Erik Quinn: The Heart of a Family

Sunday, May 03, 2009

Welcome to the Club

From my friend and fellow WS mother, Laura, about finding yourself the parent of a child with special needs for the very first time. I don't think I have ever read anything so beautiful or hopeful as this. I remember being literally welcomed into "The Club," and wondering exactly what that meant. I wish I had this at the beginning of it all.

Don't forget to grab the Kleenex. Click here.

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Saturday, November 15, 2008

Lock Up When You Leave

Will I ride the summer winds
or dance upon the crimson horizon
Will I find paradise in hell
If I go deep into the woods
If I go to this cabin


-- "This Old Cabin" (Agalloch)

You might remember that I used to daydream about hiding in a log cabin when my heart simply could not take any more pain. I would place Erik on the soft, braided rug that cushioned him from the rough planks of the floor to play. I would light a fire and bake something that filled the room with the scent of cinnamon and vanilla. The red and white gingham curtains would always be drawn tightly shut over the little glass panes above the kitchen sink. The place felt ancient and worn but gave me so much comfort. The two of us were always snuggled inside, away from the world. We were perfectly bonded as mother and child there, and no words seemed to be necessary. I never saw what was outside and had no desire to peer into the darkness that seemed to surround us. In fact, I can't remember the place having any other windows at all. It was the strangest daydream I ever had. I used to go there quite often.

I have no idea how or why.

I can remember the place vividly in my mind, but I haven't been there for well over a year now. Sometimes I want to return to air the place out, but I know that is an excuse to poke around and see the place clearly, which I was not meant to do. We seem to have made our way out of darkness of the thick forest for good. I am still sad that I can't seem to find my way back. I suppose it served its purpose.

I have always wondered if people can detect the secret that is inscribed on Erik's DNA. I have heard that it is sometimes visible in his smile or on his face when he cries. The sheer horror of the diagnosis has faded after being exposed to daylight over the past couple of years, and I now find myself curious about the way the world sees him. Maybe that stems from a little fear, too.

I remember the day I knew my baby was different. I held a friend's infant on my lap. When this animated little girl smiled at me and simply moved her body, I saw everything clearly. The room began to spin, and I swallowed hard to fight the urge to vomit. I can't remember exactly what I said to my friend, but she definitely remembers that day, too. That was the exact moment I saw what had been lost. It just happened to be wrapped in soft, sweetly scented baby clothes cradled in my lap. A few days later I found the cabin in the woods.

I can still see the differences in Erik as he grows, and I am becoming comfortable with them. Hell, I even love most of them. At the same time, though, I'm blind to how the rest of the world sees him. It is not my place to see him any other way than I do. Sometimes, though, I wish I could step outside of myself and take a look. Maybe it's not important. I just feel that it might give me more tools to help him find his way somehow. I just don't want anything to injure me so badly that I feel like hiding again. There are some things, I suppose, that I am not meant to see.

Erik and I are no longer hidden from the world. Our interactions with it have been mostly wonderful, but we are still incredibly new at this. If I am asking questions, I think I am ready to open my eyes and tackle what comes our way.

There's no turning back now.

I just hope that the woman who discovers that strange little cabin next takes comfort in the faint scent of cinnamon left behind and the warmth of the fire she will eventually learn to build. I really miss that place.

However, it's time for me to leave it for her to find.

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Friday, October 24, 2008

Hatred

Today I sat on the front porch steps by myself. The aspen tree standing guard in the center of a landscaped island heaped with river rocks is gigantic compared to a few years ago. We have a widening spot of cool, delicious shade on our lawn that wasn't there before to document its progress. The leaves quaked and hissed at me in the breeze that chilled the warm air and raised goosebumps on my arms. Robins scolded each other as they searched for worms, and their dorky, round bodies lurched over the grass. I looked for my lizard friend under the yellow, brittle leaves of the shriveled irises next to my feet, but he was gone.

I suddenly remembered moving our things into this house while Erik rested deathly still inside of my belly. I remember the dreams I had back then and how proud I was to tell our new neighbor that we had a bun in the oven (I have always detested that expression but was so delirious that I used it the first day I met them). God, I loved being pregnant. I have never been so utterly, ridiculously happy. People probably thought I was sniffing glue all of the time. Yeah, I was that happy.

What the hell happened to that girl?

Today I found myself wanting to shut the front door to the house and hide behind it. More than I already do these days.

Today was bad.

I tried so hard to get Erik to pick his coat off the floor at school when we arrived, but he couldn't seem to hear me around the other children. Seriously. Complete deafness. He still doesn't understand how to hang up his backpack. After school he staggered and fell off the bus, frightened of the noises the old-fashioned metal fan above the driver's head made. He had asked her to turn it on as he was leaving, and she did, not expecting his startled reaction. She saw his face and quickly promised him she would never, EVER turn it on again, but he was so scared he jumped off the chunky steps right into the air without a second thought. Like a frightened animal. I caught him in my arms, and he struggled to get out of my grip. I almost miss the days he used to let out a simple wail when he heard a noise. He began the repetitious, frantic chanting. "Turn on the fan. Turn on the fan. Turn on the fan." Even though that was the last thing he wanted. She then tried to strap his backpack on over his arms, but I know there is no point. At these moments, I feel like screaming. The bag will sag off his shoulders to the ground, and he will leave it behind without knowing it was even there in the first place.

