Erik Quinn: The Heart of a Family: September 2006

Thursday, September 28, 2006

I Love a Good Bar Graph

Most of my posts are simply gooey with emotion. I should install a napkin dispenser for my readers. I am learning not to apologize for being a very emotional, passionate person. That's just who I am. However, today I am going to attempt to venture in another direction.

I am married to a civil engineer who seems to find himself brimming with excitement at the sight of a pie chart or bar graft. In the seven years I have known Brian, I have never ceased giving him grief about his love of measurable data and the expression of such. However, today was the very first time I have been truly excited about a graph of any sort. Our Individualized Family Service Plan (IFSP) printout was completed for our review, and I received a copy of it today at Erik's home visit.

In just six months, Erik has demonstrated great improvement in the following categories. The test is based on the abilities of an average 3-year-old child, and Erik is just shy of being 2.

FINE MOTOR -- 29% improvement (to 74%)

GROSS MOTOR -- 35% improvement (to 82%)

ADAPTIVE -- 14% improvement (to 66%)

COGNITIVE -- 33% improvement (to 59%)

SOCIAL COMMUNICATION -- 29% improvement (to 57%)

SOCIAL -- 12% improvement (to 60%)

His fine and gross motor skills are looking much better, which is promising. As you can see, his scores were previously abysmal. He wasn't walking, talking, or doing much six months ago.

NEW TIDBITS: Erik said "socks" for the first time this week (right before he dropped them in the bathtub full of water). He can wave with great enthusiasm, much like he is standing on the confetti-covered deck of a cruise ship leaving port, and can say "SUBARU!" He tries to brush his own hair and can say "brush." He suddenly decided to walk across the living room with his eyes closed and his arms outstretched one time this week for no good reason, which made me laugh very hard. He played with a car during his therapy session today and didn't turn it over once to get to the wheels. He simply rolled it across the floor many times and looked like a perfectly typical 2-year-old kid. That is, he looked normal until he suddenly put his ear to the floor to see the car rolling from different angles. Bev explained these strange little behaviors of his as having an autistic flavor, as Williams falls into the autism spectrum disorder category. I find most of Erik's quirks completely weird but undeniably adorable. He wouldn't be Erik if he was any other way.

For everybody out there that is waiting in the middle of a Sahara desert-sized plateau with their kid for something new to happen, I hope you can see just how much can change in a matter of days, weeks, or months.

Wednesday, September 27, 2006

Erik Haiku #1

Belly laugh morning
Tippie-toe toddler kisses
Sunshine in his hair

Tuesday, September 26, 2006

Katzenjammer Headache #57

I survived Erik's group session this morning. I came home and immediately devoured a giant plate of nachos, despite it being 10 a.m., and one of Brian's diet Code Red Mountain Dews (sweat of the devil). I'm in a weird place in my head, which is pounding.

I explained to the therapists that Erik was not sick last week but had simply shut down again, albeit to an uncharacteristic degree, while in his class. They took note of that and were more hands on with him, stimulating him accordingly. Once he got into the swing of things and seemed interested in what was going on in the classroom, I went down the hall. I was practically a free woman with my hands on the front door when I noticed another mother I know sitting in the room where they hold the parents' group meeting. I decided it was time to make my presence known in there. It has been months, and I need to stop feeling sorry for myself, nut up, and stop running out the front door. Besides, I had the convenient excuse of going in for just a minute to say hello to this other mother. I found the most uncomfortable, straight backed, made-proudly-in-the-USA-by-the-Amish chair in the room next to this woman. She barely acknowledged my presence, but I stayed anyway. It was like a train wreck I couldn't turn away from. Unfortunately, I was a passenger on this doomed train. There were initially five of us parents in the room, including one obviously good-hearted father who laughed too much, although two other women joined us later with small kids in tow. A therapist whom I don't know came in to join us. She was brisk at first, asking me what I meant about something I was saying to someone in the room when she entered, and she certainly didn't really make me feel very welcome; but she didn't really make me uncomfortable, either. We were in a small, coffee-scented room lined with bookshelves and a nice view of some ponderosa pines outside, their waxy needles glistening in the morning sunshine. The books behind me seemed to be on topics such feeding difficulties, diseases and disorders, and parenting with titles like Parenting for Dummies and Mixed Blessings. Thankfully, I saw no books by Dr. Phil. There was a disabled teddy bear sitting happily in a miniature wheelchair on the shelf above me. The woman sitting in the chair to the left of me talked practically nonstop. From what I could determine, she had at least three children, one of whom was a teenager. At least one of her children had a genetic form of rickets, in which there is a vitamin D deficiency and the bones do not plate. She herself had a brace around the ankle I could see from where I was sitting. The therapist began talking about giving children choices and modifying behaviors, providing us with a handout on the subject. A lot of it was common sense, but I find that I am so steeped in Erik's special needs that sometimes it is nice to be reminded about the "normal" things we might need to deal with eventually. In a thinly-veiled, abrasive attempt to get me to participate in the conversation, she looked directly at me at one point and asked if I gave Erik choices throughout the day. I stated that Erik hasn't had an opinion on anything at all until this point but that I would incorporate this more as he became interested. That was the extent of what I said during the session. I don't think I will be opening up to this woman anytime soon. There was an exhausted young mother of two there with a daughter who wouldn't sleep. She very confidently and unapologetically asked Brenda, a parent advocate who came to join us toward the end, if she could get her kids more diapers, as they were out of money. Brenda is a very friendly, outgoing woman who seems great at connecting with people and getting parents what they need in terms of services and such. She handled the situation beautifully. When everything was breaking up and we were standing up to leave, we got on the subject of books on kids. When I told Brenda I had not cracked the What to Expect book on toddlers, she very quickly advised me not to. A couple other mothers in the room agreed that books were generally too depressing. I felt pretty good about that little jolt of validation and understanding. I think I like Brenda. She remembered Erik's name, too. Big points for Brenda.

It was a long 1-1/2 hours, and I felt exhausted afterwards because it was pretty depressing, but I feel comfortable enough to go back once in a while, if not every week. I found the other parents somewhat annoying but fascinating with some potentially endearing qualities as I listened to them. It is nice to know we are all struggling. In a lot of ways, I am thankful for the diagnosis of Williams syndrome. It is obvious I am not fighting the same battle as the other parents in that room, but I still related to them here and there. It could be worse.

Monday, September 25, 2006

I Don't Heart Mondays

I can't believe the weekend is in the history books already. I never left the house once, although I managed to get outside in the yard and enjoy the warm sunshine. Brian went with friends to watch Oregon State play Saturday. They tailgated and cooked manly slabs of meat and crab on our barbecue. I was out of energy and just hung out with Erik during the day. We played with his thrilling collection of rocks and got on the swing (well, one of us, anyway). Erik yelled, "Wheeeeeee!" when he started to swing into the air. In the evening, I baked my mother a caramel apple cheesecake and marinated pork tenderloin for her birthday feast Sunday, and Erik worked beside me in the kitchen, emptying the cabinets of all of their contents and rolling Tupperware around on the floor. I began watching the game on television, but it was a blowout, and I decided on my cop shows instead. Brian got back around 1:00 a.m., and we all slept pretty well.

Yesterday I watched Celebrity Fit Club (How can you NOT want to watch Isaac the bartender from Love Boat lose weight?) and got things ready for my folks to come over for dinner. Erik and Brian went outside. Despite wearing completely inappropriate attire, Erik decided to run through the sprinkler. I watched them through the kitchen window. He would run up to the sprinkler, put his face in the spokes of water shooting up into the air, and make one of his funny faces. I saw Brian trying to lead our saturated little boy out of the yard at least three times. Each time, Erik's face would quickly turn tomato red, and his eyes would squeeze shut in one of his famous quiet ugly cries. His eyes close so hard when he cries that he looks like Dizzy Gillespie to me. Brian looked a little annoyed, and I was having fits laughing from the safety of the house. Erik sure does love that sprinkler.

