For many years, after we had gotten our footing, our life was much like team rowing. Difficult and tiring but with the right rhythm and coordination it was stable and consistent. Annie and I had a process and rhythm. We learned the right way to do things and more importantly, Nate's condition remained consistent. We understood his sleep cycle (mostly), we knew what his oxygen number and heart rate would be every night (important numbers for SMARD kids) and we knew what his physical capabilities were.
But in the last four months or so it's like someone dropped a few narcoleptic Tongan wrestlers in our boat throwing everything into chaos.
|Nate got a lot of cousin time with family in town.|
I don't know if ulcerative colitis is the cause but that's about when things started going pear shaped. The steroids Nate was on as his body healed from the flare up had some negative effects. The upside of the steroids was that he was always SUPER chipper. The downside was that his chipperness extended into the middle of the night. Nearly every night Nathaniel would be awake anywhere between 2 to 6 hours and ready to play. We were not. We were never ready to play. This lasted about 2 1/2 months and towards the end his oxygen numbers and sleep time breathing changed.
We don't know why and neither do his doctors but Nate started putting up lower oxygen numbers and would experience sudden drops. This would send his alarms off waking us all up and then he would quickly stabilize. It was during this time that he got sick. This year had been relatively mild in terms of sickness but this one was a doozy.
Nate was out of commission for about 2 weeks. As we constantly monitored his ulcerative colitis, tried to manage his sleep issues and worked to figure out why his oxygen and breathing had gone crazy, we now managed a pretty terrible cold. And that wasn't even the worst part.
I remember putting Nate in his wheelchair after he had mostly recovered from his cold and noticed something looked off. Nate's arms were just dangling there. I asked him to lift his arms up. He struggled and twisted but couldn't move his arms.
I was devastated. I still remember (probably because I still feel it) the sickening, icy feeling explode in my stomach.
Nate had always been able to lift his arms up to about shoulder height. He was strong enough to play with toys and manipulate an ipad.
That was all gone now. We knew it and it wasn't long before Nate understood what it meant.
I don't know if a 6 year old can actually be depressed but it seemed like Nate was. For a couple of weeks he was angry, sad and not interested in doing anything but laying on his back. It was, still is, heartbreaking.
I don't like writing blog posts about this kind of stuff. I don't like it for two reasons; I don't like writing to the world about such personal feelings and it's too easy for this kind of dialogue to come off as self-pitying. And when so many others have had to deal with so many harder things than us it feels embarrassing.
But I do want to put this stuff out there because I think it is important to see what goes on with families that have disabled members. Just like I think it's important for Nate to get out of the house and not only experience things that may be difficult for us but for other kids to see that people like Nate exist.
We've been working hard with him and trying to build his strength back. He has made progress but is still only about 50% of what he used to be. Mostly we just feel drained, but every few days or so I'll see Nate try and do something he used to do easily like pick up a Goldfish. And he'll struggle to pick it up and if he does manage he will wriggle his whole body trying as hard has he can to get it to his lips. This breaks me. It's a new status quo for us and it feels bleak.
We don't know if he'll ever get that strength back but nothing can keep Nate down for long. He's excited out of his mind for summer and he has a new baby cousin. For anyone who doesn't know Nate's feelings on babies, this should help:
Nate is also up to his old tricks again. This time he invented a spoof of Teenage Mutant Ninja Turtles, Teenage Mutant Ninja Genes. Here's the theme song he made.
So yeah, Narcoleptic Tongan wrestlers. We still don't know why Nate's breathing is so different, his sleep patterns are erratic, his colitis always seems on the verge of flaring up and now he's got the arms of a T-Rex. We're off our game. Whatever develops though, as long as we've got Nate making up theme songs to his own shows, we'll be okay.