We finally made it inside the house, and I chopped his peanut butter and jelly sandwich into tiny pieces. He crammed all of them in his mouth, anyway, before he started to gag on them and extracted them out with both hands, spitting them out on his placemat in a slimy, solid bolus for me to clean up. This was after I stood next to him and coached him for five minutes to take small bites. These days he insists on fighting me every step of the way, yelling NO at everything I suggest and asking me thousands of times if he gets to see his grandparents, no matter how many times I tell him the answer. I tried to play with him today, knowing I was only torturing myself. The little moments of connecting with him here and there are sometimes not enough for me. I tried to get him to lead me in the silliness of his choosing, knowing it would fail and leave me more depressed. Instead, he scattered the toys I offered to him all over the floor and left. He would much rather empty my candle cabinet and spin and roll votives around for hours at a time with bright red, wet streaks forming behind him from the toes that don't have normal skin on them to keep the blood on the inside where it belongs. On dark days, I pack frequently discarded toys into boxes and take them to Goodwill or to his school for the children who like them. I can't even bear to look at them.

I hate toys.

I hate playgrounds.

I hate baby showers.

I hate birthday parties.

I hate classrooms.

I HATE THEM.

I hate the fact I want more moments of normal. I also hate the fact I have no desire to get pregnant and do this all over again. But I don't. I simply don't have baby-related dreams anymore. They're history and have been for years. I don't want to pretend I'm not afraid of finding myself rolling around on an ultrasound table in agony experiencing yet one more miscarriage or delivering a child with another chromosomal abnormality. Of failing one more time as a woman to do what should come naturally.

Here's the thing, though: I just don't want to.

Even if I did, everything in my gut screams me to stop. Instead, I want to try to move on and find new dreams that will make ME happy. There is nothing more maddening to be immersed in people who tell you what you should want. What you should do. If you do not want the same things, eventually you begin to wonder what is defective in yourself. And that is not good. I'm tired of explaining myself to people who don't understand. Of defending myself.

I hate the hurt that this decision creates around me in people I love who must remember the girl that used to have traditional dreams. I turned 38 this summer. I hate aging, knowing I might someday be an old woman who might wonder "What if?" Will I hate myself for it later? I honestly doubt it. I am that certain about my instincts. Besides, my pockets are already crammed full of WHAT IFS, and they don't do anything but weigh me down and threaten to help me drown.

Sitting there on the steps, I began a weak attempt to list the good things that have come with the weird directions my life has gone. Nothing (and I mean NOTHING) turned out the way I thought it would, but it's not all bad, I guess. I'm lonely sometimes. I'm horribly depressed sometimes. I find myself incredibly angry sometimes. On days like today. But I can still count my blessings. I have lots of them. They are just more difficult to visualize when the pain in my heart has me doubled over and I'm looking at the ground. I want to curl up in a ball and tend to my wounds on days like today. Autumn is a hard season for me, anyway, because it reminds me of the end of my first pregnancy.

I can count my blessings. And I will do that tomorrow.

But right now I just don't want to.

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Monday, August 18, 2008

Morning Rambling

I turned on the news last week as I fixed breakfast and heard that a man on a bicycle had collided with an SUV making a turn not far from here. He died at the scene from massive head injuries. When they announced his identity, I gasped. He was a member of our church congregation whom I see regularly. What was worse, however, was that he was the son of my author-friend who has been so kind to me and Erik. You might recall that she is also the mother of a woman with severe developmental disabilties that resulted from a bout of childhood meningitis. She wrote a book about her family, and that's how I came to reach out to her and ended up sitting in her home eating freshly-baked scones last winter. You would think there would be a limit to the amount of pain one could experience, but apparently there is not. I can't help but feel frightened by this.

I have a head cold in the heat of summer. Actually, all three of us are sick with it. It was over 100 degrees yesterday, and I stayed on the couch watching Food Network challenges. There was a dry, windy storm of some sort in the middle of the night, and the gusts whipping through our bedroom windows and doors were almost deafening at one point, making it sound as if we were riding on a stagecoach in the dead of winter. I opened things up even more, and the whistling at least ceased. The air smells like a campfire, so I assume something nearby is engulfed in flames. This does not result in high-quality sleep. I'm sitting in my office now, and rumbling thunder and sheets of lightning are beginning over the desert. It certainly doesn't feel like five in the morning.

Erik's bowel has been malfunctioning lately. One of the wonderful symptoms WS often manifests in children is constipation so severe that it can result in prolapse of the rectum. Erik briefly had constipation as a infant when his calcium levels were probably sky high and we were completely unaware of his syndrome. I remember seeing blood once when a nurse took his temperature. Since then, however, things seem to pass right through him, sometimes undigested. I have to change his bedclothes almost daily, as the amount of what comes from him easily maxes out and overflows his fluffy little diapers. I change him often. What comes from him has little to no at least normal odor and looks, to say the least, alarming. There is a lot of mucus. I will call the doctor today. Three things that come to mind are (1) food allergy, (2) Crohn's disease, and (3) thyroid problems, although it could be anything, I suppose. This has gone on for months to some degree but only seems to be worsening in intensity and might make school more than a little dificult at this point. I'm terrified he has a food allergy. The last thing we need is to be subtracting things from the relatively short list of items he eats.

