On to Chapter Two

Last weekend was a relatively busy one for me and my family. We are usually a bit like hermits but were quite social. Friday night I went out with Shaena to dinner and drinks, which was a blast. Because we stayed out so late, I had a little trouble extracting myself from the comfort of our bed the next morning. A group of old friends, some of whom were visiting from Colorado, gathered Saturday, and we enjoyed a barbecue together.

I had my moments of despair this weekend. Unfortunately, watching the other kids play while Erik quietly clings to us is still quite difficult for me. I remind myself how completely uncool it is to feel sorry for myself, but somehow that doesn't really alleviate the pain that blooms in my chest at those moments. I suppose it is worse because my two girlfriends had their boys at almost the same time as I had mine. Watching the boys play together while Erik sits with us will never be easy, and I already feel like we are being left behind. We attended yet another barbecue on Sunday night. Between the two events, Erik spent exactly zero time with the other children. Once he relaxed, he cuddled up on a stranger's lap to doze off or retreated to where he could spin the wheels on a toy race car. Other children would occasionally come by and try to steal the toy he played with on their way by, but Erik looked blankly at them while their parents stopped the crime in progress, and he was left alone again.

I have to say how much I appreciate the way my friends and the adults who don't know us interact with Erik. He was treated so well by those he climbed on or talked to death (using three words in various combinations). I was reminded by one man that Erik was much more chatty than he was a couple months ago. When one woman asked me if I was looking at preschools for Erik, I chose my words carefully, but they were surprisingly easy to offer to a stranger. I came to the conclusion that "special education" was the correct term to use in this situation, as most people have no idea what "early intervention" is, and Erik is technically out of that program now, anyway. Our facility here is quite well known, and I wanted to give it the credit it deserves while expressing my excitement about Erik attending school there. Instead of going into a long explanation of what Erik has, I discovered it's quite easy to select a couple symptoms from the constellation of those that comprise his syndrome when appropriate or necessary. It is now officially no longer possible to hide the fact that Erik is different in this setting, and I'm exhausted from pretending my double life in therapy and early intervention parent group doesn't exist. The hostess of our second barbecue was very thankful I informed her of Erik's sensitive hearing and difficulty with the noises blenders make, as she was mixing margaritas. I said just enough to get us by, and he was cuddled and cooed over. The other children were scarce and only came across the yard to ask for something to eat or drink occasionally before disappearing again, so Erik stole the entire show.

The best part is that Erik was able to ride the motorcycle Saturday and his beloved all-terrain vehicle on Sunday. The men of our group always gladly oblige his obsession after politely looking to me, his old, stick-in-the-mud mother, for approval. Erik was in heaven. Ironically, the sound of margaritas spinning in a blender sends him into fits, but the farty, trillion-decibel roar of any sort of vehicle is a giant thrill for him.

Our last day of early intervention (summer session) was yesterday. Besides an unexpected visit from the largest spider I have seen outside of captivity (I made certain I was not atop a tuffet), parent group went without a hitch and ended without fanfare. I scored the name and number of another special needs mother who happens to give facials and wax eyebrows in preparation for Erik's first days of day care and preschool. We collected Erik's things, including pasta art, paintings, and end-of-the-year gift bag, from the classroom and made a quiet exit.

Sisters

I received this from a friend in town who has a daughter with fairly extensive special needs. I am unable to determine who originally wrote it. Although I do not personally subscribe to the belief that mothers like me are hand-picked/chosen by God to care for children with special needs, I found this a comforting reminder that there are still others in this boat with me.

Enjoy.

(Update: Author Maureen K. Higgins)

Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience…experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist' s offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we sisters keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

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.

New Greeting

Check out Erik singing his ABCs on the Gabcast feature on the sidebar.

Greetings and Salutations

I reached into the back seat of my Jeep, unfastened the twisting straps on the car seat, and encircled Erik's rib cage as best I could with my outstretched hands, extracting him from inside the vehicle. I pulled the generous length of him out into the bright sun, my back reminding me that doing anything wrenched at this angle was likely a chiropractor's wet dream. Erik immediately dropped to the surface of the parking lot like a damp rag and began to retreat into that strange, autism-flavored world of his, running his fingertips over the surface of the sunbaked asphalt while I tried to coax him into standing up and looped my purse over my forearm at the same time. He ignored me and went about his business. I pulled him up by a stiffening arm, but he easily yanked his hand free from mine. His hands seem to be amazingly boneless at these times. I sighed and made another attempt. I was able to hold onto him long enough to drag him across the parking lot to the shopping cart return. His distracted gait was unsteady and he fell more than usual, but we made it in record time. Curious, I read the print on the flip-down child seat on our cart and saw that it was designed to hold children up to 24 months or 35 pounds at the most, although this was discouraged. I crammed Erik's plastic orthotics through the cart's metal skeleton and pulled his long legs through. He will never make it to 35 pounds in this, I thought. Not if he grows like this. I know that our trips to the store together are numbered now--at least until he is old enough and able/willing to follow my instructions so he doesn't go home with someone or get hurt trying to access the wheels of another shopping cart. The fear of being trapped at home hasn't completely faded. It's still a knot in my stomach, leftover from Erik's dark days of infancy. I took a deep breath and reminded myself we would adapt and wouldn't be trapped anywhere ever again.