My parents spent some time at hospice this weekend with their friend dying of cancer and were ready to come over, relax, and have some fun. We were all glad to see them, especially Erik. It was indeed a lot of fun but I hated to see Sunday coming to a close. It's not fair! Today I have an appointment at the dentist to pick up my new night splint (I grind my teeth and clench my jaw in my sleep). I have to leave the house three times in four hours this afternoon and am not entirely sure how I will manage to accomplish any work today. I foresee working this evening after Brian returns from attending a yawn-inducing city meeting. That means no book club or fun for me. Sigh. Is it Friday yet?

Saturday, September 23, 2006


by Dorothy Ferguson

How very softly
you tiptoed into my world,
almost silently,

only a moment you stayed.
But what an imprint
your footsteps have left
upon my heart.

I certainly don't intend to be the Sylvia Plath of the blogging world, although I do get a bit dark sometimes. I assure you that I laugh on a regular basis to the point of unladylike snorting on occasion. This week, however, has been a darker one for me, beginning with Erik's horrible appointment. After watching Erik walk all week, I am now certain orthotics are appropriate and feel hopeful about them. My last post generated the usual wonderful, warm avalanche of phone calls and e-mails. I assure you that I have not placed my head in the oven and have gotten out of bed every day this week without fail. I fully intended to post something side-splittingly, hopelessly funny today. However, my mind doesn't work that way, as I have little control of what is generated there. I suppose my mind has a mind of its own. My head isn't pretty inside a lot of the time. It is a cluttered mess. Before I write, I usually find myself up to my knees in an ever changing wall-to-wall collection of thoughts. At 3:00 this morning, a lot of what I found on self-examination were thoughts of loss. As the leaves outside begin to turn colors and threaten to let go, I can't help but think of the fall I lost Scooter.

The whole experience seems like a faded dream to me now. Brian and I, naive as we were at the time, drove to my parents' house the day we found out we were expecting. Being medically minded, I knew about miscarriage but was certain that this was not something I would need to worry about. My body was strong, and I took decent care of myself. I believe we even had a bottle of champagne with us that day, which everyone sipped while I had a fruit-flavored sparkling water. Everyone was appropriately excited, and everything was right with the world for weeks after the news. However, the first sign that something was wrong came without warning one Sunday before church. After the service, my parents suggested a Sunday drive, but I requested to be taken directly home. I didn't call the doctor that day. I was morbidly calm and knew in my heart there was nothing anyone could do for me. The next morning I called to schedule an ultrasound. My parents came to sit with me at home until Brian came home from work, and we watched television together in relative silence. Brian took me to the hospital that afternoon for my very first ultrasound. I remember sitting on polyurethane-covered furniture in the small waiting area next to a gigantic fish tank, which made me hungry for Chinese food for some reason, thumbing through magazines that addressed weighty issues like split ends and nail polish dos and don'ts. There was a Bible there, too. Neither choice seemed appropriate to me at that moment. We were called into the cramped, dark room. I put on a gown sized for a tiny woman most likely made by a tiny woman in some corner of the world and took my place on a table as if I was waiting to be sacrificed on an altar. The keyhole-shaped window appeared on the computer screen, and I could see my internal organs in all of their pulsating, veiny, grainy glory. Without any sort of fanfare or warning, a bean-shaped morsel appeared on the screen in the center of it all, and I remember actually smiling. I asked the technician if that was the beginning of our baby, and I honestly don't remember receiving an answer. He was very quiet, clicking the mouse on the computer and measuring its length to determine when it had ceased being a living thing. He quietly explained that the little heart had been still for two weeks and pointed out that it was sinking like a stone inside me over time, getting ready to exit my body and the world. He said he was sorry and that they would give us a couple minutes but needed the room for the next patient. From there, we went to the doctor's office where I had to sit in the middle of a group of pregnant women reading articles on nail polish. I was called back to receive my very first exam by a male doctor, a painful, traumatic experience inside another traumatic experience I didn't ask for. He explained that what I would experience physically would be like a thunderstorm. He told me the pain would be alarmingly great but not to worry, as it was perfectly normal and would subside gradually. To this day, the sound of thunder makes my insides cramp and my stomach feel sick. We drove Brian's Jeep Wrangler that day, and I am sure that everyone in a 15-block radius heard me through the flimsy plastic windows wailing all the way home. I wailed and wailed. I seemed to be channeling a foreign woman on the nightly news who wore a tent-like burqa and wrung her hands in a bombed-out building. When we arrived, a box of maternity clothing I ordered was sitting on the front step. Brian offered to set it on fire, and I laughed loudly and inappropriately, but I found what he said horribly funny and very appropriate at the time.

That night we went to bed like usual, except I had the strange knowledge there was something dead deep inside me. I wanted it out immediately. I drifted into soggy, tear-filled sleep with the help of Unisom but was awakened shortly thereafter by the first wave of agonizing pain. I remember getting out of bed and dressing in comfortable clothing, not having a clue what time it was. I went downstairs to turn on the television. I vaguely remember watching Conan O'Brien and even laughing a little. The rest of the night I spent facing hours of pulsating waves of pain, the likes of which I had never known before or since. Morning brought the virtually unspeakable, indescribable trauma of having to look upon that little bean again, not knowing what I was supposed to do with it. I panicked and quickly discarded it like trash but felt a horrible sense of shame and guilt for that action later. I had wanted it removed from my body, and now that it was gone, I wanted it back. The physical pain ceased immediately as if it had never occurred.

Our second pregnancy was pretty much identical, but I didn't have the emotional or physical trauma that went with the first loss. It was over a year later. There was no bean. There was only an empty screen on the ultrasound machine showing that anything that existed before had already passed just six weeks into the pregnancy. My doctor said that in the old days, I would have never known I was pregnant. I wanted to bitch slap her, because it was quite evident to me. I had the usual three days of hangover-like agony followed by weeks of migraines and then thought I was bleeding to death. In a strange way, I felt cheated out of having even the physical pain of the loss. There was almost nothing to prove that this life existed except for a positive pregnancy test lying in a desk drawer. Even my own doctor seemed to deny this life existed.

My physician recently told me that there was a 50% chance something was genetically wrong with both of the pregnancies I lost. I have obviously been completely unsuccessful staying pregnant or having a genetically normal baby, and I accept that, although it has been a little hard on me as a woman. I'm sure a lot of the people who love me would pat me on the back and reassure me that I'm great at it, but the results are undeniable and speak for themselves. Doctors will often brush off one miscarriage but take notice, ask about family history, and subject you to an alarming amount of blood work after two or more. My blood work was all normal in terms of clotting, thickness, makeup, etc., so that leads me to believe that my problems could have been entirely genetic. They also perform an ultrasound every five minutes when you manage to stay pregnant. I know this from experience. I sometimes wonder what was wrong with these pregnancies and whether or not they would have been physically deformed in some way. A coworker of mine carried a horribly deformed, genetically abnormal baby almost to term. When this little baby was born, he had already passed away. The hospital staff wrapped him in a blanket and took a photo of his face, which turned out to look like the face of an angel. He was beautiful. It was the only perfect part of his tortured little body. This woman carried the photo in her wallet, and the girls in the office cruelly whispered about her behind her back. I said nothing but also did nothing to shut them up, and I regret that. She was only honoring and remembering the baby she loved.

