Erik Quinn: The Heart of a Family: May 2007

Thursday, May 31, 2007


Summer is making itself known today. Erik's plastic-encased legs are sticking out of a new pair of shorts, my tan from a bottle is slowly tinting my Viking skin a faint, dirty tangerine color, and there is a roaring wildfire to the north emitting a choking, carbon-infused haze that permeates the horizon in every direction and adds sweeping Technicolor to the sunset like the end of an old spaghetti western. I just fastened the long cushions to the metal skeletons of our chaise lounges on the back porch and am attempting to cool the house down to a less than hellish temperature. Erik is technically supposed to be sleeping in bed with his stuffed puppies (Stinky & Dog), but instead I can hear him in his closet spinning one of his favorite toys. Brian drove off in his Jeep in his softball attire to play a game across town.

So here I am with a glass of red wine and my thoughts.

This week has been fairly calm, but looking ahead on the calendar, I see next week will be much different. Sunday Kathy and I are doing the local 5K breast cancer walk/run. Having successfully worked out for weeks now, my calves, thighs, and portions of my arms are beginning to bulge to proportions never seen on a human female before. I foolishly thought that perhaps I would become a slightly more slim version of my former self. Instead, I find I am only adding on to my already Amazonian stature, enlarging like a steroid-shooting member of the Super Friends. However, I digress. After the race, we plan on joining Kathy's family at a nearby lake for some rest and relaxation with the boys before a week that contains one salon appointment to rid myself of my split ends, an appointment in which we must hold our screaming child down to have his teeth lacquered, one session of pool therapy, our first transition meeting with a rather intimidating panel of professionals, and our neighbor's graduation party, which, while in the midst of some sort of fleeting manic, euphoric state, I agreed to help set up. In addition, I have to cram work in there somewhere.

Admittedly, however, the big day is Tuesday, which is Erik's end-of-the-year party for his early intervention program (EIP). This isn't our actual end yet, as Erik attends four more weeks of summer program. Then it's officially over for good, as Erik will turn 3 this fall and transition into "normal" preschool. In short, this means no more EIP.

I confess that I find myself more than a little sad about this. After all, EIP is where we began our journey, and I will never forget meeting the first members of "Team Erik." Frankly, I had no desire initially to meet any of them and bristled at the whole experience, thinking it was all temporary and that Erik would soon prove everybody wrong, including his pediatrician, but as I surrendered to the horrible permanency of our situation, I have grown to appreciate all of them and even feel love for some of them. I will soon no longer be required to pass by the little evaluation room on the way to Erik's classroom each week and feel my heart break a little bit every time. I have only been inside that room once on just one very horrible day. I can't stomach the sight of it with its child-sized wooden kitchenette and brightly-colored educational toys. Its cheery contents mask the absolute gut-wrenching heartbreak that is experienced inside. In rooms like these I now never fail to notice the very subtle but ominous presence of a single box of tissues ready to absorb grief. I see the table where Brian and I sat that very first day and the two-way mirror through which we were observed. Most weeks I pass by this room without turning my head, but when I accept an occasional self-imposed dare to glance that direction, my stomach lurches on my way by. Sometimes there are parents and a child casually playing on the floor inside, but mostly the place is deserted and quiet. I resist an occasional urge to stop and stare. It's crazy, but I am certain there is a piece of me still trapped in that room. I recognize it as ghostly vapor in my peripheral vision as I pass, but it vanishes when I turn to look at it. It is no longer mine. It is forever lost to me, doomed to haunt the place forever. Perhaps one day another mother will feel it pass by in the middle of shaking her head at the forms piling up in front of her like a paper snowdrift. Perhaps she will wonder at the sudden goosebumps on her skin and turn her head to smile at her child sitting on the floor staring blankly ahead for reasons about to be discovered as she begins a nightmare of her very own.

I now have four weeks of parent group remaining in the room just down the hall. In this particular room, we are on our second coffeemaker, and the chairs are almost always full. I have watched mothers and fathers come and go, most of whose names never sank into me somehow, and I sometimes briefly wonder what happened to them. As for me, I will soon be a memory here and will leave my wooden rocking chair for another mother with a newly jumbled heart to occupy. This fall when I enter the front door, I will turn to walk down a new, unexplored hallway to Erik's preschool classroom, but I will undoubtedly glance through this familiar doorway on my way by, too, remembering the first day I my feet took me into this room instead of straight out the front door to my car. I will always remember this room, but I will no longer be a member inside. The metal door will be closed tightly, and through the safety glass window I will glimpse another pale face silently floating over a cup of lukewarm coffee. Our eyes will meet, and I will turn to continue my way down the hallway into a brightly lit classroom filled with construction paper turkeys, long tables, and tiny chairs instead of therapeutic swings and exercise balls.