Erik has discovered the joy of attending barbecues. He loves everything about them and says "barbecue" in his usual Cajun accent. I can just visualize his cute little face on a bottle of BBQ sauce on a supermarket shelf someday. Hey, it could happen.

And now, as promised, CHIA: DAY ONE.

1) Submerge small terra cotta cat in bucket of water. Leave overnight, ensuring kitten is good and dead.

2) Mix a portion of the seeds from provided packet with one-quarter cup water. Let sit overnight until the mixture thickens into a gel reminiscent of the opening scenes of Invasion of the Body Snatchers. Tell family what is sitting on windowsill so dark muck does not get spread on toast or dumped down garbage disposal.



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Thursday, July 03, 2008

Levy Breach

I attended my support group for the third time tonight. About eight of us met at a Mexican restaurant for dinner. I tried to keep myself in check, but when it was my turn to speak, I just couldn't hold it in any longer. At first, I felt like throwing up my chimichanga, but I was honest and spoke for some time. I managed to share my true feelings with people I could reach out and touch, not a computer I could turn off if I began to feel uncomfortable. It was horribly difficult, but I did it.

And it finally happened.

I cried.

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Wednesday, February 27, 2008

Blake



Tonight I close my eyes,
holding the terrible knowledge that as I sleep
one hundred angels will tug with all their might,
and someone's child miles away
will be replaced by a handful of memories.

My heart swells with pain,
and sleep feels sick and selfish.
How can my life go on when one is about to cease?
I can only dream of a sweet face laced with tubes.

Tonight his fight is scheduled to end.
I dread the morning, when I will open my eyes to grief,
knowing his sighs tapered as I slept.

No more pain. Only peace.

Rest, angel.

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Sunday, February 24, 2008

Howling

I awoke at 2 a.m. today to an eerie sound that seemed to envelop the entire house. As I emerged out of the grainy fog of sleep, raised my head slightly from my pillow, and squinted in the darkness, I realized there were a number of coyotes outside yipping and howling their sad, haunting desert songs. I tried to return to sleep, but it was impossible. I decided to climb the stairs to my office and check on my fellow WS mothers, which is something I haven't done for a few days.

I feel as if I have been punched in the stomach. I can hardly breathe.

Most of our children with WS have health problems, ranging in severity from annoying to disabling. Their bodies are often stricken with ailments that afflict the elderly: Gastroesophageal reflux, hypertension, rectal prolapse, heart disease, skin disorders, joint problems, severe constipation, and hearing loss, just to name a few. Even Erik takes medication twice a day to keep the acid in his stomach from gurgling up his esophagus, which apparently has never worked the way it should and never will. His left leg swings inward when he walks, he must wear orthotics to walk correctly, and his muscles and joints are stiff. I can live with that.

Sometimes, though, medications and surgeries fail to automatically fix anything at all as we expect them to. There are moments when I find myself wanting to have a chat with whomever is in charge in the universe and then asking for his or her manager. There are experiences reported by the WS families I know that remind me that in the end I have no control over much of anything. Because of Erik's excellent health, I forget that sometimes. I administer his medicine, apply his skin cream, and soothe his anxiety, feeling as if there is nothing I can't fix or pay someone to fix that goes haywire in him. This morning I realize once again how extremely lucky I am to not be in a hospital room with my son due to a life-threatening illness. How imperative it is that I never take one moment with him for granted.

Last night we called the volunteer that assists Erik at church and expressed our desire to attend services this morning. I plan on sitting and tapping into the energy from the congregation around me. As much as I shrink from people, I am slowly realizing the value in drawing strength from them. As the music fills the room and conducts through every cell of my body like electricity, I am going to pray harder than I have ever prayed in my life.

In the meantime, as it seems as if the WS world is crashing down around many of us, I will light a candles to glow in the dimness of this wee hour of morning.

I will light one for Blake, who is lying in a hospital on a breathing tube fighting for his very life. His mother has been told he may have brain damage from this agonizing fight and that she may need to make some tough decisions soon.

I will light one for Ava Jewel, who is also in the middle of fighting for her life in a hospital bed under her amazing mother's watch.

I will light one for Abi, who has an upcoming surgery.

I will light one for Ava, who has just been released from the hospital and is recovering from a serious illness that threatened to shut down her organs and stole her appetite.

I will light one for beautiful Michaela, who has been discovered to have a tumor on her brain and other abnormalities on her recent MRI.

And I will light one for the rest of our children with WS who fight what comes with anxiety, autism, and the little bodies and brains that sometimes don't work exactly they way they should. For their parents and the rest of their families. For strength. For many more moments of continued happiness with these incredible children, knowing these moments are miracles and were never guaranteed to be ours for any length of time to begin with. I have never been so incredibly sad and so deeply thankful at the same time.

I'm seeing the big picture now for the very first time.

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Monday, February 04, 2008

Squeaky Wheel

Did I do that?

