Wednesday, May 14, 2008

Sweet Child of Mine

So, when it rains, it....I'm too tired to finish the end of that sentence.

Niko has been doing really well, and we even flew to Boise for a family baptism. I was really hesitant about taking broken-legged boy on a trip, but it was good for all of us. He needed diversion and I needed a break. I also ran my first 5k, and have decided that it was a success. I couldn't run the whole thing, but I've been ill and have decided to be kind to myself. Even though there was a lot of walking involved, I am proud to have finished. It also renewed my dedication for my 10k in August. Along the Extraterrestrial Highway at midnight, btw. I'm going to run with a headlamp and googly antennas.

You know. As true aliens do.

We were excited to send Niko to school on Monday in his shiny new Super Wheelchair. I expect it to make Transformer noises as it changes from position to position. I called Transportation, and they sent a bus with a lift. We loaded Niko onto it and waved him off to school.

I get a call later from the nurse, saying that I have to pick up Niko. I am carless during the day, but thank heavens Dad was down and he drove me to the school. Then some kind of bizarre impromptu meeting occurred.

Niko's wheelchair didn't have a seatbelt, which constitutes as a safety issue. I'll definitely give them that! What five year old wants to sit down quietly? But suddenly it became a matter of: the doctor didn't send the correct note, and they didn't know exactly what his physical limitations were. Can he sit in his chair all day? "Yes," I said, but that was apparently the wrong answer. "Or you can lie him down on the floor, if that's easier," I said. But they can't LIFT him, they said, and it was like being tossed down the rabbit hole, where everything I said was being refuted. What IS this? The wheelchair is too big for the classroom, and it's bulky. It doesn't belly up to the table, and it doesn't have a tray. It isn't conducive to learning, and there are only a few more weeks of school left, so maybe I would just consider...

And suddenly I got it. I got it, and I would have understood it a million times faster if my mind wasn't mush from everything that has been going on. My child breaks his leg, and it is too hard to accommodate him at school?!

I'm standing there with Nina on my hip, and Niko gazing up at me from his wheelchair. I'm surrounded by three women who have always been so kind to my son, and I have to tell you that it felt like a betrayal. I thought a lot of things. I thought, "You want me to keep him home?" I thought, "Great, we just went through this at church!" and "If a typical child broke his leg, would you kick him out of school?" and a myriad of other things.

What I SAID was, "I am just so tired," and I started to cry. Score one point for The Nasty Cruel World, and zero points for Team Nikolai.

So we had an appointment with the doctor today, and I was going to get a note to explain EXACTLY what Niko could and couldn't do. I think the tears were a bit unnerving to them, and they definitely were to me. I am exhausted. I am sick. I'm seeing my own doctor tomorrow to see if my "little sugar problem" is going to be lifechanging or not. I am too weary to comprehend much right now. I don't know if I should run screaming to the district or if I'm somehow in the wrong. I have Niko's IEP on Friday (Oh joy) and I know that I'll definitely bring this up then.

Turns out that it really doesn't matter. Niko's bones have once again shifted inside of his cast, so in two hours we take him in for outpatient surgery. They'll cut the cast off, rebreak if necessary, rearrange, and possibly do pins. He won't be able to go to school anyway. What a relief for them.

My friends have been wonderful. One called our names in to the temple roll, and another is searching for the school district's phone number. Meanwhile I'm fighitng to pre-register Niko at the hospital (they won't accept it online, I don't have a car to drive there, and they haven't answered their phone since noon today) and playing Sweet Child of Mine on Guitar Hero to entertain Niko. Wish us luck. Again.


camille said...

Oh my word, you have so much going on. I am so so sorry you are having to deal with this. I can't believe the school doesn't want to accomodate him. Why does everything have to be an uphill battle?
Thinking of you and hoping you can get some rest.

Julie said...

You poor thing. I have been in that situation where you are so tired and bogged down that if one more thing goes wrong you fall apart. I can't believe the school did that. Hang in there. Thinking of you.

Laura said...

Thinking of you.

Jeff and Jessie said...

a Stake President once said, "you parents whose children have been good, don't be so quick to pat yourselves of the back-obviously the Lord didn't trust you to care for his most valiant (and sometimes difficult) children." You are one of his choice daughter, Mercedes. And although it doesn't feel like it sometimes, the trials you face are evidence of your goodness. Thank you for being an inspiration and example to me.