Thank God.

I will graduate right along with Erik this year.

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Monday, May 28, 2007

Goodbye Spring Slides & Video

Friday, May 25, 2007

Earth Angel

I had an amazing morning.

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

I soon found out why.

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

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

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

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

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

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Thursday, May 24, 2007

Bits N Pieces

I hope everyone has a fabulous weekend.

Me? I'm working. At least I have one BBQ to attend and got an invite up to a local lake for the day.

In Erik news: Erik asked the medical clinic staff how they were doing today. He greeted another 2-year-old boy there and followed that up with "Bye-bye" and then "See ya!" He said, "Hello, dog!" to a little terrier in the parking lot. For the grand finale when we got home, he put his yellow hardhat over his head and said, "Hello, Clarissssse" for Blake, the intern therapist at his home visit. She said, "What?" I asked her if she had ever seen Silence of the Lambs, put the hardhat over my face, and said it again. She laughed very hard and said, "Oh, I hope I never EVER forget that." She is falling deeply in love with Erik and must leave at the end of the summer back to her home in Portland. It's so much fun to watch Erik charm her.

I know I'm due to post updated photos, and I will take some at the BBQ. Erik has gotten so TALL. I know he is not supposed to, but it's happening anyway. It must be all of the cookies, cheese, and fruits he eats.

I have been a basket case lately with work and life, and today I took Erik on a quest to find lovely-smelling bath salts. I made it a requirement for today, even though I didn't have time. I bought one tub of manderin orange and one tub of almond-vanilla. They were $15 apiece, but I didn't care. The heck with it. I am taking a bath tonight. As an added bonus, my new exercise program has gone quite well. I have walked the equivalent of at least 27 miles this month thanks to my new DVDs, all without migraines. My hormones are due to take a dive in one week, and I'm anxious to see how I do. I just want to relax and not be in excruciating pain or some sort of twisted pre-pre-menopausal hell. Is that too much to ask? I'm also trying some new vitamins. So far, so good.

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Tuesday, May 22, 2007

Gracie Update

Poor Gracie-Cat. She dozed in a fat curl on the love seat this morning while I tortured myself doing an exercise video of almost purely squats. Brian even approached her, and she didn't open her eyes at all, although she was undoubtedly aware of his presence. She always knows when he is in the room. Seeing this, I was glad she would be going to the vet.

After my shower, I retrieved the plastic cat carrier from the attic. Upon glancing inside, I saw handfuls of cat fur from my neurotic kitten's last trip to the vet seven years ago. Luckily, Gracie's memories don't seem to include this particular item. She sniffed at it when I placed it beside her, and I was able to basically pour her into it without any trouble at all. I snapped the door shut and loaded her into the back of my Jeep. She read me the riot act the entire way to the vet, and I cranked up the stereo to nearly full blast as we headed down the parkway to muffle her yowling. Surprisingly, Steven Tyler and Gracie sound remarkably similar.

The animal hospital here is a small building nestled up against a car dealership one block off the main drag. Inside the front door was a window in which a young girl wearing medical scrubs sat looking pathologically bored. On either side of this window were waiting rooms lined with padded, brown, vinyl benches and racks of expensive pet food. The place hasn't been updated probably since 1970, and it felt dark and creepy inside. The wood paneling definitely didn't help. It reminded me of a cross between a ski lodge and a porn set. After I checked in, I chose the deserted waiting area to my right. The magazine rack held one worn copy of Working Mother. Gripping. I talked to Gracie's eyes, which were visible now, yellow and wide, behind the plastic cage of her pet carrier. Something about this place made me wish I had a gallon of hand sanitizer, although I did note that air fresheners have come a long way in seven years. The smell of sick, frightened animals was much less noticeable. A technician opened a door, interrupting my thoughts, and announced Gracie's name. I stood and hoisted the plastic box, hoping the cheap, aging handle would hold. We walked down a dingy hall into an examining room with a window overlooking the car lot.

The technician asked me to get Gracie out of her box, and I dragged her out by the scruff with no resistance whatsoever. I felt just dead cat weight. She sank and widened into a large black and white puddle on the examining table. I was instantly covered in her fur, and as her feline follicles released handfuls of her coat before my eyes, the air became saturated with floating fuzz. I was asked to hold her scruff while a stiff plastic spike on the end of a thermometer was inserted into her backside. Gracie stared blankly ahead, any fight in her long evaporated. The technician withdrew the spike and wiped it off with a paper towel. She asked me to deposit Gracie on the scale. It read: 15.15 lb. Holy Friskies, Batman.

