Friday night, 8:20. I'm in Colby's room typing on this very petite keyboard on this small keyboard. Yep, my computer is definitely effed up. Don't know what else to do except get a new one. So if this blog is full of typos, forgive me and deal with it. Remember, tiny keyboard. Colby is lying in his bed, AFO's and hand splints on. Trying to get him, again, to watch the first Harry Potter movie. He's not having it. We just read the book, why doesn't he want to watch the movie?! Maybe he doesn't like English accents? Who knows. It's at the point where the talking hat is picking which house the students will go. Colby really doesn't care. I should post a video of him whining and looking everywhere but the TV screen. Then you would understand how I can tell what Colby is trying to tell me most of the time. Hold on while I find him something else. Okay, let's see if he'll tolerate Ice Age until I can get this blog done.
This week has been full of ups and downs, with a focus on downs. I know I shouldn't focus on the negative. I know I have many blessings in my life, and when you "look at the big picture" we don't have it half bad around here. There are a lot of people around me who are going through issues much more serious than our problems currently. I have friends who are missing loved ones who have passed away within the last few months. I wish I could find something to say to help comfort them. Seems I always fall short. I have friends going through surgeries. The nurse who goes to school with Colby has been sick. He missed 4 days this week, meaning Colby has missed school and I had to miss work today. Today is a hard day for me. November 14, the day we received Colby's SMA diagnosis. Very hard to believe that was 12 years ago. From that day forward, our lives were changed forever. I'm not saying changed for the bad. There have been lots of joyful, wonderful moments over the years. Been a lot of complicated, difficult ones, too. So here I sit, in this little bedroom in this little apartment, on this little keyboard, a single mom to a special needs child. Wow, didn't see any of that coming my way. Every November 14 is hard on me. I say I won't let it get to me. It's just another Friday or Tuesday or whatever. But we all have days, joyous and shitty, that stand out, and today just happens to be a shitty one for me. Glad this day is almost over.
We (the SMA community) received a shock this week. There is a sweet, wonderful family that lives up East. They are mourning the loss of their son. We're all so saddened and shocked to hear of his passing. This family is very active in the SMA world. I cannot find enough "good" adjectives to describe them. She is the best mom EVER because the boy who passed away had SMA Type I, just like Colby, AND an older brother with SMA Type I also. I have learned so much over the years from this family. By following their lead, we've learned how to "live" with Colby's disorder, not just exist with it, trudging through life. This family took their boys to camp, parades, outings, school, etc. Always so willing to offer advice and support to other SMA families. I don't know the details. Not really sure I want to know. All I know is it sucks. I wish I could do more. I honestly can't imagine what this family is going through. I know the big brother will miss his little brother terribly. How do you even begin to move forward after such a loss? I have no idea.
I'm not going to lie, I just wanted to check out for a couple of days. Wanted to get in my van, start driving, and keep going until I had no gas.Wherever I ended up, fine. But get real, I wouldn't make it 2 miles up the road without my sweet boy as my sidekick, so that wasn't an option. Then I thought, screw it, I'm going to get drunk, really, really, snot-slinging drunk. Once I gave it a little more thought, that didn't seem like the answer either. What they say is true, hangovers are a bitch when you're over 40. Plus there's been a lot of time we haven't had a nurse this week, so I really needed to be on my toes so I could care for sweet boy. Plus I thought maybe a tribute to this wonderful SMA family would be to cry when I needed to, but keep pushing forward. Be the very best mama I can be for Colby. Can't do that if you're drunk\and or hungover. Trust me, I know, learned that several years ago. So I've spent extra time with Colby. Not only being in the same apartment with him, but taking the extra time to really talk to Colby and spend that QT with him. That felt like the right thing to do and that's what I've been doing.
Praying that the new nurse shows up tomorrow at 8AM sharp. Not in the mood for any nursing BS so for here sake and mine, she needs to be on time and ready to learn Mama's way of taking care of Colby. She did a shadowing shift last weekend to get a feel for the in's and out's of Colby care. I didn't spend a lot of time with her because I was at work. We shall see.
Okay, time to get kid in bed, then I'm going to take a steaming hot bubble bath. Because I deserve it. More blogging soon Hopefully it will be a bit more upbeat.
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