Amazing Brace

Erik and I went to the orthopedic center for an appointment with Jeff, the orthotist, early this morning. Erik was casted a few days ago for his new orthotics, an event I neglected to write much about because the story would have been identical to the one I related about his first casting over a year ago. In a nutshell, though, Erik yelled heartbreaking things and sobbed, I held him down with a weird, tight smile on my face, and Jeff plastered his legs like a mummy. I noticed Jeff's hands shook a bit as he worked. I am sure that all three of us wished the whole thing was over, and it eventually was. There was much rejoicing. And a glass of wine for lunch.

Today Erik won his battle with anxiety about riding the elevator there after a lot of coaxing and then simply gently coercing him to enter the thing. If I ever happen to meet someone from the Otis Elevator Company, I will be sure to inquire why they bother with the pleasant chime that sounds when the car stops at each selected floor when it is preceded by some sort of obnoxious, raspberry-like buzz from hell between floors. Little things like this sometimes make public outings difficult for Erik. As a result of these little surprises, I lose the first layer of my skin on whatever body part Erik latches onto, and I then have to scrape us both off the ceiling. Today, though, Erik was a champion, and I kept the skin on my arm.

When we located the office and were ushered in by an alarmingly perky receptionist, Erik cried again upon seeing the examination room. I shrugged at her and smiled as she turned to leave and held Erik tightly on my lap, playing with some toys we borrowed from the waiting room and asking him questions about construction equipment. Jeff entered and said hello. Erik replied, "Hi, buddy." After our initial pleasantries, Jeff then proceeded to remove the orthotics from a layer of plastic wrapping. As he did this, I struggled to keep my mouth from very slowly but surely falling completely open.

I couldn't help but think there had been some sort of dreadful mistake.

I was told they would be less bulky, and I suppose they are if you consider the fact there are two fewer straps and one less buckle on them. The joints are gone, and the casings are completely rigid. His lower leg is actually unfettered in the front, free to leave the brace if he decides to bend his leg to attempt a stooping position, although I'm not sure how this will work inside the legs of his pants. His foot will always be flat, making it impossible for him to walk on his toes, and that's the whole point of these wretched appliances.

In My Head: Let's see. Come on, Nancy. Look at the bright side! They're uglier than sin, but think of something positive. Pull yourself together, girl!

Okay.

* They will hopefully continue to help him walk correctly and avoid costly, painful surgery in the future.

* They are clear.

* They will guard against rattlesnake bites.

Oh, God.

This is not what I had pictured in my mind at all. As I probably told you before, a stranger once looked down at Erik, saw his orthotics, and asked him if he was about to go skiing. We happened to be at church drinking coffee at the time. See, I was only hoping they would be less boot-like to avoid this kind of awkward social interaction. Instead of ski boots, they resemble some sort of space age equestrian garb to me. They will look even more bizarre than his old ones did when he will put shorts on this summer, as they will likely flap around as he stoops down to play.

Jeff warned that Erik will walk "weird" and to call him in the next few days to report how he is adjusting to them. To make matters worse, his $60 tennis shoes no longer fit over the gigantic plastic feet. The company I depended on in the past for his special shoes seems to be in transition and/or discontinuing the one style that works with his clothing. I plan on spending tomorrow morning at Payless Shoe Source attempting to rip the guts out of children's sneakers without being arrested. Worse yet, I could be hauled in for questioning under the Patriot Act and questioned about my relationship with a guy named Richard Reid.

Wish me luck.

Casting Call

This week we begin saying goodbye to the bilateral jointed AFOs (leg braces) Erik received on the weekend of his second birthday. I remember going to the store immediately after we received them and buying three tiny boxes containing cheap tennis shoes, hoping they would fit over the plastic that encased his foot. I had to tear the guts out of his shoes and throw them away, as there was no room for them to share with his feet inside. I remember how the ripping sound of the cheerfully-adorned Velcro on the AFOs caused him to recoil and begin sobbing. Putting them on and taking them off was torture to us all for a brief period of time, but they soon became part of Erik's daily routine and attire. Even part of his body. I soon learned while holding him on my lap to avoid allowing one of my digits to stray into the vacant space in the open joint above his heel when his foot was flexed in the event he unflexed, causing the plastic parts to suddenly snap shut like a clamshell, stamping a white, bloodless dent in one of my fingers while I screamed and tried to free my trapped phalange. The braces generated unwanted questions from adults and children alike that I never really learned to be comfortable answering.