The technician left us, and I leafed through an issue of Cat Fancy. I was immediately entranced by the velvety faces of strange looking, beautiful animals that likely cost as much as my vehicle sitting in the parking lot. As I flipped the page, I spotted a photo of a cat sporting a jaunty, red bandana triangle around its neck. My eyes rolled in an involuntary gesture as the door opened to reveal the doc. She was a very athletic blond with no visible trace of makeup. Her body looked angular and sharp underneath a white lab coat. I explained Gracie's skin problems and bowel disorder. She listened closely as she palpated the marshmallowy contours of my cat for swollen organs. Gracie was then taken into the back room for a blood draw and emerged with a completely shaved bottom. She was diagnosed with irritable bowel syndrome and a very matted backside. We were given Flagyl, a drug most commonly used in humans who believe drinking the water out of a mountain stream or eating the ice out of their margarita in Mazatlan is a wise idea. It was packed into five plastic syringes and looked like peanut butter. I was instructed to store it in my fridge and shoot one dose down Gracie's throat once a day. I was given a small bag of low-residue cat food and challenged to feed her a mere three-quarters of a cup a day. We'll see how that goes.

Gracie seemed to feel hugely better when we arrived home. She found a spot in the sun next to my desk and was lying beached on her back looking like a dead but happy penguin when the vet called to report her blood work was normal. I think Gracie is good for another 10 years, although we may have to subject her to a vigorous booty shaving here and there.

Side Note: As for the comments I received regarding my last post, I was tickled to hear so many great cat stories. Thank you for brightening my day. I think the prize for the scariest cat, however, goes to Kim's cat Harold. By a landslide. An appropriate prize in this case may be some Bactine and some gauze bandages. Just a thought.

Monday, May 21, 2007

Special Needs

The time has come to take my cat to the vet. She's sick. It has been probably seven years since she has been in. I just got off the phone and found the conversation with the woman who answered very awkward indeed.

Woman: Hello, Animal Hospital.

Nancy: Um. Yes. My cat has some problems and needs to be seen.

Woman: What kind of problems?

Nancy: Well, she doesn't seem to be feeling well. You see, she is normally half wild, and...

Woman: Oh, she's an outside cat?

Nancy: No. She lives inside. Anyway--

Woman: Oh?

Nancy: Yes. She is normally very grouchy and undeniably unpleasant but seems extra grouchy now. She is growling much more than usual.

Oh my.

This is precisely why I hate taking my half-feral cat to the vet. Four weeks ago I had the phone book open to the local carpet cleaning businesses but am thankful I put off calling them, as she has developed a rampant case of cat dandruff and diarrhea. She tries to lie on the carpet and look relaxed, but every muscle in her body is twitching, and her eyes are wide and demonic. She has been like this for years, but lately she has become much worse. When I have company, my adult guests steer clear of her, giggling nervously and looking to me for reassurance. My friend Kathy once admitted she felt sheepish she was frightened of something that weighs less than a bag of flour. Frankly, I don't blame anyone for being freaked out when they come over.

How does one explain a cat like Gracie?

In 1996, I purchased my very first home. It was a massive accomplishment for me after I procured my first "real" job. For the first time, I had 1000 feet to myself. I threw a modest housewarming party for myself to celebrate, and my guests sat on the carpet scattered about the house drinking daiquiris, as furniture was sparse at that point in time. My friend Shaena came to the front door with a tiny black and white kitten under her jacket. This cat was given to me as a very adorable housewarming present, although she told me that if I was not interested in keeping said fluffball, there was someone else who would give her a good home. No pressure.

The first night, our lives were forever entwined. This animal slept nestled in the space between my neck and clavicle, her strong little motor purring under a bird-like rib cage. There was no chance I was going to give up my new furry roommate. It was nice having another living thing in the house with me. As she grew, her antics included sprinting into the living room, leaping up to grab onto the rim of the lamp shade, and orbiting the lamp at warp speed before letting go to crash into the floor. On many nights when I was in bed in the dark, I heard a splash and felt her jump into bed with me with sopping wet fur, acting as if nothing had happened. Apparently, she often drove head first into the toilet, unable to stop on the slick seat. A graceful animal she was not, so, of course, I named her Grace. This eventually morphed into Gracie. Gracie Mae.

Gracie Mae is a one-person cat. In other words, I'm it for her. We lived alone in that house for a couple of years. When I was informed by the city that my cul-de-sac was going to be forced through to handle rush hour traffic flow, I decided to sell. After a few showings, my Realtor gently informed me that Gracie needed to be absent from the house while it showed, as she was scaring potential buyers. Apparently, the "Beware of Cat" posters I put on the door were less than welcoming.

