Sunday, March 18, 2012

A Shell.

Neuromuscular scoliosis occurs with some types of neurological disorders, including spina bifida, cerebral palsy or muscular dystrophy. In these instances, the children’s trunks are not strong enough to support themselves fully, and the spine curves into a long C-shape.

Got it. Dermot has this. A 50 degree curvature in his spine. "Severe" in the words of the first orthopedic surgeon we've ever met.

He was a kind man, by just looking at him you would probably guess he was about twenty-two years old. Of Asian descent, no visible wrinkles and wearing a stylish outfit (as far as doctor's go). He carried himself in a hurried fashion as if he was late for his chemistry final. Having already been briefed by his resident, he sits down at the end of the examination table, grabs Dermot's feet and begins to maneuver Dermot's limbs in a peculiar fashion. Then he asks to have Dermot sit up, slightly offended I immediately point out the obvious fact that Dermot does not "sit up". The doctor asks that I support him, which is asking a lot, especially in the now very crowded examination room.

Dermot sits up, with a great degree of assistance from me, and attempts to lift up his head to look around. No such luck. Dermot's long nearly six-year old body curls forward, he slumps his head nearly to his lap. While he's sitting like this the doctor talks about the many faults of his posture, comments on his lack of head control and the fact that his head leans to the left side, all the while Dermot is drooling profusely on my hands as I try to support him. "Are we done yet?" I ask. "Oh, yes. You can have him lay back now, sorry" says the doctor.

Then he begins to talk about the severity of the curve in his spine, why it has happened and what they can do to slow the progression. A brace is highly suggested. "Really?" I ask. "Can't we modify his wheelchair to a more rigid seat?" Hoping I'll be able to talk him into this. I let out a heavy sigh. "I'm afraid that treatment won't be aggressive enough for him" he answers back. Then images of a turtle's shell wrapped around my little boy twenty four hours a day, pop into my head. I fight back the tears. I don't normally have an aversion to crying in the presence of doctors, but this guy, he's new and I'm still trying to talk him out of his decision. The tears seem to soften his demeanor a bit and he continues his explanations in a soft, soothing voice that calmed me. He looked me in the eye, which doesn't always happen with doctors, and I believed him.

He walked us through the X-rays, showing us the dramatic difference in Dermot's spine in the last year and I knew. The turtle shell was in our future. I guess I can be grateful that he didn't suggest surgery right now, but I know that's in our future someday. For now Dermot will have yet another custom-molded plastic piece covering another part of his body.

Imagine for a moment tucking your son into bed. Remember to place the leg immobilizers on each leg with four Velcro straps for each leg. Don't forget to plug in his feeding pump to his mic-key button so he'll be properly nourished overnight. Place his neoprene hand guard on his left hand so he doesn't chew his skin until it bleeds. And now, carefully lift his growing body inside the shell and put his jammies on.

For tonight, Dermot is free. No equipment, just the feeding tube. I'm his mom. I can give a break tonight.

Sunday, March 4, 2012

This rug.

I thought as I awoke this morning that the day would go as planned. We'd bring the whole family to hockey to watch Owen, return home for lunch and pass the day away by watching the NASCAR race. If you know us, you'll know that this is a Sunday custom in our family. Things were going off as planned. But then I went out to find a rug.

The rug we have in the mud room entrance has been stepped on far too many times to count. It was the entry way rug at our first house. I purchased it without even glancing at the price, from the Pottery Barn catalog. I was pleased with its appearance when it arrived via UPS a week later. It welcomed you into our home. Many of you stepped foot on it. Then we moved to Edina.

As I write this I am trying to recall where this rug was in our soon to be dream home. Ah, yes. I remember now. I placed it temporarily at the top of our stairs. It didn't go well there but I knew that we were planning to remodel soon and I would get a new rug. Then our plans changed and the rug stayed put. At the top of the stairs at the landing pad for the bedrooms. I remember a picture I took of Ryan sitting up on his own for the first time on that rug.



A year and a half crept by and we moved to our new house. This is house is five blocks away from our old one, it's in the same neighborhood but is much larger and more accessible for our new reality. The rug moved with us.

Because we owned two houses, we decided to move in without too much fanfare. No kitchen updates, no new tiled entryway, no remodeled guest bath, and no new rugs. We worked with what we had. To be honest I was so thrilled to be in this new house I got used to the questionable decor choices made by the previous owner. I painted a few rooms with my family's help and that was it.

Last week after a big snowfall I decided to run on the treadmill in my basement and watch the Nate Berkus show. I got inspired to "spruce up" my entryway. I looked around for things I already had that I could use in different places and had a plan. But this rug, this rug was not right. Is was the right size, but not the right color or style. 

I went searching today for another rug. I was convinced I'd find one at Target, nope. Tuesday Morning, nope. Marshall's, nope. JC Penney, nope. Macy's, nope. I came home defeated. Without a new rug. My whole attitude had changed. I was angry that the dishes weren't done, angry that the toys were everywhere and angry that I still had this same rug.

I know this rug looks perfectly acceptable in the mud room entry, but I'm done with it. I'm done with remembering where it used to be, who used to step on it and who doesn't step on it any longer. And I was done with it TODAY, not in a few weeks when I can afford to buy a new one from Pottery Barn or Crate and Barrel, I wanted it gone.

Now I sit on my ten year old couch and stare at that rug and I am fully aware what I am doing. This afternoon, I wanted to go out and pick exactly what I wanted and buy it, and throw away another piece of my old life. If I can't do it all at once, it will have to be a piece at a time. Things around me that remind me of how things were, are hard these days. 

I'm taking delivery of a wheelchair van this month to replace my other minivan, Dermot's wheelchair is getting an "upgrade" to a rigid shell rather than a soft molded seat, and my boy is getting too big. Too big for me to carry, almost too big for me to hold and too big for me to lift. All of this overwhelms me sometimes and I look for little things I can control or change, like the rug in the entryway. 

Grief visits me often and then it leaves. Hopefully the rug will leave soon too.