It's something the kids have wanted for years, but were unable to have due to a serious lack of space in my single-mama condo. When Hugo and I hunted for houses last year, we only considered ones with yards big enough to accommodate five kids and a hundred pound Labrador. The house we ended up buying barely met our criteria, but even still, I was able to envision a trampoline living happily back there.
As this Christmas approached, I got to thinking that this could be The Year of the Trampoline. But, would it be safe for Lee?
He was born with a Stage 1 Chiari Malformation (pronounced key-ARE-ee). Something that was discovered in July, 2010, during an MRI and CT Scan. He had lost consciousness and had been taken to the ER where they conducted tests to determine what had happened.
I had never before heard of a Chiari Malformation, Stage 1, or otherwise. We were taught that this is a birth defect, where the back portion of his brain dips down into his neck, rather than living all nestled and snug in his head, within his skull. Thankfully, a Stage 1 Chiari Malformation poses fewer risks and effects than, say, a Stage 3. But still, Lee will have a life of headaches, he will never play tackle football, or any contact sport for that matter, and amusement parks are the devil, with all of their G-Force, and whip-lash enducing rides. He can go on some, but only if it's the sort of ride where someone can hold his head against their body for support.
Still, his neurologist encourages physical activities that strengthen his neck muscles. Maybe some gymnastics, as it can teach him how to fall, while building strength in his upper body.
So, what about a trampoline? Or riding a bike? Or skating? All are risky. All are potentially hazardous, as a sudden fall can compromise his neck, and therefore jeopardize his brain, and all of those precious nerves that reside within.
To make matters worse, for whatever reason, falls seem to trigger seizure activity. Half of his doctors say that there is no connection between his Chiari Malformation and seizures. They believe that seizures which were followed by falls were merely coincidental. But the other half say that there most definitely is a connection, and especially when you consider that he has had a seizure after falling at least 5 times in the last year.
As a mom, I find that all of this ambiguity is maddening. Where do I stop letting him be a normal, active little boy, and when do I begin treating him as though we were a delicate flower? Because he is precious to me, and I will do anything in my power to protect him. But, my need to protect his mind is as great as my need to protect his body. If I transpose my fears over what might happen, or what might be a risk, onto a 7 year-old, what will the results be? Would we have a little boy who is safe from a real danger, or will we have a little boy who is kept from natural developmental rites of passage? Kept from things like bike rides, or scooter riding, or climbing, or even running, because if I wanted to get crazy I totally could. Running down a hill, for instance, could easily whip his neck.
If he were obviously disabled, we could deal with it, as many do every day. But since he looks, and seems to be a typical little boy, and since his doctors aren't even in agreement over what his risks really are, I find that I am having a hard time keeping him down.
So, we pondered the trampoline, as in addition to it being something the kids have always wanted, it could also be a strengthener. It could help him develop better balance, and awareness of his body, and the workings of his muscles.
I sat with his neurologist at his last appointment in September, and I specifically asked her about the issue of the trampoline. Just as I had specifically asked her about the issue of the bike, before. Like with her answer about the bike, she winced, whined a questioning sigh as she thought about it, and she came back that it would be OK, but only with some strict guidelines. First, there absolutely has to be a net surrounding the perimeter of the trampoline, keeping him from being able to fall off. A fall from the height of a trampoline, down to the grass, could pose life-threatening risks if he were to fall in such a way that his neck was bent, or dealt an impacted blow. Secondly, there would be no flipping, of any kind, whatsoever. Only feet and bottom bouncing.
We made the decision to give the thumbs-up to Santa. His elves helped to put it together on Christmas Eve while 4 of the kids were at their dad's, and Danielle was at work. And Christmas morning, a very happy little boy announced to his brother and sisters that Santa had brought a trampoline, and that it was in our backyard. This discovery was made after he checked to see whether the reindeer had eaten all of their reindeer food on the patio.
He had a successful visit at Children's Hospital Los Angeles last week. I didn't post about it then, but I'll leave you with some pictures. He slept soundly when they needed him to. So well, in fact, that the technician was able to test him throughout different stages of sleep. We are still awaiting the scheduling of his MRI. These tests, hopefully, will shed more light on what is going on with our little guy. We will get the results January 12, at his follow-up appointment with his neurologist.
He had another seizure at his dad's Friday night, but thankfully, it was mild.
I'll leave you with some pictures of his EEG, as well as a picture of Lee jumping on the trampoline this morning.
Wonderful post. I am reminded of something I read in "Velvet Elvis" that faith is a lot like a trampoline. It bends, it flexes, it moves. No matter what weight you drop on it, it will come back to its original state.
ReplyDelete-Jeremiah