The house sold, and I bought a cute little two-story house with peach paint. The Realtor sent a neatly typed, very professional letter thanking both me and Gracie for our business. By this time, Brian had come into the picture and visited often. When we married and his belongings came off the moving truck into my house, all hell broke loose. Before his dresser settled into the carpet on the bedroom floor, Gracie was smack-dab on top of it, hissing and growling at him when he tried to retrieve socks or underwear from the top drawer. She even charged at him on several occasions without warning, wild-eyed and practically foaming at the mouth. I'm not kidding. I have never seen such hatred from man nor beast. I was mortified to have my very own episode of Wild Kingdom showing nightly in my own living room.

As the years passed, Gracie and Brian formed a relationship based on simple tolerance. They now ignore each other unless Gracie wants something that her floppy, useless thumbs won't help her get for herself. My peach-colored house sold while Gracie was temporarily relocated during showings. At one point, my new Realtor had to enter the house alone and said Gracie snarled at her and refused to let her in. Soon thereafter, we moved into a new home, and Erik was born. Gracie seemed to understand what he was and left him alone, hissing at him only when he ventured too close. She is now very good around him, although she can still frighten our visitors by hiding in the guest room and making her presence known right before the lights are extinguished or jumping onto the back of the couch and causing each and every adult buttock there to rise instantly.

And so you have it. The story of Gracie Mae. I love that old girl, and she loves me.

I hope she is okay tomorrow, but, more importantly, I hope that the new vet survives her tangle with terror.

Friday, May 18, 2007

I'm Alive

Life has me in a headlock lately, and I'm exhausted. Although Erik finds himself in a sour humor by mid morning, he still refuses to nap. There is always a silver lining to everything, however. I am no longer trapped in the house until 1 p.m. when my work day begins. I am allowed to pick up work from the medical center anytime after 11 a.m. and often take him with me so that is out of the way for the day, sometimes hitting the grocery store on the way home.

Work has not been going well, to say the least. We are buried, and one doctor in particular is apparently very unhappy with us. My partner is at her breaking point, and the stress is palpable this week. We have been working as much as humanly possible. It is halfway through the month and I have done almost as much as I usually do in a month. I worked like a fiend yesterday afternoon and was able to enjoy the evening, which was wonderful. There is much more to do this weekend, but I hope to escape downtown for a bit this evening to have a margarita and some peace.

Last night Brian's friend Ben spent the night. He is some sort of automobile broker and was in town to deliver a truck. I barbecued teriyaki steak/vegetable kabobs and shrimp. Thankfully, I added the shrimp because Ben gave up beef months ago, being from Fiji and wanting to respect his Indian customs and beliefs. In my defense, the last I knew, he occasionally enjoyed a juicy hamburger. I had no time to bake yesterday with pool therapy, work, and errands and was forced to purchase a bag of sourdough rolls, which Erik thought were the nastiest things ever, and some sort of fluffy, swollen chocolate confection for dessert. I was quite surprised when Ben told me he did not eat chocolate, as it reminded him of a horribly traumatic childhood memory in Fiji. After hearing this story, I gave up chocolate as well. We really need to have our friends over more often so I get a feel for what to fix! Despite my culinary setbacks, we had a lovely dinner in the dining room by the light of the setting sun, and I eventually left the two old friends to chat into the night. As I am fighting a nasty cold, I took a shot of NyQuil and dreamed I was behind my counter at the drugstore again, advising a woman to consult the mall directory for a store that might carry an item she needed. Too real.

This morning Brian left for work and Ben began searching on the Internet and phone for another vehicle to purchase to take him back over the mountain. While he did that, I decided to work out. I have adopted a new fitness plan that has been going quite well for me lately without two days of headaches following each workout. In the middle of my workout I glanced into the kitchen and saw Erik dry retching with his hands covered in a mysterious orange substance. I pressed pause and ran to find Gracie-cat was ill and her bottom had overflowed on the rug in front of our house guest, who was obliviously professional on the phone but politely covered the mouthpiece and asked if he had spilled his coffee (Side Note: Do men smell anything at all?). This is a perfect illustration of how my life has been lately. I washed Erik off in the bathroom and returned to scrub the rug with Pine-Sol as Ben continued to wheel and deal. Sigh. I finished my workout and here I sit.

Speaking of housebreaking, I have gone through the stack of literature regarding toilet training. According to these handouts, our son is not remotely ready. However, I was quite amused to read information on toilet training pertaining specifically to Williams syndrome. Did you know that kids with WS often need to urinate more frequently than other children? Also of note was this:

...other methods may be needed. One such method is a pants alarm. This consists of a sensor which is attached to a pad that is inserted into the child's pants.


