Time is a funny thing. There are moments when time can seem to drag by, move so slowly that an hour feels like all day or at least five hours. Then there are other times that five hours goes by and it doesn’t even feel like one.
Days can be funny in that way too. No one wakes up thinking today is a good day to end up in the ER, but sometimes that is just how the day rolls out. Friday was one of those days. The morning started out with a visit to an orthopedic clinic for my youngest son. While there we were told everything looked good and that his braces were helping him. There were no concerns. “We’ll see you in a year’s time, unless something comes up,” is what we were told. We had a fun activity planned with friends for Friday afternoon and evening. An epic water balloon fight and pizza. It was highly anticipated and was going well. Everyone was wet, laughing, and having a great time - you know what summers should be.
While filling up a water gun, I had my head down and back turned to the group. I quickly stood up at the sudden shriek of pain from my youngest son. I knew almost instinctively this was going to be bad. It was the kind of scream of pain that you know he’s not faking or overselling. A couple of quick steps and I was right in front of him on the ground with him starting to access the situation. Trying to get a ten-year-old to calm down enough to actually tell you what hurts and where is a feat all on its own. It was hard to tell if something was truly wrong just from looking at his leg and ankle. He was born with bilateral club feet and so his ankles and feet look a little different than everyone else’s. Between sobs and cries, we were able to determine it was his lower right leg. I got him to stand and as soon he tried to take a step while I was holding him up, we saw his leg sort of give way, at least that is how it look. I grabbed him up and headed for the house.
Both my wife and I are now frantic. She thought the whole shin had kind of bowed. I wasn’t sure what I had seen, I just knew he couldn’t put any weight on his leg. The crying was now nearly inconsolable. That makes thinking and making rational decisions a fun activity. Luckily between the two of us, we were able to make decisions and drive the short way to the ER without putting others in harm’s way. After a little over an hour of being at the ER our son was finally given some medication to help relieve the pain. That was a very long hour. Two or three hours after that we left with his leg splinted, some crutches, I was sure he wouldn’t be able to use, and the onset of exhaustion.
A person might be thinking - exhaustion - really? That seems a little much for just a broken leg. And normally I would agree. However, this has been a long arduous ten years at this point. When my son was born I was in the NICU with him within 20 minutes of his birth. He was sluggish, not very responsive and his O2 levels kept dropping. We didn’t get to bring him home until eleven days later, and he came home on oxygen. For most of his life, we have spent a great amount of time caring, worrying, praying, and struggling to get him to this point. I say this not looking for anything other than understanding. I love my son. He is a fighter. He is happy. He has a larger-than-life personality, and he lights up whatever room he is in. Being his dad is an honor and a struggle at the same time. Every day is a learning opportunity. During those eleven days spent in the NICU, we did not even come close to having an understanding of the difficulties he would be facing and that we as his parents were taking on. We just knew that he was struggling to gain weight. He was listed as “failure to thrive”. That term doesn’t really do justice to the situation.
During the past ten years, we learned he has a genetic condition which causes low muscle tone. It sounds innocent enough, but what that really means is that body-wise, globally everything is weaker than it should be. There are muscles that control how the bowels work and the lungs and so on, so when they say low muscle tone, that means everything is a struggle for him and his body. Walking is harder for him because the muscles and ligaments that keep things in place for me and everyone else not affected by this condition don’t do that as well for him. That means he tires more quickly, he can’t carry as much weight (groceries in bags) and he can’t run or move as quickly as his peers or those younger than him. Which brings us back around to the epic water fight. He just couldn’t move himself fast enough to not get hurt. If he falls, he falls hard. With his diagnosis and condition, the sensation of falling or being off balanced is delayed in reaching his brain, which means he can’t react to it most of the time. So, he just falls and falls hard, as if he was on ice - every time.
As parents we are aware he has limitations, and we know that there are certain things he may not be able to do, do as quickly, or as well as others his age, but we don’t always know what those will be ahead of time. Somethings I think he won’t be able to do he surprises me by being able to do them. A recent example of this, is with the broken leg, we were able to get a wheel chair for him, since the crutches just weren’t going to work. I thought at least we’ll be able to push him around the house easier, get him to the restroom and so on. In my mind, I figured we would be moving him, and I never even thought about him being able to move himself. Within minutes of having the chair delivered, he was in and rolling himself around dodging objects, backing up, making corners, and cracking jokes - “Mom, I’m on a roll”. Why did it not occur to me that he could potentially move himself? I think mostly because the crutches had been largely a failure, and now I’m gun shy and I find myself being overly protective. I suspect part of feeling like I failed him by not keeping him from breaking his leg. That’s just how it goes. I have to give him room to try new things and potentially fail. Something that all parents have to do, I’m sure we all struggle with finding the right balance.
Yesterday, (Wednesday) we saw his orthopedic specialist who looked at his leg, ankle and foot, and removed the splint and put him in a cast. His foot has been re-positioned, the bones have not moved and are starting to heal. We are now in a holding pattern for the next three to four weeks. We don’t know exactly what that will look like and in getting him around I’m sure we will learn a lot of new things - things we have probably never stopped to think about. Life with a child with heightened needs is interesting, sometimes difficult, and highly rewarding. It feels like a balancing act, being there and helping with things he can’t do, pushing to help him be as independent as possible, and doing our best to keep him largely safe, but let him experience new things. Some days are big wins, and some are not. There are times it’s hard to believe it’s been ten years, and other times it’s surprising it’s only been ten years. I think most of the time it’s the former. The days, weeks, and years seem to be going by too quickly and in just the blink of an eye he’ll be looking at high school. I don’t know what the future holds, but I try to remember every day is a new day, a new chance, and I hope to not squander it.
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