It was all worth it.

He underwent a complete personality change that weekend, seemingly overnight. He learned to sprint with them on up and down beaches and climb stairs. When Erik was in his braces, I used to call him my Imperial Stormtrooper, and my folks and I occasionally hummed the Stormtrooper theme from Star Wars as he stomped around, because looking at the back of his plastic-encased legs completely reminded me of those costumes.

In the end, what seemed so traumatic and called unwanted attention to my baby back then quickly became something I grew to appreciate, as they stabilized him to explore the world and allow him to concentrate on developing his personality. They became virtually invisible to all of us. Photos of him wearing them still seem shocking, as their presence is somehow revealed to us through them.

Wednesday I take Erik back yet again to the orthotist, a visibly nervous but incredibly kind man with a dazzling, wide smile and a shockingly shiny head, the top of which my nose almost touches as I hold Erik on my lap and he leans over us to cast Erik. Casting was nothing short of a disaster for Erik in the past. The screaming saw that the orthotist used to bite through the plaster was deafening and terrifying to Erik. The jeans I wore the first time still have the invisible but raised lacy, waffle-like stamp of one of the wet leg casts that kicked against me as we held him down. When I wear these pants, I find myself running my fingers over my thigh as if I am stroking the contours of a scar from an ancient, deep wound that only I know is present.

Erik graduates from his jointed AFOs this week to slimmed-down ones that no longer encase his calves. I will wrap up the old ones and put them in the sturdy blue box to rest in the company of his baby blue pacifier, crayon love notes from his cousins, and the tattered leather moccasins that once protected his fragile toes which became bloody from crawling before he finally took his first steps.

Who knows? Maybe they'll end up in the Smithsonian one day.

Slice of Life

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though
It all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

-- "Halleujah" Leonard Cohen (sung by K.D. Lang)

Yesterday went fairly well, although I collapsed at the end of it and was in bed by 7:30 with a headache and apparent exhaustion, as I couldn't keep my eyes open anymore. Does anybody know who was voted off the Biggest Loser last night?

Erik attempted to refuse to go to school yesterday. He yelled, "No school! No backpack! No!" I gave up on brushing his teeth, and he stomped his feet, slammed doors, and followed me around hitting me as hard as he dared. I couldn't help but think this was like spending a morning with Helen Keller at the beginning of her education, except Erik did a much better job of locating me and cursing at me than she probably ever could. After a time out failed to work, I began ignoring him at the point where I thought I was going to snap and stuff him into Gracie's car carrier in order to transport him to school. I took a deep breath and turned on the Today Show. In the middle of his outburst, K.D. Lang began to sing one of the most beautiful songs I have ever heard, an older song by Leonard Cohen called "Hallelujah," and Erik stopped in his tracks. He stared at her performance and was frozen the entire song. He was in a complete trance. I stopped what I was doing and sat on the floor behind him, putting my hand on his back to let him know I was there. He very slowly backed up without breaking his gaze and lowered himself onto my lap. It was a little moment of peace in our house, and it was wonderful.

After school, Erik was dropped off in our snowy driveway, and we made complete dorks of ourselves waving wildly at Jeff, the bus driver. We ate lunch and headed to the orthopedic building at the hospital. I drove there a few minutes early to catch my neighbor Lisa working at her coffee cart in the lobby. She dropped everything she was doing and gave Erik a tour of the lobby, including the impressive but silly manmade stream that begins with a waterfall cascading over a collection of manufactured boulders and travels the length of the registration area in a long, rocklike enclosure. The scent of wet pocket change and struggling algae brought back memories of a fountain in a mall we used to visit in the valley when I was a child.