That's just what Erik needs. A shrieking alarm emanating from his own crotch. I have enough trouble keeping up with the failing batteries in the toys and electronic devices already in this house, let alone in my own son's britches. The handout goes on to assure the reader many noise-sensitive Williams children are successfully trained this way. I can't help but wonder what kind of issues one would develop regarding bodily functions as an adult after that kind of childhood memory. On further thought, maybe it would create the opposite effect. Perhaps one would proudly and loudly announce from their office cubicle each time they wanted to use the restroom, much to the delight of their coworkers.

For the record, I am not going to find out.

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Tuesday, May 15, 2007


Erik and I just returned from breakfast at my parents' house and then school/parent group. We ate my mother's to-die-for rhubarb custard pie with Erik's great-grandmother, who was here to visit and watch my mother's symphony concert.

With the change in the weather, I feel enormous changes coming in our family as well. Erik uttered the word hungry after a nap the other day, although he has not said it since. He has never told anyone he was hungry before. It was reported by some staff members at his school that he has actually been seeking the company of other children and calling for them by name instead of running away from them. Today was no exception. He was singing a little song to himself when we left. He has transitioned into his big boy bed, which intially went well, but now I can't get him to go down for a consistent nap. This means the two to three hours I had during my morning to work or write are ancient history. My blog entries may become further apart for this reason. I also suspect he is not staying in bed at night, although he always stays in his room. I will go by his door at night and see that his light is on. I turn it back off, put away his toys, and lead him back to bed. I find him playing on the floor in the morning, and he is becoming uncharacteristically surly at the end of the day. I suspect he is not sleeping enough, although he does get a decent nap in his playpen at my parents' house in the afternoon. As much as I cheer for his new accomplishments, things have definitely been turned up a notch in terms of being challenging. What is most scary to me is that after months of successful therapy, Erik is lightning fast on his feet. He runs straight down the road for the street and does not consistently follow commands to stop as he heads for cars and trucks roaring by at 50 miles per hour. We are all working with him on this. He often becomes angry and frustrated in public and easily wrenches his hand free from mine to run from me when I try to steer him in a direction he does not wish to go. It's typical 2-year-old stuff mixed in with an inability and/or unwillingness to follow simple instructions and commands. His therapist agrees this is scary stuff.

Am I ready for this? Oh, heck, I don't know.

The last time I felt like this was in October after he received his AFOs and instantly talking to strangers for the first time. I was frightened then, and I suppose I am frightened now. I adjusted before, and I imagine I will adjust again. It's part of watching him grow.

We are anticipating four more weeks of summer early intervention program after the Fourth of July, and we will continue home visits. After that, it's off to preschool in the fall, baby, on the short bus. Even though he will spend two years in preschool, this is a pretty gigantic step for me. It seems like I just became a mother, and, although I do not consider myself overprotective, it is hard for me to let him go a little more as time goes on, knowing how dangerous this world is for a trusting soul like my son is...and will always be. It is simply no longer possible for him to be with me 24-7. He seems to thrive despite each and every change and I love to watch him succeed.

I now find it easy to explain this journey I'm on to a mother with a typical child. No, I can't describe exactly how it feels to another parent, but I believe I succeed in getting as close as humanly possible here. What I can honestly say is that many of the things parents usually watch their children do automatically we are required to teach our kids to do -- from manually positioning their bodies in order for them to learn to move themselves to teaching them the simple art of play. It can be exhausting to my bones, but it can be rewarding, too. I have a library of handouts and publications to instruct me how to best teach my son to do things most children take for granted. I have manuals on his particular syndrome. I received approximately SEVEN thick handouts today on language, music, play, and toileting today. At group today the speech pathologist told us about a woman whose first child was born with a disability. This mother threw herself into caring for this baby and doing what she was instructed to do by professionals. By the time her second child came, she saw everything she was required to teach her first child just happened in her new baby. Naturally. No handouts. No books. No speech pathologists. No physical therapists. When I watch other children, I am amazed. Many times I see a child do something on the playground that comes completely natural to them, and all I can utter is, "Wow." I have heard the exact same word come from my husband on such an occasion. We look at each other, smile weakly, and shake our heads in disbelief.

On the other hand, Erik is incredibly amazing, too. No, many things do not come naturally to him. It's frustrating, hard work for both of us -- as well as the people who love and care for him on a daily basis. But when he does that one thing that I never thought I would see him do, I honestly feel like I can walk on air. I know he had to put his heart and soul into learning how to do it. And that is something a parent of a typical child may never fully understand. That is one of the incredibly beautiful, bittersweet gifts that come with having a child like mine.

