RAW HONESTY HERE

Want to know why I haven't blogged about SMA lately? Because I hate it. Why would I choose to talk on and on about something I totally despise. I try and try to be positive. I truly cherish every moment I have with Colby. But some days, the reality of it all sneaks up and bites you right in the butt. The sinking, overwhelming scariness of it all. The thought that “technically” Colby is living on borrowed time is hard to take. That's bad enough. But SMA is a progressive disorder, meaning Colby gets weaker and worse over time. Ain't that a bitch?! It's hard enough to handle in the first place. But as time goes by, I see Colby gradually losing muscle mobility and strength. He can't stay off his vent the way he used to years ago. I hate it for him. I just hate it.

I'm not looking for pity, and I certainly don't want anybody's sympathy. But sometimes you just have to cry it out. I cry for the life my son was supposed to have. I wonder so many things. If he could eat, what toppings would Colby like on his pizza? What sports would he have played? What music would he favor? It's hard for me to tell. He's 14 now and should be wanting to get away from his mama, being with friends. Colby doesn't have a lot of friends. Most things he gets to experience are with me and a nurse. That's not the way it should be. Not even close.

And no, I'm not sitting here typing this and bawling my eyes out. Actually I haven't done that in a long time. But I figure I'm due soon. I just love it when other people say wow, I don't now how you do it. Well guess what, I don't know either. There are days that dealing with SMA smothers me. I can't think straight. I can't imagine moving on if anything ever happened to Colby. I can't imagine doing this another 14 years. Colby keeps getting bigger and I keep getting older. Both of those are scary thoughts. Trust me, people, I'm scared, exhausted and constantly worried about what the future holds for both Colby and me. But I don't know what else to do except push forward. Colby tries his best every day (except for schoolwork haha.) Every single thing that child attempts to do, even breathing, is a struggle. Helping him along the way, providing him with a healthy and happy life, is a job I take very seriously. I'm blessed to get to do that. I just have to remember that sometimes it's going to be hard. It's supposed to be hard. Parenthood is difficult. Raising a child as a single parent is really difficult. And being a single parent to a special needs child is really, really difficult. Today is one of those days I struggle to understand it all. I need to look at my calendar and schedule a little me time. Take a moment, cry it out and then suck it up and move on. Because that's what I've done and will continue to do for my sweet boy. Even though it terrifies me.