My heart is heavy. A few days ago, driving home from therapy actually, I leaned that one of the (many) children I know, had died. Someone asked me “what happened?” Nothing happened. It was his time. He was on hospice, he was declining, but it hurts. I’m not his family…but I am within his community. […]
Your heart is bound to break when you live in the special needs world Read More »
My husband took my kids to the park the other day. While they were there, there was one other boy with his mom. If you don’t know, both of my boys have a very rare form of muscular dystrophy, and have a variety of medical equipment for each of them. The boy at the park
Your kids wins are your wins too Read More »
As much as I wish I could successfully ignore things, as much as I wish I could just…wish the pain away, sometimes you just can’t. Sometimes shit just sucks and there’s really not much anyone can do about it. That’s where I’m at now. Right now in my life, shit just plain old sucks. And
Sometimes things just suck, and there’s nothing you can do. Read More »
I’ve been told “go home and enjoy them” more times than I can count. I’ve been told “there’s nothing we can do, we’ll know more as the disease progresses” over and over. My future, our future, is uncertain. I grieve the memories I will miss out on. Will they live long enough to really….live? Does
Missing out on memories Read More »
He’s only 4. He’s brilliant and capable. He can drive it himself. Today when he woke up, he knew it was the day. He’s been eagerly awaiting this day since he first got measured, first knew he was getting one. It was a “milestone” I had put off. My son needing a power wheelchair felt
Today, he got his wheelchair Read More »
I have a hard week coming up. Most of my weeks are hard to begin with, but next week we’re going to be entering some new territory, and I’m just not ready for it. I don’t know how to talk about it, I don’t think I even know how I feel about it. The reality
I don’t always know how to say how I feel Read More »
As I’ve mentioned, I didn’t have the easiest time growing up. My sister, who is 9 years older than me, and the oldest of 3, was incredibly abusive towards me and terrifying to live with. She has a whole alphabet soup of mental health disorders which were all unmanaged and untreated, despite my parents (seemingly)
The road so far… part 1 Read More »