As for any bad feelings I have had lately, I have concluded that (a) I still have bad days here and there and (b) because I don't have as many bad days and my husband and I are on different pages at our own speeds on this journey, I feel lousy. That's right. I feel bad for not feeling as bad anymore. It's part of the process I didn't see coming, but here I am.

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Sunday, May 13, 2007

Happy Mother's Day!

Thanks, Rosemarie, for sharing this video. I hope you don't mind the fact that I "borrowed" it, too. Anything that makes me snort out loud is just fine in my book. Thankfully, I was not yet drinking coffee when I stopped by your blog and clicked on the play button.

Happy Mother's Day to my mother, all of my fellow mothers, and those who dream of being mothers. I hope all of your dreams come true.

Thursday, May 10, 2007


There is a pale scar just above my pubic bone that marks the location of the incision doctors created the day Erik came into the world after nine disappointing hours of pathetic, inefficient labor. I witnessed my contractions enthusiastically spike on the monitor by my bed while the nurses flushed generous waves of Pitocin, a labor-stimulating drug, into my blood, but the pain never came. Eventually my baby grew tired and weak in my womb, and we were quickly wheeled to the operating room, where we were surrounded by masked, anonymous faces and my body was rocked with strange, involuntary shock-shudders.

After my baby's birth, my scar was punctuated with shiny staples. The nerves had been rudely severed and were no longer able to communicate with my brain.


It was then that the baby on my chest began to cry. He cried and cried for months with no end, and that numbness spread throughout my entire body via each tiny, exhausted capillary. There were no coos or smiles from this baby. He drank from me, cried, and slept. I cried, too. When I dared to look down into his scarlet, suffering face, I was horrified. I felt absolutely nothing at all.

The numbness was complete.

As many months came and went, our lives changed. The crying subsided. One day without warning, a smile appeared like an upside-down rainbow. A tiny, beautiful promise of more.

And there was indeed much more to come.

The scar on my body is barely visible now. It has healed more efficently than any of my previous scars have and threatens to disappear entirely, which, quite honestly, makes me a little sad. I'm proud of that scar because it reminds me of the very beginning of this journey. It reminds me of the very last day I was filled with the innocence that will never return and the very first day I met someone who would forever change life as I knew it. Someone who would eventually teach me what it means to feel each experience in this life.

It's amazing.

Today when I run my fingers over that scar, the numbness is completely gone.

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Wednesday, May 09, 2007

Chinese Freeze Tag

Rosemarie has tagged me to tell of 10 interesting or surprising things about me. It sounded easy, but it was really hard. Consider yourself tagged if you would like to participate, as I would like to know more about you.

(1) I'm afraid of the dark (and all things I cannot easily see or explain).

(2) I cannot stomach movies about zombies, pod people, or any variety of the undead whatsoever. I guess a trip to Haiti is out of the question for me.

(3) Raccoons freak me out.

(4) I believe in God and talk to him often, sometimes out loud. We seem to hear each other best in the car, in bed, or in the shower.

(5) I have rare bouts of PTSD from being robbed at gunpoint years ago. On occasion my blood still runs cold when I am in a store or restaurant and a man enters with his hands in his pockets or carries a backpack.

(6) I am darn good with a barbecue.

(7) I have always had a thing for Bert on Sesame Street. I have a secret collection of Bert paraphernalia that existed long before I had a child. Who knew a Muppet could be so adorably weird and wonderful?

(8) For all of my life I never felt like I fit in.

(9) When I think about many things that take place on this planet and who is here with me, my heart swells. I love many things about this life.

(10) I lived completely alone for approximately ten years.


Monday, May 07, 2007

Counsel This!

I haven't had much to write lately. Actually, that's not entirely true.

Not much has transpired, but, as most of you know, I could easily write volumes about my adventures clipping my toenails or sitting on my porch doing nothing at all. There are always voices in my head I could write about. In the last week a friend of mine, who happens to be a travel agent, invited me to fly up to Anchorage, Alaska with her in a couple of weeks and take a week-long cruise. As much as I want to do this, I just don't have the time right now with work. I wish I could. Instead, I look forward to our annual girls' camping trip in the next couple of months.