Erik refused to ride the elevator to the second floor, so the three of us went up the stairs and found the orthotics office. Three men emerged from the back workshop as we entered to make small talk, and Lisa introduced Erik to the ones that don't know us, beaming with pride. She marveled at the wall lined with various orthotics, most of which look as if they are for sports injuries. The bottom shelf housed a collection of braces identical to Erik's with foam pads and straps in cheerful colors.

Lisa left us to tend to her customers, and Erik carjacked a toy monster truck from the waiting room to take into the back room with Jeff, the orthotist. Erik has not been in this room for almost a year and a half but knew exactly what had occurred here with the screaming saw used to remove the materials they used to cast his legs. He began to panic, but we convinced him to join us, and I pulled the legs of his sweats up and took his shoes off so Jeff could see how tiny his braces have become. I'm no expert, I told him, but I do believe Erik has outgrown his orthotics.

If there was any doubt in Jeff's mind that I was telling the truth, one look at Erik's long legs capped with the tiny, toddler-sized orthotics took care of that. He called Erik's PT to see if he still needs them, and she told him she would reevaluate him at our next session. In the meantime, Jeff replaced the Velcro enclosures around Erik's legs so they no longer come undone every 30 seconds, and we were free to go. I made Erik ride the elevator but held him in my arms and soothed him through the rude mechanical buzzes and dings that made him jump and bury his face in my shoulder.

Status Report #2

The appointment with our new PT went well yesterday. Ms. G depantsed Erik and let him frolic in the therapy room with the various toys while she watched his legs work. She also evaluated his spine. All of the obnoxious, noisy toys were put to the side by the time we entered the room, which I found quite thoughtful, and although Erik was initially unsure about the squeaky horn on one toy car, she worked with him and he was honking it himself by the time we left.

We will begin therapy in the pool next Thursday. I'm a little concerned about how I am going to cram three PT sessions a week into my already maxed schedule, but I know it's best for Erik. We will alternate pool therapy and hippotherapy in one therapy session each week from now on, in addition to his early intervention program (EIP) therapies twice weekly. Erik will straddle a horse for the very first time in two weeks. Insurance will apparently not cover everything, but at this point I'd sell my own blood if I had to for this kid of ours. The facility we are using features a trampoline, goats, cats, dogs, and another therapy room with equipment. It's kind of like Joe Dirt meets Scrubs. Some of the children who have used this facility have eventually competed on horseback in various competitions against children who have no disabilities whatsoever. As Ms. G told us, "Everybody is the same on a horse."

Some of the muscles in Erik's ankles are atrophying from disuse in his orthotics. Ms. G told us it was time to let him go without them for a little while each day. If I had not gone outside of EIP, I would have not known this, so it is already paying off. I missed my little boy's feet so much and forgot how adorable they are. We will allow him to play without orthotics on at home, but he seems to need the extra stability when he is away, as he seems overwhelmed physically and mentally in those environments.

I am officially entering a new phase in all of this. It's a new feeling of isolation, and I'm halfway embracing it, as I know it's part of this natural but messed up process, and most of it will pass eventually. All of these phases I have experienced I have successfully plowed through, although they all visit me again from time to time for various lengths of time without warning. This particular feeling stems from living in a world that is generally not geared for or gives a lot of value to people who are different. Period. While it is time to look beyond myself and reach out to the world again, it turns out I don't like some of what I see at all. When I grew up, I felt just different enough that I didn't feel I truly fit in anywhere, although I pretended like I did, and a typical childhood was hard enough without living with a severe disability. I see a long, challenging road ahead for Erik. Frankly, being around typical kids is still a special form of torture to me. I feel lonely and isolated unless I'm in the middle of a special ed class anymore. It's ironic because that was the last place I wanted to be at the beginning of all of this!

On the other hand, though, I have been in contact with two new families here in the state with little boys like Erik, and I can already tell I will like them immensely. We will hopefully meet for the first time in April at Sophie's Run. At this particular event, I find it impossible to feel isolated or alone.

And that makes me smile.