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.

Open House

Aquatic Demonstration with Children -- Warm water is an effective treatment tool for children with neuromuscular problems. This demonstration will be with a 3-year-old child who walks on his toes and has subsequently become stiff in his legs and his trunk. You will see how this new kind of "play" in the water relaxes his muscles and allows him to have increased range of movement.

-- From Local Physical Therapy Open House Brochure

Going to Rehab

I scheduled Erik with a pediatric rehabilitation specialist in April. This appointment materialized after his private physical therapist reported his body was much more rigid these days and his pediatrician, although I have a lot of faith in her, doesn't seem to know jack about WS. However, Erik's pediatrician was more than happy to refer us. When the paperwork went through, an unusually pleasant woman named Audrey called the house to set up an appointment. We were not able to get in until April, but I explained to Audrey that since we are unable to see a WS specialist on a regular basis (we seem to be living in the wrong region for that kind of thing), I would like someone to give Erik's poor old body a once over just for his mother's sake. No hurry. It's hard to know what I am supposed to be doing with little to no guidance from medical professionals in this region, but I'm following my gut. It was my gut that led me to this diagnosis in the first place almost two years ago.

I already feel better.

News from the PT

I noticed that Erik is walking on his toes to the extreme now when he is free of his orthotics. Sometimes to the point where his bare toes curl under like a ballet dancer. His orthotics seem to have effected little to no benefit in the way of training him to walk correctly, although they do continue to keep his feet nicely flat when they are worn.

Today Erik's private physical therapist informed me there has been a definite change. Erik's body is stiff all over, likely because his long bones are growing faster than his soft tissues. This is not ominous news by any means, but I find it very scary at the same time, as I have seen older people with WS, including the humps, the slumps, and the strange muscular contractions. The little physical manifestations that make them appear like the elderly way before their time. Erik blew off the Williams growth charts months ago in the height category. Years ago. He has not gained weight in months but just seems to lengthen. Erik is plain tall, just like me, and yet is unlike his peers with the similar genetic deficiency. The deficiency that produced human beings that were perhaps once called "elves" or "pixies." All I can see ahead is more of the unknown in the form of a rapidly growing boy. How many WS parents have been told their child is tall, even by those who are unaware of this diagnosis? I can only do what is recommended and hope for the best, hoping the genes he has don't clash with the genes he lacks.

More stretching.

More slant board for the heels.

More protein.

More praying things will catch up in him.

I am fully aware that this condition makes any sort of typical change in his rigid little body a giant dip in this emotional roller coaster of mine. I'm trying not to worry. Easier said than done.

Grow, muscles, tendons, and ligaments. For God's sake, grow.

What the World Needs Now

Today was Bev's final home therapy visit. She left with tears in her eyes. When we said our goodbyes, I believe I hugged her longer than I have hugged anyone outside of my immediate family.

Last year Bev watched me burst into tears and run into the privacy of my bathroom the week we received our diagnosis. I had met her merely days before. At the time, I was in shock and could not make my mind wrap around what was happening to us. I had traveled to the children's hospital after seeing photos on line of babies that looked just like mine and knew in my heart my worst case scenario would soon unfold in front of me like a nightmare. Bev watched it happen with me. She brought a nurse to our house to provide counseling and answer my questions. I vaguely remember the nurse very matter-of-factly stating she had worked with another child with WS in the past and that Erik would be "just fine." Despite the fact she was probably a truly lovely person, I felt like punching her repeatedly in the face and watching her teeth skitter across the coffee table. Unfortunately, Bev was next on my list. After the nurse was only a distant memory, Bev remained assigned to help us in our home and at the early intervention facility over the coming weeks and months. She listened to my concerns and worked with Erik's slowly awakening body and mind for months. Looking back, she has been an essential component of Erik's team and is always genuinely amazed by the progress he has made each and every time she sees him. She has had the privilege of witnessing a relaxed, comedic side of Erik that he keeps hidden while he is at school, and she knows exactly how very special that is. She has been nothing but honest with me, and, as much as I hesitated to open my door and let her into my life at first, I consider her part of our family now. Forever. Today when I automatically suggested she attend Erik's 3rd birthday party in October, she readily accepted.

Watching them play together today was wonderful. She seemed to savor every last second with Erik, tickling him and making him chortle (my favorite laugh of his during which he smiles so hard the tiny points of his incisors show). She gave him a ride around the living room like a pack horse and "flew" him around in her arms, even though the increasing weight of him had the potential to generate horrendous back spasms.

