Our experiences with Williams Syndrome, a rare genetic disorder.
Saturday, November 29, 2008
Seasonal Affective Disorder
He is a blur as he runs circles around the house and pushes a toy truck. Sensing my complex tangle of emotions with his heart-radar, he screeches to a halt and looks at me sitting in my favorite spot on the couch with a blanket pulled over my lap. He expertly softens his voice, which he he has been using to create the rude, hoarse rumble of an engine to power his truck for the last 20 minutes, and asks, "Mama, are you happy?" He looks at me with pure-white hope in his eyes, desparetely willing my mouth to form the word "yes." One time when I admitted that I was sad, he burst into tears, and we both cried. I don't do that anymore.
I feel a wide smile forming on my face, despite the horrible holiday ache that is setting in, and tell him that his mama is just fine. He turns his head to the side slightly and stares at me more intently, as if he doesn't believe a word, but he lets it go. He smiles politely and pushes his truck to another destination in the kitchen. As he passes, I see one of his little toes boring a hole through yet another set of PJs.
The Christmas lights create chase away the darkness of morning, and my coffee steams in the confines of its cup. My lips draw from it, and I feel it warming my insides. I will get through these strange couple of months that bring the dark things that I have worked so hard to suppress to the surface. I will get through them, just as I do each and every year, and put them away with the decorations in January. Starting a new year not knowing what is ahead has always scared me to death, even when I was alone and things were simple. It's thrilling and frightening all at the same time.
There is much to be thankful for this year. Despite the familiar holiday ache setting in.
Christmas 2007 is now history. Brian's parents, my parents, my grandmother, my brother and his wife, and my uncle came to celebrate the holiday with us here, and it was a relatively relaxing, worry-free holiday. Unfortunately, this was preceded by three days of head-shattering migraine headache that kept me in a drug-induced stupor which very sadly failed to make a dent in the pain. As it turned out, my very last resort, a single muscle relaxant recommended by one of my best friends, loosened its death grip on me just before the holiday began, and I was finally able to prepare for the holiday and enjoy myself.
We all gathered around the tree to open presents after our traditional Christmas Eve dinner of hot clam chowder and bread, and Erik opened presents for the first time as if he had been doing it for years. This was the only time I felt close to being emotional about much of anything. I watched his meaty fingers find weaknesses in the festive paper and rip, exposing the colorful goodies inside. He cocked his head as he examined each gift, finding himself entranced by some of them, especially the book my mother made for him with photos of vehicles like the ones driven by the people he knows and loves.
Generally speaking, children with WS have little to no interest in toys most children find fascinating. Getting my kid to pretend play with toys is almost impossible unless there is a toy car with spinning wheels involved. Play sets collect dust in the closet or are packed up to take to the children at his school who cannot afford them. Thankfully, all of the gifts Erik received were wonderful with an obvious degree of thought about his personality and disorder behind them. When I sat down to read blogs yesterday, I was relieved to see that Tara and Bob, fellow WS parents, echoed a lot of my feelings about gifts and toys for our children. Tara explained that Dr. Mervis, a WS researcher at the University of Louisville, once told her, "Most children with WS do not play with toys. They watch their parents play with their toys." It's true, and it's one more reason I feel ripped off. However, Tara also explained that her daughter's joy is "about being surrounded by her family and unwrapping and tearing every piece of paper in sight." I found myself busy around the house at times I might feel sadness seeping in, and it didn't really touch me this holiday. On Christmas Day, my good china dishes emerged from their dark places in my cupboards, and the plates were soon heaped with a feast I had assistance preparing: Ham, turkey, cranberry salad, stuffing, green bean casserole, bread, and pies. My mother brought a tiny one-layer cake with her part of the feast, and after dinner we sang "Happy Birthday" to Jesus, something that seemed a little strange while I planned the holiday but instantly became a brand new, natural tradition when I saw the amazed look on Erik's face as we all began to sing.