The grocery store was dark and cool. We began cruising the glossy aisles, filling the cart with items from a list written on a sheet of notebook paper with year-old notes from the children's hospital on the opposite side in my block print with an uncharacteristic, worried slant. It was the only piece of paper in range when I made the list, and I planned on crumpling it into a small ball when I was through with it or letting it languish and fall to pieces in my purse. I suppose at the time I chose this particular piece of paper to write on, it was without much thought at all, but now I considered it a symbol of the past I planned to destroy. I certainly don't need it anymore. As I shopped, Erik shot off greetings as if he was firing a weapon.

Hi! Hi! Hi! Hi! Hi! Hi! Hello! Hi! Hi! Hi!

Most of his words efficiently found their intended targets in the relatively quiet store, most of whom seemed a little surprised and uttered, "Oh! Hello!" I imagined them falling to the floor and screaming, "I'm hit!" When there was nobody in sight, his long neck craned so he could see the aisle behind him. When there was nobody there, he would say hello, anyway. I searched the cold shelves for a variety of cheeses and was asked by a gentleman working there if I needed help. As we launched into a gripping discussion concerning Swiss cheese and lower-fat dairy products, Erik repeatedly greeted the man, who smiled and occasionally very patiently greeted him back as he answered my questions. I stood there for an uncomfortable length of time searching for few items for my weekly menu and then exited the aisle. Two aisles later, I realized I needed lunch meat and that it was located exactly where that same man was working. When we arrived yet again, Erik greeted him 12 more times. I grabbed the item I needed and continued down the length of the store to the baking aisle. Three children ran past our cart, and Erik was visibly quite happy to see them, sitting even taller where he was perched. As I wandered a few yards down to find Italian bread crumbs, I heard a child say to his mother, "Mommy, that little boy only says hi!" followed by the laughter of this kid's siblings. By the time we made it to the produce section, the last section of the store, my brain was cluttered with the voices again, and I wanted them to stop. Most of the people shopping around us had been an aisle or two behind us and were quite familiar with Erik's voice by now. A woman in crisp office attire asked an employee about fresh coriander, and Erik yelled "Hi!" She tried to ignore him, but he kept it up. A few other shoppers turned to see what was going on and then looked back down at the fruits and vegetables with amused half smiles on their faces. Finally, she turned to him and said, "Well, hello there." A man stood by the salads and almost aggressively smiled at me, but I was receiving a slightly pervy vibe from him and largely ignored the weight of his presence while I hastily tossed lemons and bundles of romaine lettuce into the cart as if I was Michael Jordan trying to make a 12-footer at the final buzzer. Finally, Mr. Aggressive saw his opportunity and said, "Boy, he's really testing those social skills!" I felt myself losing my final grip on my sanity and smiled a dry smile before making my way back to the checkout. As we turned the corner, Erik shouted a final greeting, and I heard more than one person laugh. As the checker rang up my mountain of groceries, the bagger, obviously deep in discussion with my charming boy, looked up and me and commented that Erik probably likes to go shopping so he can pick out his own things. I said, "Yeah, I can't WAIT for him to do that!" and laughed, receiving a quizzical look from the man and realizing Erik looks more than old enough to do that now.

Exhausted from battling the mama bear overprotectiveness that kicked in each time Erik engaged strangers and drew some of them in around us, I wondered if I will ever be comfortable with Erik inviting the people of the world into my own private one. It's hard for me to relax now, as I am so busy scrutinizing these unfamiliar, new reactions to Erik coming from strangers. I declined an offer of help to my vehicle and pushed us back out into the sunshine and the wonderfully wide-open parking lot where I could breathe again.

Erik squinted in the sunshine and smiled at people in the distance, far out of earshot.

He said hello anyway.

Tomorrow

An Afternoon at the Mew-See-Um

Erik easily tames a wild beaver.



Andy, Sammy, Erik, and Brian.



I finally have a recent photo of the three of us together.

Coping Mechanisms

Things I have done since yesterday --

1. Weighed myself and realized I have lost 21.6 pounds in two months. Hoo-RAH.

2. Gone out for beers and a gooey, cheesy bean burrito at a favorite restaurant with old friends who get me.

3. Taken a long jacuzzi bath with tangerine-scented bath salts by candlelight.

4. Accepted an invitation to go on a family outing today at the local museum with old friends.

5. Watched my son approach me this morning and say, "How are you doing?" clear as day.

It's another day. I still don't feel quite right, but I'm happy there are things to enjoy today.

This is a video I watch when I'm blue. It's from the television show Scrubs. Just try not to smile.

God's Hands

It's almost two o'clock in the afternoon, and I haven't started work yet.

