Erik, Foxy, and Ms. G.

Of Course

You know you're old when the teenagers next door are having a rip-roaring party and you look at your husband and say, "How can they possibly have a decent conversation in that house with all of that racket?" Brian just walked up the lane to investigate. I told him to let them know I would either like them to turn the music up to a level where I can hear more than just bone-rattling bass or down to where I can't hear it at all. We were cool enough to wait until 10 o'clock to put in our request. I would go over and join them around their bonfire but fear some of the kids' litigation-happy parents or the fact I will look like the father who used to hang out with us in the dorms drinking beer and inevitably ended up sobbing, telling us that college would be the best years of our lives. Shudder.

I am a bit of a head case. I stood on the back porch today and screamed at the landscaping trucks from the business next door going light speed and sending up clouds of desert dust to drift through my open doors and windows. When they ignored me and my giant gestures, I only yelled louder, wishing I had taken a Spanish class instead of four years of French so I could curse accordingly.

Things have been going well this week. I have upped my workout regimen a notch and am feeling good. I am actually finally getting smaller with a major tweak in my diet and find myself fairly content emotionally with a new reserve of energy in the evenings. I was in the middle of my workout this morning when I realized Erik and I needed to be at the stables. After a light myocardial infarction, a quick shower, and a fresh coat of pink lipstick, we arrived just one minute late for our appointment. Erik insisted he would rather ride an ATV instead of Foxy-Horse, but he didn't have much of a choice today. As I pulled into the parking lot by the barn, I saw Ms. S, my "Earth Angel," and her little girl with Rett syndrome. Of course. God works in mysterious but less than subtle ways. We waved to each other, and I went to meet her inside the barn to chat. She informed me that the young woman helping lead Erik's horse today was actually the first cousin of Mary, the girl with WS that was mentioned in the editorial I recently posted. Of course. Apparently she saw WS in Erik's face the moment she saw him and asked questions about him. She thinks he looks just like Mary did when she was younger. As it turns out, Mary will be heading off to school back east in the fall. Ms. S informed me that Mary's mother knows about me and would like to speak with me, so I swallowed the lump in my throat and gave her my last name and phone number. Now I just wait for the call.

I'm very happy I am making connections here, and I have heard a lot about this woman lately that has alleviated my fears. I was reluctant to meet her at the beginning of this, but now I wonder if it's because she seems to be a lot like me. She is a shoot-straight-from-the-hip, tell-it-like-it-is sort of gal. Today was positive but still made me feel raw and vulnerable. That's not necessarily a bad thing, but I am glad that feeling is passing now that the sun has set. After all, it's a pretty intense way to feel for any extended period of time. My mother and I are headed to a fundraiser tomorrow for the little girl in town with 22Q13 syndrome. The party is exclusively for women, and flip-flops are mandatory to fit the "Flip Flops and Lemon Drops" theme. There will be a jazz trio, bartenders mixing up vodka lemon drops, five different fancy restaurants catering the event, mini-pedicures, and chair massages. I have to run to Macy's tomorrow to find some pretty but summer-casual attire, as I usually dress like a bit like an Amish woman, even during the summer.

Brian is now back from his mission next door. In a likely very half-hearted gesture of goodwill, I was apparently invited to drink beer around the bonfire with a small group of pubescent girls while 30 people do God-knows-what inside the house. I imagine that they would be more comfortable keeping an eye on at least one of us at all times so we don't ruin their little games. I noticed the scent of pungent but sweet smoke floating through my office window earlier, but that seems to have ceased now. At first, I told Brian that someone was burning garbage and voiced my concerns about the wind and dry grass. I finally identified the vaguely familiar scent and smacked my forehead with my palm. Of course.

Boy, I really am getting old.

Earth Angel

I had an amazing morning.

I have not yet worn my Sophie's Run T-shirt out and about. It's only because I am not that casual when I stop in to pick up work. In fact, I have never once worn any sort of T-shirt into the medical center. This morning something felt different. The dang thing wasn't even clean, but I threw it in the dryer to smooth out the wrinkles. I just HAD to wear it.