-- Steve Urkel (Family Matters)

Barbara, the local author I mentioned earlier, invited me and Erik for a visit at her home this week. Unfortunately, she e-mailed me today informing me that she has a terrible cold, so we will not be going out to see her Wednesday morning after all. However, she reported that there is now a volunteer at our church who is eager to help out "in any special way" during one of our Sunday services. She assured me that we can call in advance to make arrangements if we want to attend church and that this woman is available to other special needs families as well. I'm encouraged but a bit perplexed as to why we never got an actual phone call from the office to let us know. Maybe that is coming. After the deafening silence over the last few months, though, you won't see me waiting by the phone anymore. I'm tired of feeling foolish and getting my hopes up. I still can't help but feel optimistic, as wounded and angry as I have felt lately. In the end, it really does not take a whole lot to make me happy. If someone even pretends to care these days, I'm happy.

As the two-year anniversary of our diagnosis approaches and Erik changes by the second, I find myself facing reality in a brand new way. Right now I feel uneasy and off balance. Erik and I have great days separated by a day here and there during which he is equally uneasy and upset. These are days we just don't connect at all. If I hang on long enough, I will feel his arms around my neck and his choppy giggles in my ear again. We visit the orthotist tomorrow to have his orthotics checked to make sure they are not cutting off the blood supply to his feet during this amazing growth spurt of his.

Today I spotted a Goodwill truck by the side of the road with its back end gaping open, ready to swallow donations. I glanced in my rearview mirror and saw the top of the impressive collection of now ill-fitting clothes of mine and toys Erik has no use for piled in the back of my car. I made a split-minute decision, signaling at the last minute like a complete jackass, jerking the wheel as sharply as I could without sliding on the ice to round the corner into the parking lot to an unoccupied patch of snow behind the truck. A middle-aged man in clothing much too light for the weather conditions appeared from the darkness inside the truck's boxy interior and said a quick hello. His cheeks were reddened from what I guessed was a result of the harsh wind and tiny snakes of broken capillaries hinting at a past history of drinking a little too much. I quietly emptied the back of my Jeep, accepted my receipt with a smile, and got back into my seat behind the wheel. I began to drive past the glossy side of the truck which proclaimed, "Your Donation Changes Lives" in giant, white letters. Below this, a man with the familiar features of Down syndrome was pictured hugging a larger, fatherly man very tightly. They both grinned from ear to ear as if they had just enjoyed a silent joke or found out they won the lottery.

I pressed my toes gently against the gas pedal and felt my eyes begin to sting. My heart suddenly hurt. In fact, it felt as if it would split wide open. The ferocity of the pain was almost unbearable. I frowned and slipped my dark glasses on, feeling completely blindsided.

Oh no. Not fair.

You found out your son had a disability almost two years ago.

The reality of it all is crashing down on me like never before. Last year I learned to live with the two words that changed my life that day at the children's hospital in March 2006. I am now completely comfortable with the actual words and the set of words that tends to come with them, at least when I use them around friends and family. I can usually read them on a page or a computer screen without much emotion whatsoever. I thought I was an expert at this.

This year brings another unexpected lesson. Facing what those words really mean to Erik and our family. When I do sleep now, my dreams are strange. They are filled with images of myself as a disabled child being tortured, ridiculed, and teased on a playground. Last night I found myself in another dream wandering the halls of a giant luxury hotel that had no exit, lost and completely alone. I passed numbered rows of locked, slab-like doors as my feet sunk into thick, soft carpet. In the one I had last night, I was in high school, stricken with a nonspecific but horrible disability but keenly aware of my surroundings. I overheard sharp, cruel words pertaining to me and bubbly giggles percolating through a closed door in front of where I stood. I threw the door open and confronted a pair of teenage girls, feeling angry and violent. The last thing I remember before I awoke was staring into their eyes, large as saucers and full of shock. Erik is absent from each of these strange visions, but I know they are all about him and my role as a mother, anyway. It is probably too painful for my brain to place the actual image of Erik in any of them. I am certain that with the passage of time, they will fade, at least for the most part. This is just another step in the process. This year will bring more encounters with people who have WS. Last year I couldn't bring myself to even talk to an adult with WS. I could only manage to shake the strange, seemingly prematurely aged hand of one woman and turn to walk away like a coward. This year I hope I will have the courage and the strength to accept what all of the words I have learned really mean.

This year I hope to gather enough courage to speak. Even the courage to "squeak." This year I want to use the words I have learned with grace in a group of strangers if I have the desire to speak about my child.

This year I hope to stop turning away.

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Friday, January 25, 2008

New Dreams

There are some things that I will never have the opportunity to do as a mother. I spent the last two years digesting each of those losses like little deaths, and they have all hit home now. The moment we were diagnosed, I could almost hear hundreds of doors slamming shut. Opportunities ripped from me. Dreams destroyed.

However, I accept the fact that I will likely never jump up and down in a set of bleachers cheering for a son who is the quarterback of his high school's football team. He will likely never play on a football team at all. I accept the fact that I will likely never take him to the DMV to get his driver's license. I accept the fact that I will never have the opportunity to watch my son graduate from medical school. I accept the fact that I will likely never attend his wedding or have a daughter-in-law. Lastly, I am very slowly learning to accept the fact that I will likely live my entire life without being somebody's grandmother.