I just broke down in front of my mother for the first time in months. The presence of WS and what it means has permeated everything, and there is just no escape from it today. It just catches up with me from time to time. Thankfully, I am getting quite good at ignoring the dead weight of it on me and am quite capable of going through the motions that my life requires in all of the roles I must fill. Through each month that has ticked by since the birth of our son, I never failed to put on lipstick. I even manage to enjoy moments of joy on an almost daily basis. If you chipped away at my smile like an old painting, though, you would be able to see the next grim, dark layer of grief that will never wash off, flake, or peel. It is a layer of badness that no amount of optimism or ignorance will erase, and I have learned to live with it without flinching most of the time. After all, there is not much a little lipstick can't at least temporarily cover. Then there are days like today. These days are few and far between, but they still bring me to my knees.

I watched the Good Morning America segment yesterday. If you peered through my living room window at that moment, you would have seen me sitting on the couch clutching my cup of coffee, still wet from the shower and seemingly ready to face the world. Diane Sawyer is one of my heroes, and hearing the two words that have altered my life forever coming from her perfect lips so casually at that time of the morning made me feel like I was dreaming. I sat to watch and listen to this highly-anticipated segment and found it interesting, although I felt the average person may conclude like I did that Diane's questions were not satisfactorily answered by the pleasant but slightly bored-appearing Dr. Reiss and merely produced more questions. The segment mentioned living with the "joy gene," which I found a little strange, as my child is lacking genes and doesn't have anything extra.

Ben, the 21-year-old featured in the segment, is also one of my heroes. I am quite familiar with his face, as it appears on the cover of my WS manual and in the 60 Minutes video I have at home. It it my hope I will be able to meet him next year. Watching him grow up in the media has been fascinating. The closeup of his hand in the segment really bothered me, as it is still very difficult for me to look at the hands of those with this syndrome. I shook the hand of the woman with WS at Sophie's Run, and I will never forget how it felt in my own hand. They seem clumsy and frail at the same time. They appear to me to belong on old people. It probably sounds strange, but I am afraid of watching my son's large, gentle "syndrome" hands age. I can see the features of the syndrome seeping into his face as he grows, as can the people who work with him, and I find this experience devastating at times.

The emotional hangover from watching this piece took some hours to kick in, but it did, no matter how valiantly I fought it. As I tossed and turned in bed for what seemed like hours, I wished I could escape my own brain, which began to tease me in that foggy state between consciousness and sleep. I heard voices telling me that I was crazy for not wanting to have a "normal" child. I heard my own voice stating that having a normal child wouldn't erase the strange affliction that plagues my son's body and mind. I heard myself say how much I loved the child I had already, how I was pouring my heart into raising him, and how I was so very tired and thought I deserved a rest. I heard another voice telling me I sucked at having babies anyway. If another child didn't die, there would be something horribly wrong with them. I then heard my voice again, screaming -- loud, angry jumbles of words telling the world to get off my back. I felt one single tear trying to filter through my eyelashes. I opened my eyes, amazed there weren't more behind it. But there weren't. I stared at the ceiling for a while and then closed my eyes. The voices continued. They droned on for another hour like I was sitting at a cocktail party in hell.

Stop!

God help me. Please.

Now I lay me down to sleep,
I pray the Lord my soul to keep.
If I should die before I wake,
I pray the Lord my soul to take.

The voices faded into the darkness until I heard only my own, telling a story.

When Erik was little, I remember him crying for hours on end. I used to run one of my fingers down his stick-skinny arm covered in loose skin and smiled at how large his hands were. I thought to myself this was a sure sign that my son would be strong and masculine. I was oblivious of the fact a chromosomal abnormality had distorted his body ever so slightly in this way. I told myself during those desperate hours that his crying would cease eventually, and he would become a man someday. I pictured his tiny arm grown and casually resting on the sunny windowsill of a pickup truck as he took someone he loved on a drive.

I was certain that he would care for someone with those hands. I just knew he would protect someone with those hands. He would someday hold his own babies with those hands. I just had to hang in there and get him through the colic.

Now I know the truth.

I know his hands will always be clumsy. I no longer dream about him protecting anyone but himself. I know his own brain will play tricks on him, making everyday tasks feel seemingly impossible. I no longer dream of him becoming a doctor or a teacher. I simply dream of him learning to train those wonderful, clumsy hands to tie his own shoes someday. I would be so incredibly happy if he could do that. How can a mother's heart NOT break when she sees someone with the same syndrome her child has struggle to put a piece of paper in an envelope? To hear that this man never had a best friend? How can my son be wired to desperately hunger for social connections and lack the ability to make them? Is this some kind of sick joke? What kind of future can this planet offer my child?

I dream of him finding just one friend who won't leave him behind as they grow. I dream of him not having to grow old alone. I simply dream of his body allowing him the opportunity to grow old at all.

Stop. That's enough.

I padded to the bathroom and dug through my drawer to locate a blister pack of sleeping tablets. I poked one through the foil, broke it in half, and swallowed the chalky medicine, chasing it with a swallow of lukewarm water I collected from the tap.

Stop.

WS in the News

On Thursday, July 19th 8 a.m., Good Morning America will feature an interview with Dr. Allen Reiss. They will be showing still pictures from the WS music camp during the interview.