After my first miscarriage, I ordered the stone pictured above. It was made by an artist in Wisconsin and seemed to express the shattered beauty of something loved deeply but lost forever. It sits outside by the front walk now, but I originally had it under a tree where we last lived in a quiet, shady corner of our back yard. That is where I sat sometimes and talked to Scooter. I sat in that corner silently at times during my subsequent two pregnancies and felt peace there. It is now in the sun for me to see every day. It's awful, but I don't remember exactly when my babies were going to be due, although I can figure out the months if I think hard enough. I suppose it was too painful for me to remember at the time. Even the memories I write about are getting very fuzzy as time goes on. The pain, although still present, is fading with each passing year and has been covered by a newer, stronger type of pain and new struggles every day. However, I will always remember and honor these lives because they were loved and made me feel like a mother for the first time. They were important to me, as they were part of me. Every time fall is in the air, I am reminded how honored I was to carry and protect those lives like flickering secrets, even if it was only temporary. Fall is still my very favorite season.

Wednesday, September 20, 2006


Through the gridded pattern of the gymnasium window I spot him cuddled in a therapist’s arms, far across the room from the other children who chatter, laugh, and climb with maddening ease despite their various disabilities. His little body slumps limply, and he is alarmingly still and doll-like, cheeks flushed and eyelids heavy, threatening to shut out the world entirely. Adrenaline pours into me, and I throw open the heavy door to get to him. Panic fills my chest, and I scoop him up to examine what is there in the lacy, white stars that fill his blue eyes. I see one corner of his mouth pull upward in a tiny gesture of friendly recognition -- one of his famous Harrison Ford-like half-smiles. After this small effort, his face nestles against my neck, and he is still again.

How can a heart possibly break when it is already broken? I feel the weight of that horrible brick in my brain, heavy as ever, unaffected by six months of this. Panic fills my chest like chlorinated pool water, stinging and harsh, and I begin to drown in it. I feel myself afflicted with the familiar, awful, almost unbearable ache I know so well and fight stupid, hot, useless tears in front of these people are under the impression I am strong and brave.

I am absolutely powerless…

to make it right.
to make it fair.
to make it easy.

There is no permanent remedy for this pain. There is no relief in sight.

It is not right.
It is not fair.
It is not easy.

It will never be.

Instinct steers me firmly, and I open my heart to the voice I have learned to hear in the darkness. In a matter of seconds, I am infused with confidence and the knowledge that although I have no answers, I have no doubts. The simple truth is that there is only one path for me to take, and there is no turning back. There is nothing for me to do but love my child fiercely. That is what I am meant to do and what was meant to be. It is the only thing that feels right, fair, or easy anymore. It is what we both need more than anything.

The mystery of my child is simply not for me to understand, at least for now.

I bundle him up and carry him outside into the bitter wind, holding him close.

Tuesday, September 19, 2006

Adventures with Nancy

I am standing at the sink in the cabin again, placing a heavy, wet bowl on the wooden drainboard by the sink. The red and white gingham curtains over the window in front of me are pulled tightly closed, as are the rest of the curtains in the room. I know somehow we are deep in the woods, but the curtains seem to be permanently drawn here, and I have yet to see outside. There is the warm scent of cinnamon emanating from the tiny oven. Erik is sitting on the soft, braided rug covering the plank floor behind me, playing with a wooden train set and making the happy baby noises I love so much. When I turn to look as I dry my hands, he looks up at me and smiles...

No more dreams for me. I didn't even make it to 3 a.m., and I am wondering how I am going to make it through my busy day ahead. Erik has group therapy at 8:30 today. I always manage to somehow make it when I don't get much sleep, although it requires auto pilot and a tanker of coffee. A lot of the time I don't realize how tired I am until Brian gets home and I am allowed to collapse. Of course, my throat feels sore this morning. I think the last week has been pretty hard on every cell in my body. It's days like this I am thankful I no longer have to don office attire, prop myself up, and look remotely lifelike.

I did have a wonderful weekend. We celebrated my father's birthday Saturday morning. I made breakfast enchiladas, and my mother brought over a warm-from-the-oven berry pie. Brian left us eventually to play in a flag football game. After some nice quality time with my parents and a nap, Erik and I visited Dominick and Kathy for a while that afternoon, although Erik ended up sitting motionless with a cracker in his hand for most of the visit in his horrible but familiar shut down mode. When he had enough and began to cry, I decided to take him home. The instant the door shut behind us, he snapped out of his trance and started happily yelling, "BUH BYE! BUH BYE!" It's beyond frustrating knowing a lot of people with kids don't see Erik's true self most of the time. I look at him slumped over and want to cry, although it happens a little less often lately and rarely results in tears anymore.

Sunday I wanted to get some exercise and wondered out loud if the neighbor girl would walk the trail across the road with me. Moments later, the phone rang, and it was her. She invited me to go to an antique show in the park. It was a giant show, and I found some sparkly rhinestone jewelry for a yet unplanned special occasion. The only part of the morning I didn't enjoy was seeing some of the things from my childhood on display, now considered "antique." That's as bad as hearing some of my favorite songs from high school on the "classic rock" station. From there, we continued our strenuous workout by driving down to the trendy Mill District and eating lunch at one of our favorite restaurants. I had wonderfully flaky fish and chips and a spicy Bloody Mary adorned with a nice, salty array of cocktail onions, green beans, and green olives. We have been on a quest to find a good garlic press for my kitchen, so after lunch we headed to a fancy kitchen gadget store on the West Side, which, of course, was closed. There was a children's store next door selling Erik-sized PJs for $30 and up, and we decided we weren't interested. After standing in the warm sun for a few minutes, she suggested going to the neighborhood tavern to watch some football and hang out for a while, as we weren't ready to go home. I grew up on the street where this establishment is located but would never normally dare to set foot inside. My memories of my childhood here in town include the news of a man being shot there once. As it turned out, we made ourselves at home laughing and having fun without any shots fired and only a few long stares in our direction. After some unsuccessful video poker playing, we were off to try the Golden Tee 2005 video game. I have always poked fun at the incredibly dorky types who play this game. Believe it or not, there are actually national Golden Tee tournaments. I have yet to see a woman playing this ridiculous game. For those of you not familiar with it, you begin by choosing a golf course from around the world to play. Of course, there is a constant electronic breeze blowing from various directions on the course that must be monitored at all times. You are required to forcefully thrust your palm along a large roller ball to strike your tiny dot of a golf ball on the screen. For some reason, this involves sticking your tongue out of one side of your mouth as far as it will go and kicking one of your legs backwards like a donkey. Why? Well, it's like the open-mouthed, carp-like face required to apply mascara. You can try not to do it, but it is dang near impossible. Lisa kept kicking the chair behind her and was visibly annoyed at the feng shui in this less than classy establishment. For the most part, I learn something every day, and Sunday I learned that when it comes to Golden Tee 2005, I suck eggs. I'll stick to pinball and Ms. Pac Man (more "classics"). Lisa felt quite good about herself, though, about the sound thrashing she gave me. Maybe next time I'll try exaggerating the leg movements.

