Marfan syndrome as well as being able to attend many educational workshops and meet others sharing similar experiences. You can find Danny’s story here on Musings of a Marfan Mom and you can learn more about the fundraisers here.