Last night Brian ran hot water into our jetted tub and added raspberry-vanilla bath salts, which smelled wonderful. We extinguished the lights and opened the blinds covering the windows around us that point towards the desert landscape. Light from the chunky bulbs of our twinkling Christmas lights that Brian strung along the rain gutters outside zipped around the house above us as the scented steam rose from the water's surface. I took a deep breath and realized that I successfully survived another holiday. I actually felt as if I had accomplished something. I realized that gatherings feel like work now. I feel like I am swimming against a strong current and am constantly laboring. I wonder if I will ever truly be able to relax and enjoy Christmas with the same trust that all will be perfect ever again, or if I will always be holding my breath waiting for the next wave of emotion to hit me. They will never be the same, but maybe holidays like this will be an adequate break in this crazy life to at least stop and count my blessings. The turkey, trimmings, and gifts seem sort of ridiculous to me now, but they are a welcome distraction and a big dose of what is deemed "normal" in this chapter of the American Dream. I guess could use a little more normal in each and every day. I just wonder if this new numbness I feel will ever subside. Maybe it's best that it does not.
Oh. Just one more thing. Santa brought me a Chia pet.
Random Thought of the Day: I think anything by Mannheim Steamroller is hopelessly silly (unless there is some sort of cool laser light show involved).
I sang with Erik this week during our daily cuddle time on the couch after his nap, and when we finished a song, he said, "Wonderful." It was very Lawrence Welk (without the accent).
I'm considering having the fasteners on Erik's leg braces redone. The Velcro is not sticking well anymore. At this point, I can't imagine he will be out of them anytime soon. If we leave them off for even one day, he goes right back up on his toes. I usually leave him out of them at home and let him run unfettered, but when we are out in public and he is unsteady, they work wonders, as he falls less. His left toe continues to swing in, especially when he is out and about.
Erik has an appointment with Dr. Mike, my favorite dentist, today. Brian took him last time while I attended a parent meeting, and he said it was brutal but quick. We are going in every six months, and so far he has not needed the lacquer to protect his teeth. I don't plan on having work today, and we will go to my folks' house afterwards, where I will enjoy a glass of wine and try to relax.
My holiday menu planning is complete, and I am looking forward to having everyone here this year, especially my little brother and his wife. I am baking a turkey, and my mother is bringing over a ham. Brian has twinkling white lights up on the house.
A WS family from out of town e-mailed me and told me they will be here to celebrate the New Year. They invited us over to the house they rented at a nearby resort for a play date. I have said it before, and I'll say it again. There is just nothing quite like being around another family wearing our shoes. I can relax and actually think about WS less. What consumes me a lot of the time simply loses its power. When I'm with another WS family, I am able to feel like a NORMAL mother, and I don't worry about what anybody else is thinking about me or my kid. I savor every moment of it.
I am missing the other families I know and hope to see them more and create more memories in 2008!
Let the children come to me, and do not hinder them, for to such belongs the kingdom of God. —Luke 18:16
This week is a blur. Because I have been sleeping well after collapsing when the day is done, my blog has fallen by the wayside. I didn't make it to 3 a.m. today, but tonight brings another opportunity to sleep.
Yesterday was busy, to say the least. I dropped my bawling, red-faced boy off at preschool and drove to the grocery store over some very icy roads that resulted from a gorgeous but less than enthusiastic evening of tiny, dry snowflakes. When I finally arrived home across town and had put away most of my groceries, I decided to pull down the ladder in our garage and haul down our heavy boxes of Christmas decorations from the attic. I have not done this before, and halfway through the process of going backwards down from a dizzying height with large amounts of weight held above my head, I realized that if I fell, I would lie for hours undiscovered on the cement floor under a box of tinsely Christmas cheer. It probably wasn't the brightest idea of mine. Despite this, I am highly enjoying being in shape and successfully moved what seemed like thousands of pounds of tree and home trimmery into the living room. Brian and I purchased a faux tree for the first time to make our lives a little easier and enjoy the season longer. Because our tree sits directly in front of a wall of windows through which the sunlight streams and seems to instantly transform the classic holiday icon into a giant, flammable hazard, it was a good move. Our new tree is nine feet of manufactured love directly from China, adorned with 1800 white lights. I stood atop a wooden bar stool to install the angel and worked my way down, taking each of my ornaments from the boxes. There was tiny, green champagne bottle from New Year's Eve 2000...the wooden beach scene Brian bought when we traveled to Hawaii for the football game last year...the needlepoint wreath my mother stitched in my school colors the year I graduated from high school almost 20 years ago...the ceramic ball somewhat crudely painted with a cat that looks exactly like Gracie and the year 1998...the last construction paper ring that was once on a chain I made to count the days I would see Brian again when we were dating and he lived miles away...the crystal Noah's Ark that I received when Erik was born...the sparkling snowman that I discovered in my mailbox from a dear blog-friend and fellow WS mother last year. Each ornament means something to me and tells a story. I enjoy reminiscing as I decorate. I received two phone calls as I worked, one from Erik's teacher and one from the bus driver, stating he would be very late, and I had an extra hour to myself. The tree ended up looking lovely. I placed the ancient set of three wise men I adored as a child in my grandparents' living room on top of the television and hung the stained glass star in the window. I filled a crystal bowl that was once a wedding present with glass ornaments from the collection of our family friends who passed away and placed a candle in the center. I hung our stockings on the wooden railing of the stairs. I placed the poinsettia placemats my mother sewed for me on the kitchen table. By the time Erik arrived for lunch and his nap, the place looked great. Even my Christmas cactus is in the spirit, heavy with buds that will soon produce bright pink petals. Erik checked everything out and said, "Christmas tree!" I asked him if it was pretty, and he answered with the strange Cajun accent from nowhere that often flavors his speech.