Monday, September 18, 2006


Erik and I got our act together early this morning and drove to the new orthopedic center in town to see the orthotist about leg braces. At 8 a.m., we were the first patients of the day, and when we located the little office upstairs in this massive, new building, the orthotist was just unlocking the door. He invited us in to fill out a form and took us into an exam room. He was probably around my age and made us feel comfortable fairly quickly, even though it was obvious not many children frequent the place. He got out a collection of light blue, footprint-shaped cups and had me take Erik's shoes and socks off. He found a pair that fit Erik nicely but would still allow his feet to grow. Next, we pushed Erik's pants legs up, and he wrapped one of Erik's lower legs with strips of a casting material that hardened over a stretchy tube protecting Erik's skin. He placed some surgical tubing down Erik's leg before he started this process that I held in place. When the cast hardened, he pulled the tubing out and had a place to insert shears and cut the cast apart. Well, in theory, this was how it was supposed to work. He got the scissors down most of the cast, successfully cutting through it, but at the top of the foot, he was pressing pretty firmly on Erik with the shears, and Erik's bottom lip began to stick out and quiver. He next mentioned the dreaded power saw. I gave him a crash course on Williams syndrome and explained that Erik does not do well with loud noise. I requested he avoid the saw if at all possible. Finally, after he struggled with the shears and was obviously hurting Erik, I told him to go ahead. He plugged the saw into the wall and cut through the remaining cast while I covered Erik's ears. Erik immediately started trembling and screaming like we were cutting right into him, tears squirting from his eyes. Once the cast was removed, the orthotist chose a softer casting material for the opposite leg that would not require the saw. By that time, Erik was pretty much in tears for the remainder of the visit, saw or no saw. We looked through a collection of colored Velcro and pads for the brace (I picked black for both) and then colorful designs for the straps (I picked trucks and construction equipment).

Since the orthotist told me he has yet to obtain the special plastic required to make children's orthotics, he has to send them out, which takes a couple additional weeks. We will likely wait three to six weeks to receive the braces. He did note that Erik walked on his toes and asked me if he tripped frequently, which he does. Since the medical offices in town are not far from our house and the office was so efficient, I was home with Erik in less than an hour, even though it was really hard to hold my screaming boy for even a short time. I gave Erik some crackers, peanut butter, and some cold milk and water, and he is lounging in his crib listening to a CD. I am praying that these braces will correct the problem with Erik's gait and not create any new ones with pressure points or muscle tone.

I am going to check on my little man now and see if he is awake enough for a ride to yet more medical offices to pick up my work for the day. Poor baby.

Friday, September 15, 2006

The "R" Word

I am having yet another bout of insomnia. Gracie woke me up again with her bloody meowing, and I tried for over 30 minutes to return to sleep, knowing it was hopeless but trying to think positive. Once I got the cat calmed down and sleeping next to me, I gave up.

Yesterday was a chilly day. The snow level was supposed to drop to 4500 feet last night, and I wonder if there will be snow on the mountains when the sun rises. Yesterday afternoon when I drove by the park, the sky was sagging with strange, electric-appearing, blue-gray clouds. This beautiful color reminded me of the tip of a Crayola crayon in the deluxe box (the one with the sharpener) from long ago. The park was a brilliant, emerald green in contrast to the sky with a wide swath of lazy silver river meandering through it. I felt sad because I know that things don't get any greener around here, and the summer has reached its apex before the descent into freezing nights that turn everything sickly yellow again. When we got home, the deer-ravaged day lily in the yard that was a recent gift had a brand new trumpet-shaped bloom on it, its hue a cross between tangerines and shrimp, virtually glowing under the icy sky. It was beyond beautiful.

I watched the Ellen show yesterday, and there was a young man being interviewed who had been blind since birth. He had perfected his own system of using clicking sounds in order to determine where objects were when he was out walking on his own. When Ellen asked his mother how she raised such a delightful, positive boy, she explained she told him he could do anything he wanted to and never treated him any differently. When he would stand at the window at home, she would ask him what he saw outside. She never, ever used the word "blind." This seemed ridiculous to me, because he couldn't see his hand in front of his face, yet at the same time I completely understood where she was coming from. I talked yesterday with my new friend who just received the diagnosis of Phelan-McDermid syndrome in her daughter, and we talked about the "R" word. I feel torn about using such a word to explain Erik's condition. Not using it doesn't make the problem go away, yet using it is painful and induces guilt because it seems to put a limit on our children. Maybe we associate that particular word with hurtful things that were said in school or feel guilty for using the word casually ourselves. I hear it said by others as slang in conversation and on television and radio in a pop culture context constantly. I'm honestly not sure how I feel about that. I have used this word in the last six months maybe twice, but I found a perfect spot for it in the front of a creaky file cabinet drawer in a cobweb-strung corner of my brain. Is this a sign I'm in denial? No. I have tackled what WS means head-on, for the most part, in the past six months. Because I listen to medical jargon for much of my day, I occasionally get that word out to help other people understand what WS might mean to our family in a clinical sense without much trouble. After that, though, it goes back in the cabinet. It was hard to say at first. It helps that it was one of the very first words the geneticist matter-of-factly and brutally blurted out when he presented us with Erik's diagnosis. The more I think about that day, the angrier I feel. As I remember it, he explained WS as pretty much purely mental retardation and simply gave us a scale of where Erik would be in comparison to typical kids and kids with Down syndrome. Perhaps there was more said about other aspects of WS, but I didn't hear anything but that ugly word. In any case, it's all I remember him saying to us that day, and the whole assessment seemed to take less than a few minutes to complete before we were sent on our way to deal with the nuclear warhead he just dropped on our lives and he went off to have a sandwich and see his next patients. The word seemed obscene that day but now seems like just a medical word to me anymore. Out of respect, I no longer use it in casual conversation as slang or in a medical sense around other moms in my situation unless they say it first. I also realize that when it is used as slang, it is not used to cause me pain. I see my friends flinch after they accidentally use the word around me, and it makes me uncomfortable when they apologize for it.

As Erik ages, the "R" word will probably come out less and less often as the people around me know what WS means and it is not often necessary to explain things. Unlike the geneticist, it is far from the only word I use to describe WS. Erik, of course, will never hear me say it. It's funny how I can equate it with his condition but don't really apply it to Erik himself. Maybe that's why I don't have too much trouble with it. One thing that really struck me about this mother on television was the fact she said that when she needed to cry, she went into her bedroom and closed her door so her son wouldn't witness it. I'm not certain I ever want Erik to see my writings here for the same reason. I will probably pull the plug on this blog eventually and file a hard copy away somewhere secure. I wouldn't want him to misinterpret my words and think he wasn't wanted or that he himself has caused me any pain. Neither of those things is true. I am just sorting things out as I go and hopefully can help somebody else in the process. Frankly, after seeing that show yesterday, it was nice to know that other mothers cry sometimes just like me about the tragedy of their child's condition and at the same time love them more than life herself.

I was invited to my cousin's son's 1st birthday party this weekend. I have decided not to attend. I have not met this child yet, but I can't bring myself to introduce yet another baby into my life right now. I feel horribly guilty about it. However, the thought of forcing myself to go practically gives me hives. I actually woke up thinking about it the other day. It is torture for me to see what could have been for us in the form of a lively, babbling, coordinated baby. Harsh, I know, but that's a fact right now. That is what bothers me the most about this whole thing and actually sparks a little anger in me. Erik is and has been different from day one, and I am contentedly oblivious to that fact until I see someone else's child and my wounds are ripped open yet again for no good reason. I just hate what my brain and heart do when I see other kids. There has been no greater pain for me in my lifetime, and I wonder if that pain will ever subside. One day at a time. One baby at a time.

I hope today is a little better for me emotionally. As I noted how beautiful the park was yesterday, I was simultaneously fantasizing about systemically swerving to strike cone-licking pedestrians, one after the other.

My friend Shaena sent this to me, and it seems like a good thing to do as I wait for the sun to come up. Fill it out and e-mail it back to me if you have insomnia, too.