However, as I have watched Erik grow, I have witnessed him flinging doors open on his own, touching the people around him in a way I would never imagine was possible. He received two pieces of mail in one day this week. That's pretty decent for a kid who is only 3. He loves animals and is amazing with them. He loves music and seems to have the budding desire to create it himself. He still occasionally goes into a deliriously happy trance when he sings a new song. This week he began singing "Deep in the Heart of Texas" and "Old Suzanna."

Slowly but surely, my dreams for the future are once again materializing in different forms. I visited You Tube yesterday and searched for videos on Williams syndrome. Two years ago, I saw only my personal videos posted on this subject. Now I see familiar faces with button noses and gorgeous eyes like Erik's. When I find a new video, I feel like jumping for joy. Yesterday I discovered this video of a young man who can drum up a storm. While I watched him perform, I realized I was less focused on his incredible talent and more transfixed by the joyous "woo hooing" in the background.

It was then that I suddenly had a little realization of my own.

No matter what Erik decides to do with his life, it is very likely I will have an opportunity to stand up in a crowd and cheer after all. My son has a chance to do things typical children find amazing. He has a chance to follow his own dreams and will likely need to work twice as hard as other children to accomplish them. I have all of the faith in the world in him and know he will blaze his own trail to happiness. The future is one big unknown for Erik Quinn.

I now know one thing for sure. And I'm certain it's true.

Moms like me get to "WOO HOO," too.



Thanks, Devin, for sharing your talent with the world and providing our family with another hero of our own.

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Thursday, January 10, 2008

Self-Examination

Erik and I spent the morning making brownies from a Weight Watchers recipe (with a mixture of Kashi soy cereal, butter, and powdered sugar on top, which he immediately plucked off, put to the side of his plate, and said, "Put away!") and playing with dishes in the kitchen sink, creating a massive flood on my floor.

I still feel really off today.

Erik's appointment went fairly well. Today was the first appointment I didn't feel like Brian needed to go with us for any sort of education or support. There is no longer any point. Unfortunately, this doesn't make it easy. I dressed Erik in a pair of good jeans without holes in the knees, a nice shirt, and a denim jacket, skipping his plastic leg orthotics in lieu of socks and his black suede Vans. I figured there was no point in sticking out any more than we would, anyway, in the waiting room. We checked in, and Erik smiled at the girl at the desk, telling her that he was going to see the doctor. We took over a seat in the large waiting room next to a playground-sized jungle gym type setup and waited. The other kids ran in bee-like swarms, whizzing past us and missing us by centimeters on nimble legs, seemingly failing to notice our presence at all. Suddenly I felt like Jane Goodall, peeking in on another foreign world through a layer of jungle foilage. I felt a rush of adrenaline enter my bloodstream as I glanced around the room, stirring up hot, poorly directed fury at the other parents with perfectly typical children. I let the emotions wash over me and enjoyed the evil heat of them for once in a public setting. I felt angry and high.

I noted all day that Erik experimented with sound. He repeatedly clapped his palms over his ears to listen to the radio, the television, and my voice, asking me to repeat certain sounds or phrases. In the waiting room this continued, only he kept his hands sealed firmly over the openings of his ears to block the sounds coming from the other children in the room. He laid across my lap, stiff and motionless like a pale bundle of kindling. I tried to reposition him so he could at least watch the other children playing in the room, but upon being lifted into the air, his legs stuck out perfectly to the sides like metal prongs and then quickly wrapped around my chest. I felt frustrated and annoyed. He clung to me like a parasite and refused to move. He simply buried his face in my neck the remainder of our time there. A father stared with me with eyes the color of molasses as his wife spoke fussed with a baby in a car seat, and an adorable collection of bundled-up newborns were carried in from the wet afternoon by their shockingly young mothers. I smiled at them but felt my stomach turn.

A nurse propped the metal door with her small tennis shoe and called out Erik's name. I pried him off of me, and we walked slowly through the doorway into the nurses' area. We tried to stand Erik on the scale, but he promptly began wailing, his face transforming that familiar ruby red. We finally resorted to sitting him on a layer of tissue paper on the infant scale. Stiff and screaming, he weighed 32 lbs, 9 oz. He absolutely refused to stand against the wall to be measured for height, even though I made a complete ass of myself measuring the length of my own body. The blood pressure measurement turned out to be a complete disaster. I began wondering why we were in this place at all.

We were escorted to a room where we answered a myriad of questions about milestones. Thankfully, I no longer need to answer them all negatively. Yes, Erik can jump. He can speak in short sentences. He eats protein. He drinks milk. He sleeps well. He knows the names for things. He can count to 5. In fact, he can count to 20 if he wants to. Yes, he eats a very minimal amount of fast food. He is fond of the seven-layer burrito at Taco Bell. For the first time I felt like I appeared like a healthy, put-together mother who slept regularly. Although I was on edge in this place, I smiled. I have come a long way in a year. As she went to inform the doctor we were ready for her, I pulled out my cell phone and played the new Britney Spears song Erik loves and I detest. He asked me to play it again and again. I obliged him and laughed as he said, "Again! Again!"