I soon found out why.

I drove Erik out to the stables this morning for therapy. A woman I never saw before was in the small observation room gathering her things to leave. I said hello as I led Erik through the door. She saw my shirt and asked, "Did you do Sophie's Run in Corvallis?" Surprised, I told her I had and began a conversation with her. She introduced herself and said she walked with Bev, Erik's therapist, every day at 6 a.m. Bev went to Corvallis to support us this year, so this lady knew about Erik and the race. I was happy to talk to someone who knew about the event on this side of mountain. Soon after we began talking, a beautiful, slim, long-legged 6-year-old girl walked slightly haltingly but purposefully through the door with Ms. G, Erik's private therapist. She wore a brightly striped sweater, jeans, and soft, colorful Nike shoes. Her hands gently but constantly tapped together, and she was noticeably silent. The woman introduced the girl to me as her adopted daughter, who was diagnosed at 3-1/2 with Rett syndrome.

There were many amazing things about this conversation. First of all, being completely caught off guard by this very sweet woman was a pleasant surprise. There is no way to say this without sounding psychotic, but we connected immediately, and I was excited about that. As we got into our conversation, we discussed feeling invisible at the playground or out in public, and how woman seem to be more cruel than men when they realize our children are different. We simply seem to fall off the radar at times to some people. I admitted I no longer go to the playground with Erik alone because of this. She told me how to get a caseworker here through the county to help me fight for Erik. We discussed how amazed we were by the typical 1-year-old boy whose mother works at the stables. I called him a "walking fetus," and she laughed. She understood exactly what I meant without me having to utter a word of explanation. We discussed how things could be worse, and how she unapologetically wished her daughter had Williams syndrome instead of Rett syndrome. Yes, someone envied my circumstances! If in the middle of feeling sorry for yourself you have someone tell you they wished they were in your shoes, it tends to change your perspective. She told me the story of how they adopted their children, and I was covered in a layer of goosebumps several times hearing the whole gorgeous story.

The most amazing thing of all was that she told me that she was related to the only other person in town with Williams syndrome. This would be the mythical girl I occasionally mention and have yet to see but hear about here and there. Can you believe it? Being in complete shock, I can't recall exactly how, but I believe she was her step-aunt, or something to that effect. Was today a friendly sign that it's time to cross paths with the other WS family in town? I don't know how I feel anymore, actually. After all, I know one of them now. I was originally dead set against it, but now I'm not so sure. I readily admitted my fears to her but told her I'm getting stronger; and I meant it.

We talked for what seemed like forever, but we both didn't want to stop. She told me she had every reason to believe Erik was going to be just fine. I told her I heard that once in the past, days after his diagnosis, and I couldn't make myself believe it for one second at that moment but that now I was almost certain it would be true. The plastic words that had wounded me like a dagger a year before were now soothing, especially coming from this woman, and I could accept them as the truth. She very gently but confidently reached out to pat my hand before she left and told me she was glad she said something to me. If I hadn't felt a little off balance, I would have hugged this stranger.

As I watched her go, I felt like laughing and crying at the very same time.

Back to Reality

I'm so thankful spring break is over. Erik had two weeks off school and his early intervention therapy home visits. I truly believe he missed it all. EI only comes to our house twice a month now. As he has grown, his needs have changed. Since I added hippotherapy and pool therapy, I cut his home visits in half. I have yet to contact the hospital about the music therapy there.

Brian took the day off yesterday and accompanied us to school. Erik seemed slightly thrown off by our return to the building and his classroom but seemed happy to be back. He did his usual peering into each office window as we made our way down the sidewalk along the front of the building, making sure he didn't forget to greet anyone. The shiny metal strip across the floor in the doorway that we previously conquered once again caused him to stop in his tracks and tentatively stretch one of his skinny, stiff legs to the other side to make sure there was not an unseen edge or dropoff there. Other than that, it was business as usual. He unzipped his coat using his new football zipper pull, to the amazement of the staff, and when I took his coat off halfway, he finished pulling it off. I felt a little guilty making him perform his new skills like a trained monkey, but I love to show him off!