A Lengthy Weekend Report

Saturday we loaded in the car to go on a family shopping trip. Brian and I rarely leave the house together, as we have busy jobs at different hours of the day and end up lounging at home more often than we go out and about as a family. We headed to the home improvement store and explored the glossy, wide aisles of the fencing section. Our house sits on five open acres of dirt and sage, and we need to corral Erik and create a space we can enjoy outside without constantly chasing after him, fearing he will run into the busy road. After putting my stamp of approval on Brian's choice of fencing materials, we went to the sporting goods store, as we were both in need of new athletic shoes. Brian and I tried on shoes while Erik stuck his head between the shelves. He worked his body in so far that just his plastic orthotics were stiffly jutting out from the dark space, generating some strange looks from shoppers passing by. He was a complete handful in the store, lying down on the cement floor, fighting to get to the wheels on other shoppers' carts, sobbing when we told him no, and being a general pill. When I tried to detach him from underneath a random shopping cart, he went limp and refused to stand up, falling into a dense pile on the floor. When I stooped down to his level and tried to talk to him, he laughed and then cried. Communicating with him is so damned difficult sometimes. He's too heavy to scoop up and tote around for more than a minute anymore, so I end up dragging him as he refuses to move, falls all over himself, and looks up at the ceiling or protests. Once he understands I'm unhappy, his sensitivity sometimes kicks in, and he cries. He's a typical 2-year-old in many ways, but WS sometimes is a very thick wall through which I can't seem to reach him. I certainly am unable to explain consequences to him like my friend is able to with her typical son his age, although I try. He simply doesn't understand the concept. I imagine this will get much better with time, but at that moment I felt like going home and sobbing. Brian and I both found ourselves frustrated and exhausted. We cut our trip short and went home to escape the heat. On the way out, the checker fell in love with Erik. She was a young, slightly snotty thing who likely would not normally give me the time of day. She stared at him for much longer than socially acceptable and finally asked me his name. He called her "love bug" as we gathered our purchases and turned to leave.

Fighting more pain blooming in my eye socket from the heat, I came home and napped briefly on the couch while Erik played in his room and refused to sleep. Brian cleaned out the garage. The other WS family with a son Erik's age made it to town and called later in the afternoon. Earlier in the week she left a message on the answering machine concerned about certain local restaurants being too noisy for Erik. I laughed out loud at this because it was so sweet and refreshing someone would think of this and then mention it so casually. I LOVE being around other WS parents. We agreed to meet at a local brewery with family dining. Living in a tourist/resort town has its advantages. Although we rarely go out to enjoy what is here, there are a multitude of restaurants and fabulous little shops to enjoy if I'm ever in the mood to explore them or want to take a guest out. This particular eatery is a very woody, lodge-style building in the pines that covers 6000 square feet and has a casual feel to it with big screen televisions and patio seating. Tina, Marco, and Brandon were already inside when we arrived, and we made ourselves comfortable at their table. Brandon was busy with crayons and paper. Although he seemed much more skilled at using the crayons than Erik is, he was more interested in waving the paper around and occasionally using the crayons as projectiles. He was noticeably much more expressive and animated than Erik and readily offered beautiful, bright smiles. Erik sat stiffly by Tina, who was wonderful with him, making sure he didn't fall out of booth and feeding him Marco's french fries. To me, Brandon seemed more "typical" than Erik did in his behavior. However, Tina told me she was impressed with Erik's verbal skills and crisp enunciation of words. Although Brandon seems to express himself quite well, he does not use words like Erik does. I suspect he doesn't need to at this point and that if he played with Erik more often he would either get completely talked to death or begin talking more himself. Although the have the same syndrome, they are definitely completely different children with their own strengths and quirks. Brandon is not plagued by sensitive hearing and seems much less rattled by the outside world than our son does. In this way, Erik seems more severe to me. Physically, Erik is much larger with his version of my lanky, slightly clumsy limbs. They seemed to enjoy each other's company, although their interaction was minimal. Tina and I compared the boys out loud and asked questions without apology, and it was quite comfortable. While other mothers seem to silently compare their typical children at the playground, I have found that when I'm around WS mothers, we are much more open about comparing our kids, as this activity is not meant to be competitive but serves as a way to determine where we stand developmentally and even what there is to look forward to. Since the opportunity doesn't present itself on a daily basis to be around other children with this syndrome, we seem to enthusiastically take advantage of it. Being with these parents makes the daily struggles we face alone much of the time completely normal, and I need that. It's something that it difficult to explain here, but there is nothing quite like it. Of course, I fell completely in love with Brandon. He is completely adorable. We had a very short visit, and I left wanting much more time with them. I'm hoping we can meet here and there so I get to know them better.

Yesterday Erik and I went to school. Erik enjoyed class, and I was one of two mothers in parent group. Before the other mother arrived, the moderator told me I was such a great mother and she just couldn't understand why I wouldn't want to have another baby in order to have a "normal" child. Thankfully, the other woman came in and sat in the chair to my left, cutting my bewildered answer short. It's a horribly painful subject for me, and I deeply resent always feeling like I have to defend myself.