1. MIDDLE NAME? Ask me in person.

2. WERE YOU NAMED AFTER ANYONE? I believe my mother named me after a television show she saw at the hospital. (See:

3. WHEN DID YOU LAST CRY? Yesterday. I don't cry every day anymore. Yay for me.

4. DO YOU LIKE YOUR HANDWRITING? Thanks to my job filling out photo orders at the drugstore years ago, I can only print in capital, block letters now kind of like a serial killer.

5. WHAT IS YOUR FAVORITE LUNCH MEAT? Turkey (so sleepy...).

6. KIDS? My hilarious, wonderful son.


8. DO YOU HAVE A JOURNAL? For all to see. It would probably be easier to get a web cam and take off all of my clothes, but I should have started that 20 years ago.

9. DO YOU USE SARCASM A LOT? Of course not.


11. WOULD YOU BUNGEE JUMP? Sure. You go first.

12. WHAT IS YOUR FAVORITE CEREAL? Frosted shredded wheat. It's the perfect kids' cereal for old people.

13. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? Depends on how quickly I am trying to do it or how tired I am.

14. DO YOU THINK YOU ARE STRONG? I can lift heavy things on command, if that's what you mean.

15. WHAT IS YOUR FAVORITE ICE CREAM FLAVOR? Brown Cow by Lucerne in the 1970s (root beer and vanilla). I miss it.

16. SHOE SIZE? 9.5-10 left and 9 right since I carried a human being in me for over 9 months. The rest of the swelling subsided.

17. RED OR PINK? Pink.

18. WHAT IS THE LEAST FAVORITE THING YOU LIKE ABOUT YOURSELF? I care about what people think too much and would like more confidence. Having a child is changing that daily, though.

19. WHO DO YOU MISS THE MOST? My grandfather. I wish he could have met my son.

20. DO YOU WANT EVERYONE TO SEND THIS BACK TO YOU? Sure, but hopefully they are asleep at the moment.

21. WHAT COLOR PANTS AND SHOES ARE YOU WEARING? Too early for normal clothing. Purple fuzzy socks, pink nightie, fuzzy blue bathrobe, and bed head.

22. LAST THING YOU ATE? Chocolate chip Slim Fast meal bar (16 pounds and counting).



25. FAVORITE SMELL? Wet sagebrush, Yankee Home Sweet Home candles, and various cleaning products (sometimes at the same time -- love to clean on rainy days).

26. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? Andy (I'm sorry I started laughing when you told me about your bad day).



29. FAVORITE DRINK? Margarita on the rocks with salt or A&W root beer.

30. FAVORITE SPORT? I love watching football.

31. EYE COLOR? Gray.

32. HAT SIZE? I have never been a hat wearer, but I imagine my head is as Amazonian as the rest of me.


34. FAVORITE FOOD? Maui zaui pizza with Polynesian sauce from Round Table, shellfish, griddled items, white chocolate...I could go on forever, but I'm tired.

35. SCARY MOVIES OR HAPPY ENDING? I like both, but it depends on my mood. These days I only allow myself to watch Chris Farley movies in a continuous loop. I am tired of being sad.

36. LAST MOVIE YOU WATCHED AT THE MOVIES? Uh...I honestly don't remember. It has been probably over a year.

37. WHAT COLOR SHIRT ARE YOU WEARING? I think we established that earlier.

38. FAVORITE SEASON: SUMMER OR WINTER? Winter...although now that Erik is in my life, I enjoy being outside during the summer with him. It's like discovering things all over again.

39. HUGS OR KISSES? Depends on who's offering.

40. FAVORITE DESSERT? Oh here we go again. Rhubarb custard pie (mom's), ice cream, cold vanilla pudding, flan, root beer floats...OHHHHH carpal tunnel! Stop with the food questions!



43. WHAT BOOKS ARE YOU READING? The Ted Bundy interviews, which I received for my birthday. I have a gripping book on cadavers next in the queue.

44. WHAT'S ON YOUR MOUSE PAD? It's Brian's old desk and mouse pad, so some company name I am unfamiliar with. Probably a very manly company selling wire, pipe, steel, or dirty magazines.


47. ROLLING STONE OR BEATLES? Both. I prefer Van Halen, though. Don't ask me to choose between David Lee Roth and Sammy.


49. WHAT'S YOUR SPECIAL TALENT? Making my friends squirt the beverages they are drinking out their noses by telling jokes.

50. WHEN AND WHERE WERE YOU BORN? I'm so old, I don't remember.


Life is not measured by the number of breaths we
take, but by the moments that take our breath away.

Wednesday, September 13, 2006

Mission Accomplished

Erik's group therapy session went swimmingly yesterday. I walked him up to his classroom and got him comfortable in the indoor swing before I left. I spent some time reading the paper, drinking coffee, and watching television at my folks' house to kill some time. When my dad got home, I helped him take out the giant front storm window to clean. I drove back down to pick Erik up an hour later. He was eating a gluten-free brownie and seemed to be enjoying himself in his quiet Erik world. I sat on the floor with the group at closing circle and fell in love with a brand new batch of kids. I was also lucky enough to talk to another mother I know from the "outside world" -- the wife of one of my brother's good friends. I didn't ask her about her son, but the last I heard, he tested negative for Williams even though he had some of the characteristics. After class, I took Erik back to my parents' house for a nap, but Erik fell asleep too late and got about 15 minutes before we had to turn around yet again and go back to his school. We gave him a very quick PB&J sandwich before we left and a glass of cold milk. When my mom asked Erik if his milk was cold, he smiled big, shivered, and made a little noise like he was freezing (OOHHHHHHHHHHHRRRBBB), making us laugh. When we arrived at the school, we went back into his classroom to meet the speech therapist, occupational therapist, physical therapist, and Bev, our early intervention specialist. We had to complete a lengthy assessment by answering questions about Erik's abilities. The last time we did this was a mere six months ago before he "woke up." I don't have better words to describe what he was like. He was not walking, playing with toys like a typical child, talking, or moving around much. We determined that he easily surpassed most of the goals we set back then. We set new goals for language (using pivotal words like "more" in addition to the words he uses now like "milk") and communication. When we got to the physical part of the assessment, braces were again suggested for Erik's lower extremities. After observing Erik, it was decided that supramalleolar orthotics would not be as effective as bilateral jointed ankle-foot orthotics (AFOs). Unfortunately, this means the braces will go up to under his knee. Seemingly right on cue, a very friendly mother accidentally turned into our classroom and interrupted our meeting. She was carrying a little boy wearing AFOs. He was wearing shorts, so they were visible and we could touch them. Two things struck me that made this new information a little more palatable and less shocking. (1) They appear much less awful than the ones in the past did, as they are made of a plastic compound. (2) They had a cheerful pattern on them with cars all over them, which immediately reminded me of Daven's back brace (see link to right). It is nice not feeling singled out anymore, knowing Erik and Daven might end up matching! They also gave us an angled, carpeted board to have Erik stand on and stretch out his Achilles tendons. So far, Gracie kitty thinks it is a scratching post, but at least her heel cords are stretched now, too. We will have to keep that in the closet.

Overall, things went well, and the panel was very kind. They obviously love Erik, and the feeling seems to be quite mutual. His power nap perked him up, and he smiled, demonstrated his mastery of language and animal sounds, waved, and turned on the charm full bore yet again, making everyone in the room laugh. His sense of humor was even mentioned during the assessment, and I couldn't help but feel proud. He is really learning how to work a room like any seasoned comedian.