I'm in the midst of another severe emotional slump. I believe that once again I am soaking in a pool of female hormones wreaking havoc on my brain. I feel a heavy, dark cloud looming over me and can't shake it off. It will recede in the coming week, but I must live in its shadow for the time being. I did a 45-minute exercise video today and am fighting off the sick, pounding headache that plagues me these days every time I exert myself. It hardly seems worth it, but I really needed the endorphins today. I turned on the television this morning to watch the Today Show and watched part of a special on infertility and women my age before my heart shattered. I had to turn it off. I went on to do some laundry and clean the kitchen. As I mindlessly stripped the sheets off Erik's bed this morning and tossed the colorful ball of fabric into the laundry basket, I paused long enough to look out the window. It suddenly came to me how incredibly amazing or unbelievably stupid it is that we have gone this long without any sort of counseling about what has happened in the last year. I definitely feel like the bulk of my grieving is over but that I am holding small scraps of it in my hands I don't know what to do with. I just stuff them in my pockets like old tissues so they are out of sight and go about my day. Am I really better? Or have I successfully anesthetized myself emotionally? There is a numbness in me that wasn't there before. My personal relationships are suffering because of it. I am so very numb.

There are people who have gone through much less who have required some sort of therapy. People who have lost pets. People who saw some sort of tragedy unfold on the nightly news. People who have anxiety attacks choosing a fabric softener.

My child is mentally retarded, and I just go about my business whistling as if I'm Mary Freaking Poppins. At this rate, a blood vessel will eventually give in my head and fell me like a giant, lipstick-wearing sequoia. Brian will come home and find me in a pile in front of the washing machine.

I can just see it now (cue harp music).


Nancy, Reclusive Blogger and Mother of Dark Humor, Dead at 36

Nancy, best known for her brutally honest, rambling weblog, died suddenly Wednesday. She was 36 years of age.

Born in 1970, Nancy, the once gregarious and flamboyant 1990 world record holder and three-time world champion upside-down margarita drinker, was seldom seen outside her ranch house on the outskirts of town, although she was sometimes spotted at special ed parent group quietly clutching a cup of black coffee. Once dubbed "America's Favorite Party Girl," in her later years she adopted a strict lifestyle as an eccentric recluse, turning down invitations to social functions and instead shutting herself in her home and ordering numerous pizzas. She enjoyed working crossword puzzles, writing angry letters, and cursing using filthy French words. Those closest to her reported they often found her in front of the television watching Dawson's Creek and drinking cheap red wine, even though she admitted having seen every episode at least four times, with Gracie, the feral cat she kept as a pet, curled in her lap and growling at unwelcome visitors. Her home was in its usual immaculate condition when she died except for a handful of dryer sheets strewn around her body after a major blood vessel, weakened by decades of constant low-grade irritation, ruptured in her brain, killing her instantly. Brian, her devoted husband of 6 years, told the press Thursday that she appeared uncharacteristically peaceful and wore a half-smile on her face when he discovered her Wednesday in their laundry room with her beloved basket of various cleaning products by her side.

(harp music fades)

The last time we tried counseling was when Erik was small and our world was filled with sleep deprivation, hopelessness, and worry. And that was BEFORE the diagnosis. We knew there was something wrong with life in general, but we didn't know what. As you can imagine, that was not fun. The sessions were not a positive experience, and I came out looking like a complete horse's ass, as the therapist seemed to enjoy attacking me like a soft-spoken pit bull. However, I have some pretty serious issues about children, childbearing, motherhood, and just being a woman rapidly approaching 40. Aging has never bothered me until the concept of childbearing was introduced. I'm angry because the joy has been stripped from a lot of being a woman in general. I'm angry because I will never again tell someone who is expecting a child that things will turn out just fine. Why would I? They sure as hell didn't turn out fine for us. As hard as I try, I still feel like I have failed. I don't want to try again. I don't want more kids. And it kills me because I WAS BANKING ON THE ASSUMPTION THAT THINGS WOULD TURN OUT FINE. Now what? I'm not sure.

All grieving aside, I just want to find PEACE.

I am haunted by many what ifs these days. What if I had stayed pregnant years ago? What happened to those little souls? I don't really mourn them anymore, but I just wonder how they would have turned out. What was wrong with them? Were they deformed? It doesn't matter. You see, I was enthusiastically advised to try again, as things would turn out just fine. After all, everybody and their dog has miscarriages! I was worrying about nothing! I put my heart and soul into trying again, trusting in the words I heard from them all.

Things didn't turn out fine.

Not at all.

Color me a little pissed off.

I'm afraid of going to my grave with regrets. Do any of us make it without them? I never thought about it until now, and I'm scared. I want to get old gracefully and with the least regrets possible. I have discovered that this whole process entails a lot of side effects and byproducts that must be either ignored or dealt with. I like to deal with things.

On top of everything, I feel myself in this endless cycle of therapy, work, and sleep. I know that things will change in the fall when Erik goes to preschool. I just want something different. I want progress. I want peace with my life.