After class I drove Erik over to a house north of town in a new, well-to-do neighborhood to check out a daycare provider. We have decided to place Erik in private daycare one full day a week. After a quick tour around the first floor of this home and meeting the other children who would be playing with Erik, I gave his new provider one of the WS cards in my wallet and explained that she would have no trouble taking care of him but made her aware of his sensitivity to noise and the fact he is very delayed compared to the other children in her care. I told her I would leave his orthotics off the day she has him so she wouldn't have to deal with them. Erik found a collection of toy tractors and trucks and made himself at home immediately with one in the corner of the dining room away from the other children, although he initially greeted them with hellos and smiles. When I retrieved him so we could leave, said our goodbyes, and began walking back down the driveway, I felt a little sick to my stomach. Everything seemed perfect, but I rarely am away from Erik for more than four hours at a time. What will I do with an extra four hours? I reminded myself that this would be incredibly good for Erik and looked down at my toes.

I suppose this means more pedicures for me.

Wherever You Will Go

My favorite song at the moment. The photos are a little bit of old and a lot of new.

Connections and Growth

Big news! We are looking forward to spending time this weekend with another WS family from the valley. Brandon is almost precisely the same age as Erik (they are merely two weeks apart). I spoke to Tina, Brandon's mother, on the phone once and met her at Sophie's Run this year but have a lot of catching up/getting to know her family to do. Seeing Erik and Brandon together is a gigantic deal for me, as Brandon is the first and only boy with WS I have ever met. As much I as try not to immerse myself in this diagnosis 24 hours a day, it affects a lot of what we do and what occurs in this home, so sitting next to another parent in the same boat makes things feel so...well, normal!

Bev arrived today for her second to last home visit with Erik. We are then forever finished with home visits through early intervention. She is transitioning into retirement at the end of the summer and apologized for being unavailable since the end of May. She has not been out to the house since then, although we have seen her at school. Needless to say, she was completely blown away by Erik's progress in the last couple of months. He showcased his wonderful sense of humor and even attempted to sing some songs. He happily cuddled and wrestled with her. He very generously offered her kisses from his favorite stuffed animal, Stinky Dog, whom I fear is actually beginning to decompose despite repeated washings. She grimaced and politely declined. He simply poured on the charm. She brought a toy shaped like a plastic microphone that you can speak into and hear your voice reverberate. Erik sang into it and did a series of very lengthy, random monologues on various topics, much to our delight.

As she gathered her toys and greeted my parents, who came to pick Erik up so I could work, she honestly seemed a little sad. She then said something that made my heart swell with a thousand emotions at once.

"Erik doesn't need me anymore."

It's finally happening.

I never thought I would see the day when the severely delayed, sluggishly passive infant I wheeled into her facility would actually thrive.

He's growing up.

Dry Heat

Random Thought of the Day: Yeah, I think Oregon is on fire.

It's a surprisingly cool morning, although we are headed for almost triple-digit temperatures. Although the grass on our property is still bone dry, I can smell a hint of the scent of rain in the air. The sky is covered with a thin, gray cataract of smoke and fog.

I have done quite poorly in this heat. I have been trudging around with an intermittent, sometimes debilitating headache for four entire days. Yesterday I took a pain pill and found a spot on the couch with Erik in front of Sesame Street. I felt like a complete crack house mother, but I had no choice. I asked Erik to bring me the blanket on the other couch. He looked at it, laughed, and walked away. Eventually I was able to convince him to fetch it for me. I fell into a drug-induced slumber to the shrill, ear-piercing voice of Elmo for a good five to 10 minutes and felt slightly better when I woke up. I don't have the luxury of calling in sick to my job. The only time I ever left my partner hanging was when Erik brought home a lively batch of Rotavirus and I was on the bathroom floor calling Ralph on the big, white telephone for two or three days. In any event, I am able to go through the motions of my routine and am waiting for this to pass so I can be me again.

Erik attended his first session of summer school Monday. He seemed to be happy to be back at school. I made myself comfortable in my rocking chair and looked longingly at the empty coffee maker but soon realized I was the only one at parent group. I leafed through an old copy of Reader's Digest, ignoring the serious texts and manuals looming over me on the bookshelf that used to haunt me, and read about Jamie Lee Curtis instead. Finally, the parent group leader came to join me and even made me some campfire-style black coffee, and we talked about our summers. One of my favorite mothers, the one whose fundraiser I recently attended, found us and joined us for a while. We talked about a new law that has just been passed here that grants medical cards for children with less serious medical expenses than the medically fragile. Although I miss the other mothers, it was nice just having the room to ourselves for once without the hard luck stories that sometimes stick in my heart for a couple of days.

Bev, Erik's therapist, poked her head in the door, eyes wide, and announced to me, "Erik DOES NOT forget a face." She explained that as soon as she walked into the classroom, Erik said casually, "Hi, Bev," even though it has been weeks since they have seen each other. As my son is generally unable/unwilling to follow many simple instructions and is very quiet in class, when he easily greets people by name, it really blows many adults away. Even Bev. I smiled as she pulled her head back out of the doorway and went back up to the classroom, shaking her head in amazement.

After class as I was walking to the parking lot, another mother from last session called out my name, and I turned to talk to her. She voiced her disappointment because her son had been talking nonstop about Erik and we were not in the same class this session. It is definitely nice to be missed.