Yes, Erik will be okay out there in the world, but from where I'm standing, it's very difficult to see sometimes. That is, it's hard for me to see until I watch someone he has touched hug him with tears in their eyes as they say goodbye. It's magic moments like these that remind me how incredibly special Erik is and how lucky I am to be his mother. I am on the adventure of a lifetime, and Erik is leading the way. It's scary and dark sometimes, but this is precisely the stuff that makes every painful second worth it.

Bev is retiring as the summer session comes to a close, so as she leaves Erik behind, she is quietly closing the door behind her.

For some very strange reason, the memory of this video from years ago came to me this afternoon. Watching it makes me smile. Today I am thinking that, yes, Erik's behavior may seem bizarre at times, but perhaps he is one person who can offer exactly what the world seems to be lacking big time these days. After all, he certainly has given me that very gift.

I'm so proud of you, Erik.

Keep it up, son.

Aches, Pains, Teeth, & Gains

Don't tell me how to live my life
Don't tell me how to pray
Don't tell me how to sing my song
Don't tell me what to say

Cuz I believe that miracles
happen every day
I don't care what you say,
I'm gonna do it my way

-- "My Way," Los Lonely Boys

I have to make this short, as my job has given me a moderate case of tendinitis, the likes of which I have not experienced since my days of shoveling pizzas in and out of an oven at my job in high school. I will purchase a brace today. I haven't had to wear one since I started transcribing 10 years ago. Hopefully, with TLC it will improve slowly. I hope so, as I have a short story in my head to write for another contest in San Francisco (Thanks, mom!).

The transition meeting went well. We chose Erik's preschool class and met the new members of Team Erik. I loved all of them immediately, of course. I sometimes feel like we do not have much support in town, but if I sit down and think about it, we have what we need. These folks are highly qualified and caring. They did the appropriate amount of oohing and ahing over Erik's photo and seemed to be curious about his syndrome, asking if there were videos, etc. One had even worked with someone with WS. I stalled a very long time chatting after the meeting because Brian left early to take Erik to the dentist, and I didn't want to witness that. The exam was reportedly very rough and made Erik cry very hard, but his teeth looked so good that no coat of lacquer was required. Glory be!

I spent an hour in the grocery store during Erik's pool therapy yesterday. As soon as I put him in the pool with Ms. G., he said, "Buh-bye, mom!" I was free to go. I bought a new oxygen-filled dish detergent and apple-scented candle for Erik's bathroom. I love my time in the grocery store. If loving Mr. Clean is wrong, I just don't wanna be right.

Lastly, Erik's language skills are sharpening. For instance, I was pouring some lemonade into a glass when he walked by this week, and he said, "Yellow water." Later he was in his chair threatening to tilt his glass over instead of drinking its contents as he enjoys doing. When I tried to take it away from him like I usually do, he glared at me and said, "Let go, please."

It was a hard week, but it was good.

Hippomovie

Words fail me today. All I can say is that I am so incredibly proud of my son.

Superstar!

I'm sorry to say that the majority of my photos of the party did not turn out very well. Disposable cameras are not what they used to be. The top photo is Rob, my neighbor, and Calvin, the gentleman who was kind enough to let us stay in his home (very brave!). The look on Calvin's face says it all. The second photo, of course, is of Lisa and yours truly.

Erik and I went to pool therapy this morning. After I got Erik settled with his therapist in the 94-degree water, I ran to the grocery store to purchase a few things I need to bake goodies for Easter at my parents' house and then enjoyed some quiet time in the waiting room. Erik's therapist is working with a fresh-faced, wide-eyed intern for the next six weeks. When the four of us walked down the hallway to the pool, Erik said, "Tubby!" The intern laughed and said, "Oh, HE'S the one who says tubby!" Erik has a real reputation there. When we walk in to this facility, the reaction we get reminds me a lot of the one Norm got on Cheers when he came through the door.

Erik shared the pool with another patient, whom I ran into briefly as I went to scoop Erik out of the water at the end of the session. When I asked how Erik did, this stranger immediately commented, "Oh, he's a star. We love him." I don't see many children at this facility. There are many middle-aged people with bad backs in excruciating pain and a foul humor, but Erik has yet to fail to fetch a smile from any of them.

