I realize we’re a month into the New Year, but since this is the first regular post of the year, this is my first opportunity to wish you all a Happy New Year. Hope your year is going good so far.

I don’t have much to post this month, but I’m sticking with my routine of posting once a month. I may switch to posting towards the middle of the month, though. It’s sometimes hard to post at the end of the month because that’s when I go through our monthly finances. If there’s not much to post about for February, I may push back into March. We’ll see.

Health

Winters are usually pretty rough for James. He doesn’t handle the cold too well. He doesn’t handle the hot, humid summers that well, either. If only we could move someplace that was a nice 70 or 75 degrees year-round, I think that would be perfect for him. I know I wouldn’t complain.

The second week of January he had a rough week at school with respiratory issues. Stacy decided to give him a three-day weekend. That’s exactly what he needed. Some extra time to just chill and catch his breath, so-to-speak. She truly is an awesome mom. Maybe that’s just her maternal instinct. As we get older, I worry more and more about what I would do if something were to happen to her. I’d be lucky if I could take care of him half as good as she does. I’m sure I’d learn because I would have to.

There’s also the financial part of that, too. If something were to happen to Stacy and I was James’ sole care giver, how would I be able to work? And if I am unable to work, what do we do about insurance? I’m going off on a tangent here. Perhaps this should be the subject of a separate post. Let’s get back to the current subject, James’ health.

Since James doesn’t know how to blink, and rarely closes his eyes (even when he sleeps), his eyes are constantly exposed to the environment. Any dust or dirt or lint floating around in the air has the potential to fall into his eyes. And they’re not getting lubricated like yours and mine do when we close them or blink, so they get dry. We try to keep them moist with eye drops, but that doesn’t seem like it’s enough. His eyes still get dry to the point where they develop a film over them. Stacy has been good at trying to remove the film, without touching his eyeballs, but we’ve still been looking into other options.

In talking with the ophthalmologist (aka eye doctor), she had a couple of ideas. One was to sew the corners of his eyes shut which would lessen the amount of eyeball exposed to the elements. While it makes sense, we’re not too sure about this. This may sound silly, but we think he would look weird. The kid already has enough reasons for people to stare at him, do we want to add one more.

I know, I know. We should care more about the health of his eyes than what others may think. The eye doc had another idea that we decided to try first.

They are 1.8-gram weights that stick to his eyelids to try to close them and protect his eyes from the elements. He will still be able to open his eyes, but these will help close them when he is resting or sleeping in his chair. We’re going to try them in the evenings when he’s usually worn out from the day and sleepy.

As a final health note, we had little bit of a health scare on Monday. School staff get tested for Covid once a week and James’ one-on-one nurse tested positive. She wasn’t showing any symptoms, so we’re hoping it was just a false positive. Stacy has been testing James every two or three days and so far, he has been negative.

I don’t even know what symptoms James would have or how severe they would be. He got both the first and second dose of the vaccine last year, and just got a booster in early January. All we can do is keep an eye on him, but we do that anyways.

School

James got a much-needed haircut before he went back to school after the holiday break.

Stacy likes to leave it longer on top and shorter on the sides. I think it looks good, but I have to admit that I’ve always been jealous of his hair. It’s so thick and it grows like crazy. Stacy and I always joke that our hair has been falling out since he’s been born—because of the stress—and it must just fall onto his head.

Not too much to report from school except that it must be guitar month. The only pictures that the nurse shared with Stacy are of James playing the guitar. We may have to buy him one so that him and I can learn to play. I’ve always wanted to learn. I started teaching myself to play when I was in high school, but then things happened, I lost interest in a lot of things that once made me happy, and never found my way back to learning to play the guitar. Maybe this will be an opportunity to do so.

International Day of Acceptance

The International Day of Acceptance is celebrated each year on January 20th. It is a day to promote social acceptance of those who have disabilities, and to honor the founder of 3E Love, Annie Hopkins, who passed away on January 20th, 2009. She was only 24 years old, but she managed to touch and inspire so many lives in such a short time.

“3E Love is more than living disabled but is simply about living. Everyone has the freedom to live their life. We challenge you to do what you love because you’ll meet some amazing people along the way, and that, our friends, is how you’ll enjoy this ride that 3E Love calls life. Embrace diversity. Educate your community. Empower each other. Love life.”

~ Annie Hopkins ~