Dr. G came into the room and greeted us. She said she was thinking of us recently and was delighted to see us on the schedule. After some initial pleasantries, she attempted to examine Erik's ears and listen to his heart and lungs with her sthetoscope. If she did glean any information from this brief examination, it would be miraculous indeed. He absolutely refused to let her touch him, despite an impresive offering of stickers, which Erik doesn't know what to do with, sweet talk, and her own examination of my own heart, lungs, and ears. The good news is that I am completely healthy and do not have any variety of otitis media or a heart murmur. We did manage to get Erik's pants off and his diaper unfastened enough to examine his manly bits, which were reportedly fine. He continued to wail the entire time.

Once the screaming subsided and Erik began carefully examining the lights in the ceiling and the floor vents, which seem to blast air the temperature of the deepest level of hell, I asked about an orthopedist, and she began filling out paperwork to refer us to a pediatric rehabilitation physician in town. She asked about Erik's hippotherapy and if I was frightened to see him on a horse. I laughed loudly and immediately answered no. It always surprises me that even most physicians don't really have a grasp of what my life is like. I told her to recommend our physical therapist to other parents, and she took notes. The nurse returned with a fistful of Erik's immunizations, and I held his struggling body down while she deftly stabbed his muscular thigh with the loaded needles. Overall, I was impressed by her speed and technique, and she was impressed by Erik's brute strength. As we packed up to leave, she mentioned the other person in town who has WS, now an adult, and how beautiful the starbursts in her eyes are. When she realized I knew of this person, she looked slightly alarmed and said she could not disclose any more information because of a potential HIPAA violation. The trouble is, there aren't other people like Erik in this region. I informed her I knew whom she spoke of and that we had yet to meet but that I knew she was doing quite well. As we left, Erik began to wail again, upset that he could not examine things on the way out. As I reminded the nurse to update our immunization card over the screaming, she commented to me how patient I was and what a great job I was doing with my child. I felt like laughing, crying, and bitch slapping her at the same time. I said goodbye as she held the door open for our departure and next poor pediatric patient.

I came home, sat Erik in his chair with a giant sugar cookie and a serving of our freshly-baked brownies, and poured myself a generous whiskey and Diet 7-Up, refreshing it just halfway through. I ruffled his hair as he quietly munched on his treat. Wet snowflakes began smacking the ground outside the kitchen window, and the sky blackened.

I smiled and felt the alcohol enter my bloodstream, numbing everything I felt earlier.

Our next appointment at the pediatric clinic would occur in 2009, as Erik turns 5.

Thank God.

There is simply not enough whiskey or sugar cookies in this world.

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Tuesday, December 11, 2007

Shush

I have a moment to myself before the morning routine begins.

Work is very light this week, which means I have had a lot of time to think. This probably isn't a good thing. A bored Nancy is a dangerous Nancy, indeed. However, I am enjoying my time off and am almost ready for Christmas. If all goes as planned, we will have a house full of people. It has been nearly two years since I have seen my brother and his wife, and I am beyond excited for them to see Erik as a toddler. He was an adorable little blob when they saw him last.

My thoughts --

I'm terrified of gaining all of the weight I lost back, although I have been successfully keeping it off and remain in my new dress size. I haven't been this size since college. My wedding dress is even too big. It was a complete surprise to me that keeping weight off is far more difficult than losing it. Thankfully, I have the tools on line to keep a food journal and can tweak my diet accordingly to keep myself on track. I am still working out daily and plan on continuing this habit forever. My fears seem silly now that I type about them, but I can't express how much I never want to go back to the way I was ever again. My neighbor and I went out on Saturday to the local tavern to play video poker and hang out with some of her friends, and they were all very sweet to me in terms of what I have accomplished. Moments like these help me realize how hard I have worked and how far I have come. I was shocked to see that I now have those freaky, bulging muscles on my shins my mother has always had.

As for the girl I am inside, I would love to evict her sometimes. Lately I have become more closed in terms of sharing my emotions because I no longer want to expose them to the light for all to see. Keeping an online journal is difficult, and after a while I find myself saying the same things over and over. I can only imagine how crazy my readers think I am. At least you all are too polite to say anything. I made a promise to myself to keep going at least until the two-year mark next spring. I have nearly 400 posts now. Can you believe it? I can feel myself approaching my limit, though, in terms of opening the door and making myself vulnerable on an almost daily basis. Looking back, I'm amazed at what has come out here and the sheer volume of what I have said. I am just getting to the point where I don't want to talk about me anymore. If you read this, you know me pretty well.

In short, I have finally come to the shocking conclusion that I will never "get over" the fact my son is mentally retarded. Ever. Don't get me wrong -- I love him for who he is. I understand almost everything about him and believe I have accepted what my reality is now. I have been told by others that someday I won't want to change anything about him. I smile at this but deep inside I fight the urge to let my fist fly out and shatter their noses. Even if this were true, I don't want to hear it, especially from someone with a typical child. The fact is, I hate WS because I don't want my kid to suffer. To be ridiculed. To be different. Pure and simple. Yesterday he smiled at me, and my heart simply melted. He gets cuter and cuter every day. I love his laugh, the way he wraps his arms around my neck, and his raspy baby breath in my ear. I love the way he comes up to me and announces the names of construction equipment with so much panache (KOMATSU! SKID STEER! TRACK EXCAVATOR!). He is different, pure and simple, from other children. I am simply mourning the fact I will likely never become a grandmother or watch my son actually enjoy himself on a playground. There is a lot of fun I will never get to experience, and it pisses me off. There is just no other way to say it: This sucks a lot of the time.