"Ahyup."
After that, I worked a half day during Erik's nap. The phone seemed to ring all day long with someone wanting something. The pediatric cardiology center called to inform me that we needed to ignore the letter that would soon arrive stating that Erik was no longer required to have echocardiograms. The genetic counselors at the children's hospital apparently insisted we receive the studies yearly through age 5. While this means that the chance things may worsen is real, I have decided to give myself a year off from worry about Erik's heart and enjoy the good news we received after his study instead. Being in good hands at this particular clinic also provides a great deal of reassurance. I have enough to worry about now with Erik's worsening anxiety, growing difficulty being among his peers, and horrible sensitivity to certain noises. That's quite enough for me to handle now, and we are doing the best we can. I have even turned off most of my own anxiety about the holiday and am beginning to enjoy the sparkle. No matter what Erik struggles with outside the home, I am bound and determined to create a haven for him here.
Because Erik has been so severely delayed, this is the first year Erik has truly begun to grasp the concept of the holidays and the happiness that comes with them. Because of that, I am finally enjoying the magic most mothers take for granted, and I have the spirit of the season back. If I stop long enough to absorb what it all means, I feel comforted and am certain that no matter what happens to our son, he will be loved and cared for by something much bigger and more powerful than I can understand at this point in time.
Who knew there was hope for an old Grinch like me?
My brain and my heart are full tonight. I don't even know where to start with this post.
Thursday morning we began a six-hour drive across the desert to visit Erik's aunt, uncle, and two cousins. It has been many years since I have been able to say I have been in the middle of nowhere geographically speaking. What made this trek especially spooky was the fact that before we left, I did a frantic load of laundry and in my haste forgot to extract my cell phone from the pocket of my jeans, rendering it nothing but a fancy paperweight in a matter of seconds. Not that I would have gotten a clear signal where we had to go, anyway. We spent hours traversing miles of volcanic rock and sagebrush, passing through newly-born ghost towns offering us nothing but sagging, eerily blank gas station signs and shattered windows. We stopped once to use the restroom at a truck stop, and Brian bought a cup of coffee that was dispensed from a machine stating it wasn't for wimps. It tasted like I imagined truck stop coffee would. We continued our journey and saw nothing else but an occasional herd of striped antelope for hours. This was Erik's first trip out of state. Although I was nervous about how he would do, he was, of course, amazing, as always, munching on cookies Boppa and Gua provided and watching Sesame Street for just the last hour of our trip.
The weather held beautifully, and we spent the weekend relaxing at Brian's brother's house in Idaho. Oh, yes, there is a God. I love this family to death. Amazingly, despite my neurotic/paranoid/antisocial tendencies, I am completely relaxed in their home, and my sister-and-law always greets me as if we saw each other just a few days ago. After Erik adjusted to the kids, he did fairly well, although he certainly didn't interact with them like a typical child would and clung to us the majority of the time. His cousins are aware he is different, although they have yet to understand exactly why, and they tend to be sweetly protective of him. We saw him make giant strides in a matter of days. He used the term "upside-down" correctly, much to my surprise, and played with his older cousin for an extended period of time. He insisted sitting with us the day his cousins enjoyed children's movies in the other room, and, although he did wonderfully overall, he still preferred our company over the children.