It was an exhausting day. When I got home, I began throwing dinner in the Crock Pot on my way up the stairs to work while Erik napped but decided I had no desire or energy left to cook -- or work, for that matter. Luckily, it was a slow day, and there was no work for me. When Brian arrived home a little early, I suggested we all go out to dinner after Erik's nap. We loaded in the car and were on the way to the restaurant when Erik dropped his toy and said, "UH OH." That's new! We practiced that phrase a lot more throughout the evening, since we got to throw peanut shells on the floor at the restaurant. I ditched my new diet for an evening and had pizza and my favorite deep-fried won ton appetizer. Erik shared my Canadian bacon and pineapple pizza and consumed an entire dinner roll, much to his father's surprise (they were part of Brian's dinner). He sat in an uncomfortable, wooden high chair for the entire outing without one complaint, and we had a wonderful evening out.

Our next step is to call our insurance company and determine if they will pay for Erik's braces, which cost thousands of dollars for some reason. If they fail us, we might go up to the Shriners Hospital and get Erik casted there.

Tuesday, September 12, 2006

Day From Hades

For once in my life I have someone who needs me
Someone I've needed so long
For once, unafraid, I can go where life leads me
And somehow I know I'll be strong

-- "For Once In My Life" (Stevie Wonder)

Today is Erik's IFSP meeting. It is going to be a wild day. Erik goes to group therapy at 8:30. I will drop him off and camp out at my parents' house on that side of town until it's time to pick him up at 10:00, bring him back to my parents' house to try to get him to sleep for an hour or so, and then bring him back to the facility at 12:30 for the IFSP. Hopefully, he will be exhausted and nap again when we get home so I can cram work into my day somewhere. I see a giant glass of cheap red wine in my future.

My stomach kind of feels like a fish bowl with a handful of guppies swirling around in it today. I know basically what to expect at the meeting. Like I said before, I am not fond of panels of any sort. Frankly, they make me feel defensive and a little like I am a contestant on American Idol. We will most undoubtedly discuss Erik's walking and orthotics. I can't help but think of that Simpsons episode where Bart was forced to wear those awful, thick glasses, some sort of salve for his scalp that made his hair greasy and flat, and platform orthopedic shoes. He left the doctor's office looking like a nerdy, palsied Buddy Holly. Terrible, I know. I think glasses are next for Erik, because without my glasses or contacts, I slam into as many walls as he does, and he has probably at least close to half of my chromosomes/genes, which means he probably inherited my eyes. I was in a very expensive antique store this weekend with narrow aisles and couldn't help but think it was a good thing Erik wasn't with me on that particular outing. At least Erik's hair is fluffy now. In the old days, with his cradle cap and eczema, I actually poured olive oil on his head to loosen up the flakes on his scalp. He smelled a little like a bread stick at the Olive Garden but didn't seem to mind.

I am anxious because I want the absolute best for my son and know this is the right thing to be doing with him. The people we will meet with today seem to have a genuine desire to help the kids they work with. Hopefully, they can point us in the right direction and give us the tools to help Erik succeed. I am discouraged about his balance and walking and hope they can help with those things.

Monday, September 11, 2006


In September 2001, Brian and I had been married for a little over four months and had returned from our honeymoon in Mexico and Catalina earlier in the year. I remember trying to get my name changed as soon as possible on my passport before we went on our cruise. Even before terrorists attacked this country and effected strict travel and security restrictions, when I traveled alone in the past, I discovered I was often a favorite target of humorless, power-tripping customs and security officials. I was subjected to having my luggage opened and my delicates spread out on a table for the world to see. Every item in my suitcase was scrutinized. When I requested that innocent but suddenly questionable items, like novelty bottle openers and goose liver paté, be deposited in the trash can so I could be free and catch my next flight, these men insisted I keep them and continued to interrogate me. Sometimes even my carry on was searched without warning at airport gates when the people around me seemed to pass right through. When I was actually singled out and pulled from a line of people without warning, I was asked why I was going home on a certain date. I was asked what my business was in another country. On one occasion, I was loudly ordered to stop so dogs could sniff my bags for contraband (For what? Cocaine? Heroin? Exotic birds crammed in my makeup bag?). There was the time I was searched three times on one flight home. I feared that if things got any worse, I would find myself the subject of a vigorous cavity search in a smoky back room of a foreign airport. On our honeymoon, however, I was looking forward to traveling with my husband and looking a little less like a drug mule and more like a boring tourist. Cloaking myself in a new name gave me an added sense of security in the event my maiden name had been a cause of my previous travel woes. Unfortunately, I applied for my name change in 2001 too late. The whole process was more of a hassle than I had anticipated and would have only resulted in an addendum to my existing passport, so I decided to forego it, knowing my physical appearance as a single female traveling outside the country was probably the single root of suspicion on my prior journeys. On the cruise ship at the end of our travels, our cruise director briefed us on how to get off the ship. He told everyone that if you heard your name announced, you were in “big trouble.” Everyone laughed, including me, and I told my husband not to be surprised if it happened to me. As things turned out, the day we were scheduled to leave, we were quietly packing things up when I heard my name announced over the loudspeaker for every passenger to hear. It was nestled in a list of foreign-sounding names. I couldn’t believe it! I suddenly found myself sequestered from the rest of my pleasant, geriatric, clam digger-wearing, pleasure-seeking fellow travelers in the midst of a group of foreign men. I don’t recall any other women present in this group of detainees at all. I was gruffly ordered to sit and wait. After being at the mercy of some very rude customs officers asking me mysterious questions about my hair and eye color and what I was doing on my travels, I was allowed to leave without an apology or the courtesy of an explanation. By now, I knew the drill, although I was more nervous than annoyed. My travel troubles had never gone quite this far. After I was released, I perfected my best innocent but slightly annoyed look before disembarking the ship. Amazingly, I actually made it past the customs gate on shore without incident.

Sadly, little did I know that a few short months later there would be more sinister men easily gaining access to passenger airplanes who would change our lives and travel forever. I ended up being very thankful that we had married and honeymooned when we did.

On September 11, 2001, I got out of bed and showered before work. Since I was interim supervisor for our department, a position I loathed, I had a supervisors’ meeting early in the day. I was in absolutely no hurry to climb into my truck and head off to work. I lounged in my bathrobe on the couch and had some coffee. Brian was still sound asleep upstairs. Flipping through the channels on television, I stopped on a Bloussant breast enhancement infomercial. I have absolutely no desire or need for this ridiculous product, but for some reason I watched this advertisement for a good 20 minutes in a sleepy haze while the first plane was slamming into the World Trade Center. When I came to the realization I was being mindlessly drawn into some extremely effective advertising, I flipped over to one of the major networks and saw footage of what had just happened. My mind very roughly switched gears while it tried to make sense of what I was witnessing. The plane looked tiny to me against the massive skyscrapers, and I told myself it must have been a small, private plane in a horrible accident. At the time, I had recently heard of a man crashing a Cessna into a building somewhere in Florida. I had no idea how big this particular plane actually was or that it was full of innocent people. Even so, I was shocked to see a puncture wound in this beautiful, familiar building and screamed up to Brian, who quickly came down to watch with me. Over the course of the morning we watched the awful drama in New York unfold as I reluctantly got ready for work with one eye on the television. We watched the fiery orange blossom swell out of the second tower and debris raining down from the sky on the people below. I finally retreated into the bathroom and had my hair dryer on full blast when Brian knocked firmly on the door and informed me the Pentagon had been hit. I remember looking at him and saying, “Who is doing this?” By the time I was in the truck headed to work that gorgeous, crisp morning, I was listening to a man who had called in to our local radio station and was telling the morning crew DJs about a loved one who was a flight attendant in New York that day. He could not reach her by telephone, and the DJs were telling him she was probably fine. He kept sobbing on the air. There were then reports of additional planes that were unaccounted for and had possibly been hijacked. When I got to work, I sat around a table in the conference room with people I normally couldn’t stand the sight of, yet I felt a weird sense of connection with them as we all tried to sort out what was happening. By then, all four hijacked planes had met their fiery demise. It was announced the clinic would close its doors early, and we ended up going home a couple hours later. I was confident that with that many people in the area hit in New York City, there would be many survivors recovered daily for the next few days. I saw it happen in Oklahoma City and had faith it would happen again. It didn’t. Many of the bodies had been incinerated and were merely unidentifiable gray ash. Being a news junkie, our television was on constantly. I remember how eerie it was looking up at the perfectly blue sky with no vapor trails criss-crossing it or the sound of airplanes at all for three days. It was hauntingly, apocalyptically peaceful.