Erik continues to grow and give us a glimpse into his future with Williams. His anxiety, although it has always been apparent in his shaking little body, is taking a new turn. For the past two nights, I have heard him screaming as if he is in complete agony. I have hurdled the coffee table and sprinted through his door to find him sobbing, muttering, "Siren!" over and over. I wrapped my arms tightly around him and listened. Sure enough, there was the faint wail of a siren in the evening air, almost inaudible and likely miles away from here, the sound of which had drifted through his bedroom window. Why this is suddenly upsetting to him is a complete mystery to me. I can't really criticize the boy, as I was deathly afraid of inanimate objects as a child, including the American flag and broken windows. All of my shushing and soothing words have little effect on him when he is this worked up. I found a CD of classical music in his ever-growing music collection and put it on his stereo, which began to calm him down. I then snuggled in bed with him and practiced my sad ventriloquism skills on the slobbery stuffed animal I call "Stinky Dog." That actually elicited a hearty laugh from him.

Life goes on here, and it is good.

Hard sometimes, but good.

Another First

This weekend I heard Erik say, "I love you, mom."

Clear as a bell.

The Gregarious Brain

"They know no strangers but can claim few friends."

-- On people with WS from the article "The Gregarious Brain"

The article the WS world has been buzzing about made its debut on line today. As heartbreaking as this subject is to me, the article is beautifully written. If my child didn't have WS, I would be fascinated by this "genetic accident" from a scientific/curiosity standpoint. It's a truly bizarre syndrome. You can find the article in The New York Times tomorrow, but it is now available to read on line here.

There is also a video of Nicki, a 19-year-old girl with WS. Many of you have never seen someone with WS "in the flesh." In listening to her, the innocence that accompanies this syndrome is quite apparent to me. There are truly devastating cognitive disabilities that accompany WS, but they are often masked by near-normal language skills. If you don't have time to read the entire article, the video is worth watching. You can see it here.

People have told me since our diagnosis that I will someday be thankful our son is wired the way he is and wouldn't want him any other way. I do love Erik just the way he is. Does my heart break when I look at him struggling? Yes, and the pain is almost unbearable at times. There are days I seriously don't think I can stand one more second of this! I would never wish this upon any child or their family, and I still wish things were different. It's hard being thankful my life is so incredibly full because of Erik but at the same time cursing our circumstances, knowing the road ahead of our family is the most difficult one we will likely travel, especially for my sweet, innocent boy with a tender, vulnerable heart. One thing is going for us, though. The world is beginning to sit up and take notice of this group of individuals with some of the purest hearts on the planet.

I believe wholeheartedly there are angels in our midst.

Face Behind the Blog

Rosemarie tagged me to participate in The Face Behind the Blog meme. Basically, the instructions are to create a series of photos to show yourself in a light people don't normally see. Since I talk incessantly about being a mother, I thought I would go another direction today. If you would like to participate, consider yourself tagged.

I'm not that great at determining kids' ages, even looking back at photos of myself. I couldn't tell you exactly what year this was, but I'm guessing I was about 6 or 7 here, making it 1976 or 1977. The one thing that is clear from this photo is that I'm not quite old enough to keep track of my both of my mittens, as my mother has tied them together with that variegated rainbow yarn that was once all the rage. In theory, the string was supposed to run through each sleeve and behind my back inside my jacket, making the yarn invisible and keeping my mittens on my person at all times, but in this photo I seem to have found myself in a bit of a snag.



This must be from about 1984 or so, judging from the George Jetson-style remoteless television with VHF and UHF knobs and the VHS tapes in the background. I was probably 13 or 14. I see there are streamers hanging from the ceiling in this photo, so I was likely decorating for one of my last sleepover party extravaganzas with childhood friends. You know the stuff -- truth or dare, pillow fights, and stuffing yourself with junk food. If we got really wild, the Ouija board would come out until we were thoroughly freaked out and couldn't sleep. We never did contact any dead celebrities but did hear from a few angry, dead D-listers. Thankfully, this was the last year I was built like my little brother.



This was taken the summer after my senior year, right before I packed my things and moved into the dorms at University of Oregon. I was still 17. I believe the necklace I'm wearing is my honor society key (Nerds!). I am showcasing my very first refrigerator of my own as if I'm on a very sarcastic version of the Price is Right. It produced ice the size of sugar cubes that melted in seconds. However, I read somewhere recently that the U of O dorms were recently voted the worst college dorms in America, and there is no doubt in my mind that I could have left the trays on my desk in the winter and manufactured the same ice cubes in a mere 10 minutes without any electricity at all.



This is a 1990 photo of a clinically depressed girl with VERY big hair. My braces are still affixed to my teeth, but in this photo I forgot about them and flashed a fake smile (my lips are tightly closed on the previous photo). The girls with me are from my dorm. I used Aqua Net on my hair at this time. On one occasion around this time I was on my way to breakfast in the cafeteria when a boy from the next dorm asked if I had been drinking. Sadly, he had merely caught the scent of the isopropyl alcohol in my hairspray. It's a good thing my friends didn't smoke. I would have gone up faster than Michael Jackson did in that Pepsi commercial. Oh, and I'm sorry about the ozone layer.