Brian and I dropped Erik off and walked down the hallway to the library for parent group. Since we were the first to arrive, I chose my usual comfy rocker/ottoman combination. Brian sat beside me in a folding wooden chair, and we enjoyed our coffee together. Soon the room was packed with mothers and three infants and became the delightful, sweltering hotbox I have grown accustomed to. There was no set topic. We discussed Easter and how there was no longer an egg hunt for disabled children in town. We discussed the hotly debated autism-vaccination connection. We discussed the latest and greatest treatments for eczema, none of which seem to completely work for us. We discussed how parents with special needs children are sometimes cruelly mistreated and judged when they are in public with their families (appalling). Thankfully, Brian and I have not had anyone approach us with such sage advice or comments as, "You should spank your child. That would solve all of his problems" or the ever popular, "Why can't you control your child?" Even worse is the fact that some people feel like they have every right to blatantly stare without saying anything at all. It was unanimous that we would much rather have a stranger ask what is wrong with our child rather than say nothing at all and simply stare. Erik seems perfectly normal to me when he is sitting in a shopping cart, but Brian pointed out there are now times when Erik talks loudly in stores and makes it obvious something is different. That in itself doesn't seem to bother either of us, but I feel like I should at least try to be prepared for the first time someone says something rude to me so I don't "accidentally" (a) punch/mace/kick/slap anyone or, even worse, (b) burst into tears at the supermarket. I don't want to be blindsided, and those types of things usually happen when you are most vulnerable. However, people have been more than kind to us so far and seem to naturally fall in love with him.

Someone made a huge generalization about children with Down syndrome being "so lovable" and "happy all of the time," and I winced as I looked at the mother dealing with Down syndrome. These comments sounded slightly condescending to me, as if she were talking about fluffy puppies, not children. The other mother politely explained that her child has violent outbursts and bashes his head into the wall at times. I feel her pain, as people often view those with Williams syndrome as being happy 24-7 with no worries in the world. In reality, our children become just as frustrated, if not more, with things as any other child would. They are perfectly aware of the fact they are wrong when they are asked to solve simple puzzles or problems and are unable to make their brain see the answer. How frustrating would that be? Adolescence can be a desperately lonely time for someone with Williams or Down syndromes, and many have no close friends. Even in special ed parent group, there are misconceptions about each condition and syndrome from one parent to the next. I don't pretend to know much about Down syndrome, but I could definitely read this mother's body language and see she felt it was important she communicate that life at home was a genuine struggle at times. These kids are human beings like anyone else with complex emotions.

The typical babies in the room at parent group nursed, played, cried, and babbled during our session. They are all adorable. Brian and I marveled at how one tried to put one foot in front of the other when he was held upright at 6 months of age (something we did not see in our own child until much later). I chose not to hold a baby this time. The last time I did, I felt surprisingly emotionless about the brief experience, and my shirt smelled vaguely like fried food all day. Gross.

When it was time to leave, Brian and I went up to the classroom and found Erik in front of a little red plate that obviously once held chips and salsa. Bev reported that once he got into these particular chips, he ate with gusto. The boy is officially a salsa lover. It's perfectly natural, as I ate probably 45 gallons of it when I was pregnant with him (hot, of course).

So life goes on now. We have a financial planning meeting this evening, a home visit tomorrow, and hippotherapy on Friday. It's nice to have things back to normal again, and I am looking forward to a weekend at home.

Hippomovie

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

Hippotherapy

I am happy to report that I was reunited with my computer yesterday. I think it had a circuit board-eating bacteria or worms of some sort. The only freaking part left on it I recognize anymore is the CPU. All other parts, including the case it lives in, were completely replaced, and we are slowly getting to know each other again. I worked into the night yesterday and very early this morning to help my poor coworker/partner in crime get unburied from my absence all week. It's nice to be missed.