* UPDATE: I now have the name of a counselor who specializes in grief and will give her a call.

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Friday, May 04, 2007

A Life Like Yours

It is time to sit down and reflect on Sophie's Run last weekend. If you haven't read about it here before, it's a race put together to benefit the future needs of a little girl named Sophie who has Williams syndrome and raise general awareness of WS. This was our second year participating. Last year we were just one month into our diagnosis, so, needless to say, this event is a very emotional one for both me and Brian.

We had more friends and family than ever with us this year and made a grand party out of most of the weekend. At one point, someone commented that we had "quite an entourage!" I especially enjoyed spending some time with our nephews, my brother-in-law, and my sister-in-law, who live out of town.

Sophie's Run is one race where you will never hear the sharp crack of a starting pistol. This means I will never have to stop and hold my screaming child with the sensitive ears. This in itself illustrates how we are treated by the people we meet there -- They understand Williams syndrome and all that goes along with it. I will always harbor a sense of guilt about expressing how alone I feel here when I am lucky to have so much support from my friends and family. However, to be in the presence of those with children like our own son is such a powerful need that our friends and family seem to understand. We are able to share knowing smiles, giggles, and tears over things that nobody else would begin to comprehend. It feels wonderful. What makes the day more special is the fact that we are surrounded by the friends and family who support us every day and have watched us struggle. In this sense, we get to have our cake and eat it, too, with support from every direction. In this case, it was Sophie's birthday cake!

I knew there would be a woman present in her 40s who has WS. I spotted her immediately as the race started. Looking back at my photos, I am never within a 30-foot radius of her. At the time, I didn't realize I was avoiding her, but that's how it seems now. To put it bluntly, I was scared out of my mind to talk to her, although I was so happy she was there. She attended the pizza party afterwards, and Brian made a point to strike up a conversation with her and try to get a feel for her life. He wanted to ask many more questions than he did, but he was afraid of adding to her apparent anxiety and making her feel like she was being interrogated. He collected what information he could in a sensitive manner and seemed to come away with more questions than he started with. Erik also met this woman as well as a new friend, Brandon, who came with his parents Tina and Marco. I was extremely happy to see them and walked with them for the majority of the course. Maddie was there from last year, and you will see her amazing smile in the slide show. She has grown!

Never in my life would I imagine we would experience the devastation and challenges that would come with having a baby. Brian and I do not have the luxury of being in denial anymore as we watch Erik grow and his differences become more apparent to the world. At the same time, I never imagined how many blessings this child would bring into our lives. In short, he is simply a delightful person I can't wait to see every morning.

One year ago I thought I would never smile again, but I do. As I felt the arms of my old and brand new friends around me and their tears mixing with my own on my cheek, I felt like my desperate prayers had been answered--in a big way.

The following is a speech read after the race that was written by Sophie's mother Heather. I was awestruck and somewhat blindsided by her words and asked her to send me a copy of what was said. She was brave enough to put into words what a lot of people don't dare say. And that is why I love her.

We thank you all for coming...and for getting to know Sophie, which naturally leads to loving her like we do. We, too, find her utterly irresistible. But we can't help but wonder when the day will come and the world won't find her so irresistible. When the world she has come to trust, with all her heart, shuns her for her differences. The horrible day when she is treated as incompetent, made to feel inadequate or God forbid someone calls her handicapped/retarded.

Please remind yourself and your children that people with disabilities are competent, deserving individuals of value. One in five Americans is a person with a disability. We're all the same and we're all different. People with disabilities deserve to lead A LIFE LIKE YOURS. They deserve access to quality medical and dental care and the opportunity to work where they wish, develop friendships, and live in the community setting of their choice.

Too often we blame individuals with disabilities for their lack of success when it is our society who dictates that many people with disabilities remain in the margins—segregated, dependent, and WITHOUT CHOICE. Let's do better by giving the people with disabilities in OUR OWN lives the tools and support they need so they too can make their own choices which will hopefully lead them to a life of purpose and value.

Of course our goal is for Sophie to live an independent adult life in which she supports herself. Yet because Sophie was born with Williams Syndrome and 75% of individuals with a disability remain unemployed we are formulating a "PLAN B" to help ensure she will have the support she may need to lead A LIFE LIKE YOURS.

So today we THANK YOU for being here and helping Sophie with her very own "plan B".

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Wednesday, May 02, 2007

Brady's Walk 2007

Check out what my friend Kerry did last weekend -- Brady's Walk.


It just goes to show you how much support we have from family and friends and that we can do whatever we set our minds to.

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