A photo of my first trip to Paris, France. How I found myself there is a really long story, but it was all because I picked up a Heavy Metal Magazine at the grocery store. I spent a lot of time alone on the streets of Paris but was saved by a great-uncle, who gave me some extra money for cab fare, and a boy named Christian I met in a club who ended up taking me sightseeing and then home to meet his family. None of them spoke any English, which made it very interesting, but I accidentally stayed with them one night (I was exhausted and fell asleep). They were quite hospitable and didn't chop me into pieces for fois gras. His mother seemed to adore me. When I left, of course, I was madly in love, but I never saw him again. I cried on the way home. It was worth every single tear.



Another photo of a now very lonely girl. This is the one-room flat I lived in while I finished up my classes to be a medical transcriptionist. I shared a kitchen with four older men who either had substance abuse problems or were on the lam. I learned never to approach them from behind without making a lot of noise. Despite their quirks, they were fiercely protective and very sweet. They also scared any potential suitors of mine away.

This is also the day I graduated from my medical technology classes. I'm opening a gift. This photo makes me a little sad. Only one of my friends knew I was graduating that day and only because she worked with me and found out. I didn't want anyone to know, but she and my family came to celebrate with me. I had been hired back in my hometown, packed up my things shortly after this was taken, and moved back to where I came from.



Age 24. I'm back in my hometown, and I'm happier. My two best friends are with me again. Here I am at Shaena's house clowning around with a bottle of tequila. Since her husband fought fires in the summer, I practically lived with the girl while he was gone. Things were definitely looking up at this point. Oh, and I'm not working for $5 an hour and living on catsup burritos anymore. Those college classes were a good idea after all!



Me in drag in my office on Halloween, probably around 2001. Age 31. In case you were wondering, I make one really FUGLY dude.



A photo of me today. Yes, I chopped my hair off for the summer.

I stopped chasing happiness and am working on nurturing it here at home.



There you have it. The face behind the blog.

Fourth Photos

Erik helping me feel more festive and getting ready for our little barbecue with my folks.



Erik wondering what the heck is going on outside.



Boppa and Erik enjoy the (illegal) neighborhood fireworks before the big show begins.

Happy Fourth of July

"Basically, it's hotter than a snake's ass in a wagon rut."

-- Adrian Cronauer (Robin Williams), Good Morning Vietnam

I'm sweating in my bathrobe at 9:15 a.m., and, to top it off, I just dragged myself out of bed! I have been sleeping incredibly well lately, with actual dreams and everything. Last night Lisa from next door called and asked if I would like to try a concoction she created from the thick meat of crushed dark cherries, mint leaves, diet cherry sparkling water, and a little Crater Lake vodka. We sat on her back deck while her husband pushed the lawn mower around the yard. The sun was sinking behind the mountains to the occasional sharp crack of fireworks that left smoky, brown smudges on the evening sky. After we went inside and watched a little of America's Got Talent (Who can resist watching a man prance around in platform heels?), Rob took me back to my door in their sputtering but surprisingly speedy golf cart. When I arrived, Erik was at his bedroom window bouncing up and down, his mouth forming the words "GOLF CART!" behind the glass.

Lisa told me she wishes she knew me better after I had Erik. She is one of the few people that admit they knew something was wrong with our baby right away. I explained to her that not many people did, and the ones who knew were understandably silent. I said that that there's just no great way to tell someone you think there's something horribly wrong with their baby. Even if there was, most of the people who love us were praying that they were wrong. I wish I had known her better, too, but, in any case, she does me a lot of good now. I am so lucky to have all of the friends I do. Most of the friends I have are of the tell-it-like-it-is variety. They tell me the truth and will defend me to the end if I need their help. I just don't ask them if my bottom looks big in a new outfit unless I truly want to know the answer.

The Wall Street Journal article about mainstreaming our children with WS has finally hit me. Basically, it was stated that mainstreaming children with special needs like WS is backfiring for a variety of reasons. The example they chose to use was unfortunate, as this student had what was obviously severe WS, and her teacher, who had not been given appropriate training, admitted she hated her job so much that she was becoming physically ill from the stress of handling children like these. I think this article was upsetting on many levels, but I am trying to turn the disappointment I feel into fuel for the battle in the school system. I am not out to create a perfectly normal life for Erik or pretend he doesn't have challenges. Normal is simply not going to happen one hundred percent of the time. What I plan on doing is providing him tools to live the life that he desires, including the best education possible to mainstream him in the real world, not just a classroom setting. If something works, we'll go for it. If it doesn't, we'll try something else, plain and simple. I will fight for whatever works, no matter what it takes. I may end up on the state capitol steps with a large sign at some point, and I'm okay with that. I know I won't be alone. The goal is to educate my son and train him to lead a happy, productive life. If there's one thing I have learned, it's that school is NOT and will never be the real world. I was very relieved to find that out for myself. The real world is so much better than I was led to believe as I sat in various classrooms. It wasn't until I left school in my 20s that I realized I could do anything I set my mind to.

How sad is that?

On that note, I need to work out and prepare a potato salad. My parents are coming to visit this evening, and I am barbecuing steaks and chicken. We will sit on our back porch with warm bowls of fluffy, sweet kettle corn and watch the fireworks explode off the cinder cone in the middle of town. We have a great view from here and will have the hoses ready!

