It may look easy, but it’s snot

Nov. 20, 2011

Every task for a child with PMG is a challenge. The time and repetitions that it takes to convert an action with a habit/reflex can take 10 times (or more) longer than the typical child’s learning curve. PMG kids are also more likely to lose skills they don’t actively use.

That’s one of the reasons we try to keep Nathan constantly moving forward, pushing his limits. We hate the thought of sliding back knowing how much hard work he’s put in to get to learn what he can do now. The past two weeks of conductive ed have been a lot better than the first even though Nathan has been battling a head cold.

We’ve tried to get him as much sleep as possible. Sometimes he’s taken advantage of it, other times he things he’s had his own agenda. We even had one day what I would have considered as a “best-case scenario.” He had a good day at school, stated awake the entire trip home. Allowed me to siphon his nose, then drank a full cup (and more) of Boost, fell asleep until it was time to pack up the car. He slept for almost the entire hour-long trip and then walked into Brighter Beginnings.

Each day he seems to look over his shoulder before walking in as if to say, “you realize I’m running on fumes, but if you want me to work I’ll give you my best.” Once he crossed through the threshold he mustered as much strength he could, and would come out 2 hours later, a stronger, happy guy.

I haven’t said anything lately but I’m so proud of how hard he works. Hearing him through the walls, even through the runny nose, sniffing the whole time, there wasn’t a whimper or whine. And when the conductors came out with him, they had nothing but praise for how hard he worked.

He even had such a good day, the conductor came out and had me go in to see him standing, completely bearing his own weight for several minutes. He looked at me and smiled, almost not knowing how hard he was working, and how many others had doubted he could do anything like that. We’re getting ready to enter week 4 (of 5) of conductive ed, and hopefully over the worst of the head cold.

We had a very special surprise for Nathan this past weekend, a chance to catch up with Jessi, one of Nathan’s favorite college girls (although now graduated for two years.) We only got to spend two hours with her and husband Jack, but it was a great way to kick off Thanksgiving week. The last time Jessi saw Nathan, his impressive feat was walking 50 yards to the street corner and back. She had read about him making it completely around the block, but was even more excited with some of the other things he was doing, that he hadn’t even started trying the last time they were together. You’d think that with all the driving we’ve been doing that a trip to South Carolina wouldn’t be a problem for us, but as of yet a road trip of that magnitude is still a ways away.

This week will bring family gatherings on both sides of our families. We’re excited about seeing everyone, and giving thanks for the many blessings we’ve experienced over the last year, and those yet to come. We try not to take any of these gifts for granted, and it’s amazing to think where we’ve come from to where we are now.

I’m constantly reminded that if I put half as much effort in to Nathan as he puts into all of his activities, we’ll have even more amazing things to show Jessi and the world the next time we meet together.

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