After a security check, we were allowed to tour the more public areas of the nearby military base, and the sheer bleakness of it all along with the heavy planes we saw sitting on the tarmac ready to rip into the sky brought stinging reality to my brain and a strange, persistent nausea to my stomach. It's impossible to ignore the fact we are at war in that particular setting and what that means to our family. We mingled with military families at the BX, a shopping facility that appears a lot like a less fancy version of Wal-Mart at first glance but feels very different. I was perusing a rack of incredibly-priced, fabulously-scented shower gel when I heard a very pleasant female voice on the loudspeaker announce, "Auntie Nancy, could you come to the jewelry counter, please?" I thought I was hearing things, but it just so happened that my oldest nephew had gotten separated from us and had asked a clerk for help. I am proud to say that I have now been called into action on a military base.
We slept well in general, although it was dicey at times. The nearby trains that shrieked every couple hours upon their arrival caused Erik to kick fitfully in his sleep or cry, but we had been warned by my sister-in-law before we arrived, and we left his reaction to chance. Was it difficult at times? Yes. Was it worth it? Definitely. It's these little things that serve as reminders that no matter what we do or where we go, there is no vacation from WS. By the last night, Erik cried the horrible, strange, colicky infant cry he still has not left behind at the age of 3 for at least an hour before he finally settled into a restless sleep. The next morning he very simply asked to go home.
It was the first time in a long time I wasn't itching to go home after two days on a trip. After traveling a bit in my younger years, I desire nothing but to be home. Thankfully, I felt as if I was home all Thanksgiving holiday. While being around typical children can be heart wrenching, I love my nephews with all of my being and am so proud of both of them and who they are becoming. Looking at their photos upon our return, I am shocked at how grown up they suddenly seem. There was just one moment during which I thought my heart would break into a thousand pieces. Without warning, I realized I desperately wished things had turned out differently for us. However, the rest of the time brought nothing but happiness, and I know that even in the midst of our challenges, we are surrounded by friends and family who love us and support us no matter what our situation brings. As far as an emotional hangover, it did attempt to hit me today, but I was so incredibly busy today that I didn't have time for it.
Instead, I spent the morning acquiring a new phone from a young man who instantly and inexplicably fell all over himself the moment I came through the door of his store. I joked with him and asked him if he was awake yet, which only seemed to make him worse. I finally completed our transaction and left with a brand new phone with a Gwen Stefaniringtone. I then spent the remainder of my day trying to complete four hours of bone densitometry scan reports, two trips to the vet, countless loads of laundry, and unpacking. By the end of the day, I found myself at the animal hospital nodding thoughtfully before a series of illuminated films showcasing the twisted, thickened insides of my cat, who seems to have been stricken with either cancer or irritable bowel syndrome. I chatted with a veterinarian while Gracie-Cat shook off the effects of a double dose of sedation used to tame her during the studies, which ended up costing nearly $400. As I was interested in adding a little weight to my vehicle with a snowstorm on its way into town after the appointment, I stopped to stand in line to pay $3.25 a gallon to fill up my Jeep. I was feeling thoroughly financially ravaged by this point. It was there I found myself rummaging through my purse to the hoarse screams of an increasingly conscious, pissed-off feline when I saw the empty window in my wallet and realized the flustered young man who had helped me with my phone in the morning had failed to return my drivers' license. As it was five minutes to five, I left the gas station at mock speed, peeling out in the parking lot, making it across the intersection to the wireless store just before I assumed they closed. The sheepish clerk reached under the counter and stammered an apology that made no more sense than our conservation from earlier in the day. I smiled but had no time to respond. I had a screaming, increasingly pissed-off cat with freshly shaved buttocks freezing to death in the back of my car and had just spotted a familiar truck with two familiar shadowy silhouettes inside turning off the highway just outside the store.
No time for deep thoughts or reflection. I had a little boy and his father to meet for dinner.
"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!
Married to Brian in 2001. Our son, Erik, was born in October 2004. Erik was diagnosed with Williams syndrome by a geneticist in March 2006 at 17 months of age. The diagnosis was confirmed by FISH testing a few weeks later.