Yesterday Erik and I drove to the computer store bright and early after breakfast. I winced as I opened the door, but the technician had honored his promise to disconnect the buzzer on the door. After I paid an exorbitant ransom, I liberated my PC and headed home to feed Erik a quick snack before my friend Shaena arrived to head out with us to the hippotherapy facility. The farm is located a mere five minutes from our house, down a country road lined with glossy, white fences. The entrance was clearly marked with a beautiful sign, and we drove down a narrow asphalt lane to a giant, unassuming metal building snuggled up next to an unattractive modular trailer-type building with a wheelchair ramp to the door. We poked our heads into the trailer, where a boy I recognized from Erik's class was sitting on board swing suspended from the ceiling. Ms. G, Erik's therapist, was working with him. She instructed us to go through a door on the side of the metal building, where we found ourselves in a small room. There was a messy kitchenette with a sink choked with dirty coffee cups, a small table and chairs, and a wonderfully comfy, voluptuous love seat that looked weirdly out of place in front of a smudged window featuring a fantastic view of a gorgeous indoor riding arena and horse stalls constructed of blond pine. The earthy scent of horses permeated everything and made me want to sneeze. Shaena, Erik, and I explored the room and then made ourselves comfortable. Erik kissed a couple of the stuffed horses resting in a pile in the corner, smacking his lips enthusiastically. Staff members made their way through this room and out a door leading into the arena, smiling and greeting us as they passed.

Soon Ms. G joined us, leading us out onto a concrete walk lining the mucky-looking arena. We passed a couple office windows framing people hard at work at computers and on phones. Erik immediately formed a friendship with a resident dog, and as he gently touched this animal's fur, there was no tension visible in his body at all. No stiffness. No rocking back and forth. I smiled as I heard Erik say, "HI!" One of the many things I adore about Erik is the way he approaches animals and greets them like he would any fellow human as if he is the host of a talk show. His charisma, sadly, is completely lost on animals, but it makes me giggle every time. We were invited to watch Erik prepare to ride. He was fitted with a belt-like device around his torso and a small, white bicycle helmet, which he was less than thrilled about wearing but soon forgot about with some well-timed distraction. He mounted the horse from a metal platform and a tiny set of steps. After snapping some photos, Shaena and I turned to make our way back to the observation room, and it was at that moment I realized how much trust I have in Erik's "team." After days of worry and wondering how Erik would respond to the strange sights, sounds, and smells of this new place, it was easy to let all of it go and allow them to take over caring for Erik. Once we took our places on the love seat in the observation room, Shaena and I watched the staff work with Erik as he practiced throwing balls into trash cans from atop the horse and felt the large animal's movements beneath him. His normally stiff little body was relaxed and moved fluidly with the rhythm of the horse's movements from the very first second he was placed on it. Every time the team rounded the arena and passed the window, we would clap and wave at Erik as if we were at a very poorly-attended rodeo. He shot happy smiles right back at us.

After approximately 30 minutes of riding, Erik's legs were manually stretched out, and he was taken into the modular trailer for more therapy. When we went to check on him, Ms. G was playing an obnoxious, musical toy, singing along loudly, and holding Erik. Much to my surprise, he was doing fine, although it was painfully obvious to me he would much rather be playing with a quiet wheel. Ms. G is the first therapist I have observed working on Erik's issues with noise. While I think many loud noises are painful to him, there may be some that may simply create anxiety. I'm skeptical, but I have an open mind about gently exposing him to more noise -- just as long as it doesn't seem to hurt him physically or upset him beyond the point of consoling.

The three of us made our way back outside to the Jeep at the end of Erik's session and ended up taking a quick tour through the Taco Bell drive-through in town. I still can't tell you exactly why therapy in the morning makes me want a bean burrito, but it does.

Ah, the healing properties of fire sauce.

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.