Strangely, it took a full a week or two later for the reality of what had happened to hit me emotionally. I remember standing in front of my closet hanging up some clean shirts when I suddenly burst into tears without warning. After days of watching with grisly fascination, it had finally hit home. I thought of the families that had been destroyed and the people I watched jump to their deaths from their burning offices for all to see on national television. They were people who went to their offices just like I did that day. It was so horrible that it took days for my brain to finally wrap around the magnitude of it all.

Since then, I have been amazed at how this country pulled together to start healing from such a massive wound. The first time I attended a football game after that horrible day, I cried when I heard the national anthem. Everybody in the stands cheered so loudly that it gave me goosebumps. The words to this song, although they written almost 200 years ago, are surprisingly timeless. Brian and I attended a multi-faith memorial service on September 11, 2002, at our local hospital on our lunch hour and sang hymns, held hands, and prayed surrounded by soft lighting and candles. We also sang "America The Beautiful." There were speakers who were Presbyterian like me and many others, including people of Catholic, Native American, Jewish, Hindu, and Muslim faiths. It was an incredible experience.

What happened in 2001 was undeniably horrible on an incredibly large scale in a brand new setting, but, unfortunately, what was behind this act is nothing new. A lot of what has happened over the course of the history of the world I find equally repugnant. There have been countless mass murders of innocent people and thousands of gallons of blood shed throughout the centuries all over the world, the sting of which seems to fade in the collective consciousness to seep into dusty textbooks -- until the next time we are reminded that darkness is still very much in our midst. Evil is timeless, too.

I take comfort in the fact that when evil shows itself, there is an opposite force of goodness readily apparent that seems to overpower it. There are people who drop what they are doing and rush to help, sometimes giving their own lives in the process. There are some amazing stories of heroism and survival that were written that day in the ash and dust. I will never forget that day.

I don’t have the desire to travel like I once did. I have a better understanding of how precious life is because of September 11th. For some people, that knowledge drives them to accomplish all they can before it’s over, seeking thrills or traveling to new and exciting places full of strangers. For me, the knowledge that every day is a gift makes my desire to cultivate what I have here at home with the people in my life a top priority.


Friday, September 08, 2006

Brace Yourself

Erik had a home visit from Bev, his therapist, yesterday. I ran him through all of his new tricks for her to show off his progress, and I actually look forward to her coming. She tried to write down all of his spontaneous words but didn't begin to get them all. He turned on the charm factory and made her giggle throughout the visit. I do love the fact that my kid is so delightful to be around that people want to take him home.

Our IFSP is Tuesday after his group session. Bev briefed me on what will take place and said she suspects one of the physical therapists will suggest we put Erik in SMOs (supramalleolar orthotics). These are braces that fit over Erik's feet and ankles to keep his feet flat. I mentioned earlier that Erik's walking has worsened. It was noted this week that his heel cords are very tight. Being in the medical field, I know that this can be a surgical problem later if it isn't corrected. I don't want Erik to have the tightness and contractures that go with WS and am ready to start the fight to keep his body loose and pliable. Bev marveled at how tall Erik is getting and wondered if that was throwing him off and up onto his toes when he walks. His balance is also very shaky, and we will probably set some goals regarding that as well. His social and language skills are seemingly right on target now.

I love iTunes! I highly recommend my new favorite song at maximum volume...

Collective Soul - Better Now

Oh I'm newly calibrated
All shiny and clean
I'm your recent adaptation
Time to redefine me

Let the word out I've got to get out
Oh I'm feeling better now
Break the news out I've got to get out
Oh I'm feeling better now

Oh I'm happy as Christmas
All wrapped to be seen
I'm your recent acquisition
Time to celebrate me

Let the word out I've got to get out
Oh I'm feeling better now
Break the news out I've got to get out
Oh I'm feeling better now

The world's done shaking
The world's done shaking
The world's done shaking me down

The world's done shaking
The world's done shaking
The world's done shaking me down

Thursday, September 07, 2006

Sitting Fee

Erik and I drove to Sears yesterday to get his yearly photos taken. It was really an ideal situation, as the store opened at 10 a.m., and our appointment was at the same time. Therefore, there were no screaming kids to upset Erik. I thought we had it made! Since we arrived a few minutes early, I put Erik in his stroller and took him on a tour of the construction site behind the mall. There was an excavator at work biting into big piles of dusty earth that Erik watched intently for a while before we went inside. I reckon those construction workers rarely have women stop and watch them! I didn't wolf whistle at them, though. I have been to Sears once before to get Erik's photos taken, and it was a bit of a nightmare with major computer problems and a double-booked appointment, but they did a great job last year. The same girls were behind the counter this time, which was a plus.

First of all, it was 5000 degrees in the room we were directed to. I had sweat pouring down my back into my jeans as I tried to get Erik to stay against the backdrop. The scenario was instantly very upsetting to him. He would turn red, squeeze his eyes shut, and go into a silent cry. Since his eye drains are still clogged, tears actually squirt out of his eyes all over the place like a little cartoon boy. The photographer and I worked very hard to get the shots we did. That girl was good. She saw that he was upset by a toy that made some noise and didn't try anything like that again. Erik was desperate to get to the wheels on his stroller and wanted no part of the photo session. The photographer said, "Um...boy, he sure does like those wheels," and then quite some time after most kids would have moved on to something different, " sure is unusual he likes them that much..." I think she was sensing there was a little bit of different going on. I just smiled knowingly and put him back in front of the camera.

After the session, we waited for our photo CD in the lobby, and Erik continued to play with the stroller wheels for another 20 minutes without stopping. When we were finished, I gave him a string cheese and we headed home so I could self-medicate with a gallon of Diet Pepsi and leftover coffee to get through an afternoon of work without passing out from pure exhaustion. I said it last year, and I'll say it again: Next year will be more fun for both of us! In the meantime, we have some beautiful photos to enjoy.

Wednesday, September 06, 2006

"Perfect" Couple

Somebody put me out of my misery. The cat woke us up at 2:30 a.m., and now I can't get back to sleep. That is one of my many major flaws -- I can initially fall asleep, but once I'm awake, I'm usually awake for good.

Last night I made my husband laugh. Not the obligatory, polite laugh I get a lot when I tell painfully bad jokes, but a really healthy belly laugh. It was such a wonderful sound that reminded me of the old days. It made me a little sad, too, because I realized how long it had been since I had heard him really laugh. Overall, I have promised to try not to speak for him here. He has his own quiet way of processing things, and I have learned that I need to leave him alone sometimes when there is something to be decided or pondered. It may take five minutes or ten years, but there is usually nothing I can say or do to speed the process along. I know that in general men feel helpless when they can't fix women's problems, but it goes both ways, too. I wish I could do more for Brian during this challenging time, but sometimes there is simply nothing I can do for him but wait and try to make him laugh in the meantime. For the most part, I don't feel like I have really succeeded lately. That's really tough for me.