I am becoming extremely efficient at packing for therapy away from home. I keep Erik's therapy bag (my old high school duffel bag) stocked with a tiny bottle of shampoo, froggie wash mitt with plastic bag to carry it in, fresh towels, swim diapers, books for the waiting room, regular diapers, snack foods, and warm clothing. Since the tiny shower area is not equipped for children, I have to make do and usually end up with a backache myself from hauling Erik around. I flip the shower seat down, plop Erik on his bottom, shower and shampoo him (if I remember, I start the shower before I get him out of the pool), get his diaper on without any place to lie him down, and struggle to get him dressed. The first few times I showered him, I came out in soaking wet clothing, but today I was completely dry. I think I am getting the hang of this.

Funny Erik Story: For some reason, Brian taught Erik how to say "Hello, Clarice" a la Dr. Hannibal Lecter from Silence of the Lambs. It all started when Erik started talking into the little hard hat that came with the big excavator Lisa R. gave him for his birthday. I suppose he did look and sound a little like Anthony Hopkins wearing that creepy prison mask in that movie. Now he just puts the yellow helmet on and says, "Hello, Clarissssse" over and over.

Poor Erik. He was destined to be weird from the very beginning in this family!

Tubby Wa Wa

Erik's pool therapy began this week. I packed my old high school duffel bag with a towel, swim diaper, soap, washcloth, and granola bar, and we headed to the PT facility. There was a athletic-looking man with silver hair dressed in expensive exercise attire in the waiting room. He stared at the two of us and smiled as I struggled to juggle Erik and everything I was carrying. Just as my bottom hit the chair, a therapist came and called his name. He closed his magazine, stood up, and began walking out of the room, but his trunk rotated progressively in order to keep his stare fixed on Erik. His arm reached out towards him as if he was going to say something, but he seemed to change his mind as he began to round the corner. He finally turned to follow his PT, and I caught an almost confused but definitely pleasant smile still fixed on his face. I smiled myself. Erik seems to touch everyone in a way I can't understand. This man seemed to be caught off guard.

Ms. G met us in the waiting room wearing a black swimming suit, wrapped in a fluffy towel that looked fresh from a dryer. We followed her bobbing ponytail down the hall into a small area designated for changing clothes. We picked one of the two sides of this tiny space that contained a shower stall and a folding metal chair. I pulled off Erik's clothes and dressed him in the ridiculous Lion King swim diaper I had purchased at Safeway the day before. I was told I could choose to run errands and leave Erik there, sit in the waiting room, or sit in another metal folding chair on the side of the pool. I opted for the poolside seat, at least this time. The pool was between 4 and 6 feet deep, depending on where you were standing in it. In the deeper half, a woman with bobbed white hair and a tattoo of a gecko on her shoulder followed the instructions of her therapist standing on the side of the pool next to me. Ms. G and Erik descended the small set of stairs into the very warm water. Erik seemed immediately relaxed. The stiffness in his muscles melted away, and his legs kicked gently in the water behind him as she held him. As they played with the impressive selection of ping-pong balls, milk jugs, plastic boats, and party beads, I scanned the room. There were plastic fish schooling in a shower of colorful glass raindrops hung from the ceiling in one corner. There was the usual mysterious assortment of life rings and hooks designed for plucking people in distress from the water like fritters from a deep fat fryer. There was a giant metal hanger on a pivoting mechanism I guessed was for transferring patients unable to move on their own. The heat of the room soaked into all of my pores, and my hairspray threatened to fail. I closed my eyes and imagined I was on a beach. After a brief vision of me losing consciousness in the relaxing steam and pitching forward into the pool like a scene from Weekend at Bernie's, I decided to keep my eyes open. Erik's limbs were moving more fluidly now. Ms. G stretched him and trailed his legs behind him as she moved. I felt something well in my heart as I watched my son's legs work gracefully. He looked completely normal to me for once. I bit my lip and went back to my daydreaming. The other client in the room crossed our half to exit the pool, and on her way she looked up at me and said, "I just have to say that your boy is so cute! He is just so friendly!" Again, I had missed any sort of interaction between Erik and this stranger. He had claimed another victim. I smiled again in wonder at this phenonenon as the door closed behind her. The session continued. Before I knew it, an hour had passed, and Erik was being slowly walked up the steps. When he reached the top, I caught him in the hooded towel I brought and walked him back out, where I sat him on the slats of a fold-down wooden bench and rinsed the chlorine off in his very first shower. I dressed him and managed to stay 90% dry. On the way out the door, I was asked to make a payment and sign forms while I attempted to keep Erik from plunging his hand into the water feature (too late), running back down the hall, or dumping over the wheelchair in the foyer to spin the wheels. I was back to being edgy, but I left knowing his session seemed to be relaxing for him and would help keep his joints and muscles loose.

Hippotherapy begins Friday the 9th.