Pedi-Cure All

This week was a hormonal roller coaster for me. For the most part, I am feeling wonderful physically and emotionally, but this week I just felt off. I was disturbed to hear about WWE wrestler Chris Benoit killing his wife and son before hanging himself, and when I found out his beautiful son had fragile X syndrome, it stuck with me all week. Mr. Benoit and his wife Nancy apparently fought about the care of their son before they died. She was feeling overwhelmed, and he snapped. Remind me never to do anabolic steroids.

I am feeling overwhelmed. My friend Shaena witnessed most of a now rare but especially snotty sobbing episode on Thursday and decided it would be best if we did something fun this weekend, so we did.

This concludes the depressing part of my note.

Saturday I put on some going out clothes: A pair of ridiculously expensive, flared jeans I never wear, a baby-pink top that shows I actually have a waist, and cotton-candy colored mules with completely impractical kitten heels that push me to six feet tall. My Barbie outfit. Without the extra 12 pounds I have been carrying around with me, things fit much better. I was very pleased. I drove out to one of our brand new shopping villages and met Shaena in the parking lot. We walked over to get a pedicure at a little nail salon.

I am not normally a fan of the strip mall-type nail place.

Sharp nail implements + Surfaces teeming with invisible bacteria = Horrible infections, the likes of which not seen since the Civil War.

One of my friends has titled each of these establishments here YOU PICK COLOR! in the past, as that is often what is screeched at patrons as they enter these shops. The last time I received any sort of nail treatment was years ago, and they were borderline verbally abusive. However, this experience was quite different.

We walked into a huge room crammed with women of all ages in various stages of nail care. There was dusky peach paint on the walls and no real ceiling. There were just hanging fluorescent tubes for lighting. It was obvious the place was new, as there were only two faded wall hangings on the far wall -- one picture of a pair of gorgeous feet and ankles draped along the length of a piano keyboard (how random) and one picture of hands holding a rose above the caption "French Manicure." A petite woman smiled at us and her mouth moved, but I was unable to understand much of what she said. I assumed it was a much more polite version of YOU PICK COLOR. We stepped over women's outstretched limbs to reach a clear plastic display on the back wall to select our toenail polish. I chose to depart from my favorite 1950s style bright red toes and selected a deep purple. Shaena chose a rich shade of orchid. We made our way to two empty spa chairs in the back of the shop and waited our turn. I found the remote on my chair and could not resist pushing the button labeled "thigh massage." Oh my. I was not disappointed. As we giggled and watched the goings on in the salon, Fox News silently loomed over all of us in the corner on the television by the front door, where there was a continuous loop of a flaming Jeep Cherokee lodged in a terminal at the Glasgow airport after a terrorist attack. The television was largely ignored by the women in the salon.

A man roughly half my size came out and began filling the glossy spa tub built into my chair at my feet. The water was scalding hot, and he gently but firmly pushed my feet off the rest into the tub. I bit my lip to prevent myself from screaming. He then turned on the air jets, which gurgled delightfully against the sides of my feet, and I soon forgot about my blistering skin and impending visit to our friendly neighborhood burn center. Soon I found myself to be extremely comfortable indeed. I looked over at Shaena. She seemed to be enjoying the button on her chair labeled "kneading action." She rocked back and forth as the chair worked her over and looked a little like like she was atop a horse on a trail ride. A woman came out to wait on her, and scoops of some sort of bath salts were sprinkled at our feet, turning the water bright blue. Soon we were being expertly buffed and filed. The man at my feet did not speak except once to ask if I was okay, causing me to wonder if anyone had previously freaked out and fled the shop, leaving a trail of wet footprints past the Lane Bryant store to the parking lot. My two smallest toes are shaped like question marks, and I would be lying if I said I enjoyed having them tweaked or touched in any way. My feet are generally very sensitive. His small, dark hands expertly slid over my calves and feet, slippery from lotion scented like orange blossoms. I'm not sure if I was more afraid of losing control of my relaxing bladder from the sensation of the swirling warm water around my feet or accidentally reaching some sort of horribly timed, socially inappropriate climax from the massage I was receiving. Either way, I whispered to Shaena, it was a recipe for being 86'ed from my our new favorite nail salon. The technicians chattered in Vietnamese, their seemingly serious conversation punctuated by sharp bouts of laughter. The man working on me tapped my foot when he wanted me to move it, and I felt a little like an elephant at the circus being prodded to with a cane to perform for an audience. Soon our feet were being dried in fluffy, white towels and our toes began receiving layers of lacquer. My toes began to gleam, looking a lot like like the paint on the side of a carnival ride on a bright summer day. The technician at Shaena's feet admired the flowers in the tattoo on her lower leg and hand painted matching flowers on her big toes. We were then very quietly and efficiently led to sit with our feet under drying lamps in front of a mountain of dog-eared People magazines. What fun!

From there, we said our thank yous and took our happy feet back to the car, where I exchanged the rubber flip flops I had brought for my pink mules, and we walked across the parking lot to the Italian restaurant to enjoy some crusty bread and hot crab dip with tall glasses of blush-colored sangria poured over ice. Our evening had just begun.

Ah, the healing properties of girlfriends.