When I was pregnant with Erik and we had just settled into our house, it wasn't long before a stray cat delivered kittens in our bathroom wall. I was going to bed one evening and heard mewing. Brian was soon thereafter perched on a ladder outside in the dark cutting into our new home to free them right away for me, as we had previously sealed up the holes in the house and the mother cat could not reach her babies to feed them. He pulled each one out, holding them safely against his flannel shirt on the way down the ladder as I watched out the window. Over the next few days at work I searched for adoptive parents and ended up having some gals come out to the house to take them home once I had successfully gotten the kittens on solid food. One of these ladies, whom I had never met, kept very obviously staring at us both the entire time she was here. On her way out the door, she finally said, "I just have to say something. This is going to sound really weird, but you guys seem like the perfect couple to me." She was honestly kind of weirded out by us, but in a very good way. I think BOTH Brian and I were glowing and happy during that time. Everything seemed to be falling precisely into its place back then, and the world could see it. I don't know if we will ever get that exact vibe back, as it was a more innocent time for us that is forever gone. However, when I think about it, things weren't perfect by any means back then, either. I am fairly certain we are on our way to peace and happiness again with a new idea of what perfect means to us as a couple and as a family. Time will tell.

Erik had group therapy yesterday. They changed the time to earlier in the morning, so I had to drop him off, kill time across town, and pick him up. Double fun for me. I spent probably a half hour observing him during his session. He seemed more determined to make it up the hall quickly to his classroom and immediately made himself at home with toys when we arrived. He did not cling to me at all. I decided to make a run over to Target to finally return Erik's hideously loud magnetic drawing set and a soft, pink bathrobe I purchased that instantly made me look like Bea Arthur. When I returned to the school, the kids were out on the playground. They were climbing on the equipment and having a great time. I scanned the scene for my son and then spotted him off by himself under the supervision of a therapist playing with the river rocks (does everybody around here landscape with those?). I spied on him from a window in the classroom for a while but finally made my way out to the playground to say hello. He took a break from his geologic studies and ran up and down the uneven, grassy hill a few times without any trouble. He loves to run. The fact that he was not slumped over in a corner expressionless and drooling cheered me immensely. The kids then gathered inside for a snack, and I found a stool in the corner away from the chaos. Each time I glanced Erik sitting in his little wooden chair at the table, he had a piece of food firmly in his grasp and was surveying the other kids surrounding him. He does not usually eat, as far as I can tell, during snack time at group. There is just too much going on. The first time I looked over at him, he was holding up a tiny fork with a juicy piece of watermelon on it. The second time I caught a glimpse of him, someone had kindly exchanged it for a cookie, and he had a death grip on the poor thing. It went nowhere near his mouth. In fact, in closing circle, he still had that cookie firmly in his grasp. I eventually pried it from him on our way out the door, and he ended up devouring it in the car in more quiet surroundings. On our way home, he yelled, "Buh bye! Buh bye!"

Being on the emotionally labile side yesterday, there were a few triggers that sent me into losing it, but overall I did fine. Just one good cry, and because of work I simply didn't have time to fall apart completely. I instead sent up an electronic smoke signal to my posse on line, and they let me vent and made me smile. Thanks, girls.

This morning was supposed to be my fun time. Erik and I have an appointment at Sears for his yearly photo session, but I fear I will have to pump myself full of coffee to stay awake. Last year Erik smiled a total of three times, and we had to make complete jackasses of ourselves to get him to do it, much to the amusement of the folks in the waiting area. Luckily, the photographer was talented and quick on the draw. This year should be easier and much more fun for me and Erik. I will post photos as soon as I can.

Monday, September 04, 2006

Some Mothers Get Something More

by Lori Borgman
Author of I Was a Better Mother Before I Had Kids

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want it to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants. Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing, it's a wondrous thing. They appear as specimens without flaw -- muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church and my sister-in-law. You're a wonder.

Saturday, September 02, 2006

Slippery When Turn Left

I suppose I should watch what I wish for. In my last post, I was feeling disconnected from our therapists and physicians. Since I wrote that, I was informed that Erik's group sessions start up again on Tuesday mornings, he has a home therapy visit scheduled Thursday, and his IFSP (Individualized Family Service Plan), which will be accomplished every six months, takes place next Tuesday. The IFSP basically entails a panel of people evaluating Erik and his needs/goals. I have never felt good about panels of people. They remind me of flute recitals and job interviews. I probably sound like I'm whining, but it is really hard to see my sweet boy evaluated so clinically and objectively. I am still getting past feeling defensive and overly protective as a parent in this setting as they ask me questions about how I play with and interact with Erik. We have only done this once thus far, so I am still adjusting to the concept. It is a very odd feeling, as I never expected my parenting to be analyzed in any setting! I am very thankful we live in a smaller town and the facility is small and fairly friendly.

Friday I couldn't get away for lunch but opted instead to end a little earlier so my neighbor could swing by and pick me up for dinner and drinks. We drove downtown and checked out a very expensive art gallery before making ourselves comfortable in a dark, retro/trendy bar to chat. I have had it up to my eyeballs with trendy, growing up in a tourist town, but I did enjoy the retro feel of the place with its burlesque-flavored paintings and leopard-print chairs. They featured a menu of foo-foo specialty martinis, the thought of which made my stomach turn. I opted for a small whiskey on the rocks. After that, we walked to a more familiar, relaxed joint to play some video poker/slots (I lost $2) and then to check out a new dance/live poker club that opened recently. We got a table with a nice view of the river and great people watching inside, but it took so long for our drinks to arrive, we left and headed to a nice, quiet Italian restaurant for a long, leisurely dinner. I absolutely love ravioli, and we shared a plate of mussel-stuffed mushrooms that were to die for. The evening ended fairly early just as the beautiful people were coming out in their club-hopping finery. On the way home in Lisa's brand new SUV, she had the new-fangled navigation system AND her favorite Bon Jovi CD blasting simultaneously, which I found more than amusing. It went something like this:

STEREO SYSTEM: Tommy got his six string in hock -- Now he's holding in what he used to make it talk - So tough, it's tough. Gina dreams of running away - When she cries in the night, Tommy whispers: Baby, it's okayyyyyy...



STEREO SYSTEM: OHHHH OHHHH! We're half way there - Livin' on a prayer! WE'RE HALF WAY THERRRRRRE!



I almost wet myself, and because Lisa didn't seem to notice my reaction and kept screaming at the obnoxiously flashing, ridiculously feature-laden console, I laughed even harder. Overall, it was a relaxing evening, and I always enjoy Lisa's company. We live next door to each other but don't see each other very much. We watch each other's activities and call if we are feeling especially nosy about what is going on at the opposite house or want to speculate about the goings on at the houses around us. They have a sputtering golf cart in various states of disrepair they ride down sometimes, shuttle me back home from a visit to their house, or intercept me to give me a free ride to the mailbox, even though it is a 3-minute walk. Max, their little wiener dog, usually sits on my lap with his long ears flying behind him, calm as can be. I'm sure if you looked close enough at the upholstery, you would see my fingernail marks from where I last held on for dear life. Personally, I find the golf cart ride a bit terrifying. Who knew they could go that fast over rocky terrain? They never go that speed on the golf courses around here. Since the developers are progressively building up around us, we probably won't be here much longer, our houses will probably be demolished, and I will really miss this country life and the adventures of my wonderfully quirky neighbor.

In summary, I am happy I had a fabulous time last night and have a long weekend ahead of me to prepare for next week. I'm sure Erik will keep me smiling. Today he crawled up onto my lap, got right in my face, laughed, and said, "HI!" Life sure isn't easy, but nothing good ever is. I'm still feeling like a lucky girl.