It has taken me almost two years to get to this point, and I feel horrible for those on this path behind me who just began their own journeys. So much for wisdom from this source. Barbara, my new author-friend, told me that the pain inside will never fade completely. I will just learn to live with it and need to find things that bring me joy or an outlet for my pain. I have very succcessfully learned to live with what's inside my heart and mind on a day-by-day basis. I guess I'm getting to a point where I don't want the pain to have a voice anymore. I just want it to shut up and sit in the back row so I don't have to listen to it. That's a real step forward for me. There are a lot of other things going on in my brain that are more important that I need to deal with. Things like how to keep the dinner I made from bursting into flames in the pan in front of me. How much gas is required in the car to get me and Erik across town to school in the morning. How to successfully remove a curry stain from my shirt sleeve. Things like that.

Now that I read back over what I wrote, it doesn't seem as negative as I thought it would. I'm getting to a point where I don't want to talk about it because I have talked it to death. I can see that the next step is to find a balance between thinking about WS constantly and shoving it down inside of me only to have it bite me in the ass emotinoally at a later date. Neither is good, in my opinion.

So there you have it. My state of mind. December is probably the worst month of the year for me emotionally. My least favorite holiday is New Year's Eve. If I can get to January 1st, I'm always golden. I'm almost there. While I look forward to celebrating Christmas, I'm really looking forward to 2008 and beginning a brand new chapter.

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Sunday, December 02, 2007

Pendulum

I am having a bad day. Not just sort of bad. Really bad. The kind of day when my grief feels fresh, cutting me open from the inside as if I had not been feeling it until this very moment. The kind that leaves me so weak I have no desire to fight the forces of gravity and want to sag to the ground in a pathetic heap. The kind of grief you might see on the faces of the women in exotic countries wailing on the evening news after a devastating loss. When I am ready, I may write about it. I haven't had a day like this in a long time.

Today I came home from a failed attempt to attend church with my family and began frantically scrubbing the insides of my house like a crazy woman. I scrubbed and scrubbed with various sponges and cleansers, trying to wash the darkness I feel down the drain. The tree has been lit, and its 1800 white lights are sparkling. My pine-scented candle is casting a warm glow on my precious set of antique wise men. My toilet bowls are bleached. My floor is pristine.

In my quest to create the perfect holiday home for our son, I have come to the realization I was wrong. You see, it is ME who is in desperate need a safe haven from the outside world, at least at this point in time. Some place I can feel what I want to feel or, in this case, not feel anything at all until I'm ready.

I am progressively more and more uninterested in dealing with how I feel. When I write, I have to feel everything all over again, and, well, that simply sucks. There are times I simply don't want to feel anything painful or profound at all. Times when I want to plod along and do mundane household chores without a thought in my head at all. Thankfully, I can do that here.

Unfortunately, there is nothing left for me to scrub or straighten.

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Monday, October 29, 2007

The Basic Principles of Wound Healing

Healing from any wound isn't a pretty process, and it certainly doesn't happen overnight. After the initial insult, a good cut usually bleeds for a time. Hemostasis, or ceasing the flow of blood, is best achieved by directing attention to the wound and applying direct pressure. Most of us would then apply a clean bandage to a cut until it heals, not giving a second thought to the miraculous process occurring underneath the sterile dressing.

In my own opinion, my grieving has been similar. There was the initial wound afflicted by a panel of genetic experts in a stuffy examination room filled with ancient toys at a children's hospital. There were some tears that found their way through a thick fog of shock on the drive home, and I pretty much bled saltwater for months after that. I learned to care for my wound, hiding it from the outside world and keeping it protected from words or situations that would inflame or reopen it, disrupting the healing. Slowly but surely, healing occurred, but I had to care for my wound daily. Ignoring it only made it more infected eventually, even if it seemed fine for a few days. It is still a little tender at times, and, although my skin is much thicker than it used to be, I still avoid situations that may cause irritation. Am I afraid of pain? No. Taking a detour now and then to avoid it just makes life easier for me, and I choose not to torture myself by doing something that causes me more stress. As time passes, I find myself more able and ready to attempt things I once avoided.

I knew the initial stage of the healing process was complete the day I came out of early intervention parent group without tears on my face or acid in my stomach. Instead, I found myself walking calmly out into the fresh air holding two phone numbers -- one for a local salon that did pedicures and one for a spa where I could get my eyebrows waxed.

Oh, yes. I was going to be just fine.

I have always been half tomboy, half girly-girl. The tomboy half of me likes to have dirty, scarred hands for practical purposes and shrinks from the thought of having my ivory flesh kneaded like bread dough on a massage table or having my toenails painted with high-gloss polish. The girly-girl half of me desperately desires these things but has settled for whatever she can sneak by the tomboy half, which isn't much. My fingernails are painted occasionally, and I now almost always wear crimson toenail polish. Since I had Erik, I was coaxed into having my very first full-body massage, which was a little disturbing but something I would definitely do again. I take more bubble baths now in the giant, jetted tub that sat collecting dust for months after we moved into this house. The tomboy half of me has been my boot camp instructor. She has screamed at me to get up and face my fears when I felt like lying down and giving up. Now that I have gotten up, it's the girly-girl half who is just as persistent, telling me it's time to shine. She was the one who applied my lipstick every day, despite the fact the rest of me looked like death, as my tomboy half shoved me out the door to appointments with a basket full of unhappy baby. I need both halves, but these days, the tomboy side of me has relaxed a bit and let girly-girl take over.

This month I suddenly decided my eyebrows make me resemble Abe Vigoda. I dug the phone number I had scored from parent group out of the bowels of my purse and set up an appointment with Judy, another special needs mother who has her own business at her home. If my memory serves me correctly, I was told in parent group that her 16-year-old daughter has lissencephaly, a malformation of the brain that causes its surface to be smooth instead of convoluted. This often results in severe mental retardation, seizures, and poor control of movement. Her daughter lives in a hospital facility almost three hours away and apparently will be there for the remainder of her life. Judy spends half of her time in a rented room in the city near her daughter and half of her time here in town, tending to her son and her flourishing waxing/facial business.

The day of my appointment I dropped Erik at school, ran home to print out some correspondence I had transcribed for the ophthalmology offices, and printed out directions to find this little salon. It ended up being located in one of my favorite older neighborhoods in town filled with beautiful ranch-style homes and towering pine trees with ancient, fat trunks. I located the house but was early, so I drove to a nearby park, sat in my Jeep, and watched the leaves fall from the trees, spiraling through the morning sunlight. They were as big as my hand and slapped wetly against the hood of my vehicle. The ones that fell to the asphalt became almost transparent, like damp tissue paper. I glanced at my cell phone for the time and drove slowly back to the house, finding my way up the long driveway and parking in front of the garage. I followed a politely-worded sign and walked around the corner to find a tiny cottage with filmy, white curtains covering windows and French doors. Judy was making her way to the door at the same time, and we introduced ourselves. She ushered me in and showed me where to set my things on a wooden chair in the corner. She already knew I was a special needs mother, and she asked me about Erik's condition. She was familiar with WS but was surprised to learn about the intense anxiety that often accompanies it and Erik's own difficulties being in groups of other children. Most people tend to assume that kids with WS are always friendly and unafraid, as the social aspect of the syndrome is the focus of most articles. From what I understand, the social needs of people with WS stem from anxiety and the need to connect with others to calm themselves and gain acceptance.

She placed a thick towel at the foot of the bed in the small room for my feet and instructed me to lie down. The bed was heated and seemed to hug the contours of my back, and I instantly felt my muscles relax. There was only the sound of our voices in the small room. I was surrounded by the light filtering through the sheer curtains and romantic decor, including vases of dried flowers and shelves of skin treatments in pretty packaging. She began to talk about her daughter, and it was apparent to me that although she was open to voicing her opinion on this subject, she was likely being more honest than usual with me. She told me of women who couldn't understand why she tortured herself by spending time at the hospital every other week and how it would be best to "let go" of her daughter, as if she had passed away. I sensed the anger in her voice as she explained these same woman had children and were in the middle of activities such as happily carting them off to soccer practice at the same time they gave her this advice. Another mother once responded to her fears that people would never accept from her daughter by telling her that her child would always be accepted in her surroundings if she was dressed in cute clothing and was clean. As this was something she could control, she made it her mission to travel to the hospital, lay out her clothing for the days she was not there to dress her, and assured that her hygiene was taken care of. She explained that this was something she could do as a mother and felt it was important. I marveled out loud at how strong she was. Growing up here, I knew how limited services must have been at the time that she and her daughter needed them. She sat in parent group, too, but it was much smaller, as there were only seven families enrolled in early intervention just over 10 years ago.

She painted smurf-colored wax around my brows and began the hair removal process. I was told to shut my eyes to prevent my eyelashes from becoming trapped in the hardening goo. I listened to her voice as the anger in it subsided. I heard a hint of exhaustion take its place, and I caught the faint scent of nicotine on her breath. She affixed strips of muslin to my brow over the wax and efficiently yanked them off. The girly-girl half of me nodded knowingly and smiled while the tomboy half of me yelled "Hoorah!" I was allowed to grip a hand-held mirror to inspect the beautiful damage. Instead of Abe Vigoda, I saw myself--only with movie star eyebrows. She then took a tiny, plastic comb that looked like something Barbie would use on her glossy nylon locks and combed my brows straight up.

Oh. My. Gawd.

It was at this point I squealed out loud. Abe Vigoda was back. Please, lady, DO SOMETHING! After marveling at how thick and luscious my facial hair was, something I hope to never hear again, she expertly trimmed my long-neglected brows and I was back to looking like a movie star again (and not of the Planet of the Apes variety).

She told me to sit up slowly and fluff my hair back into its usual style. She called me gorgeous, and I tipped her, telling her I'd see her again in a couple of months.

Unfortunately, by the time Brian got home from work, both of my eyelids were bruised, and I resembled George Foreman after a nasty fight. However, by the next morning, I was back to looking more like Marlene Dietrich again. Although I'll probably stick to mostly pedicures from here on out, I have no doubt girly-girl will lead me back to that little cottage for some tender, loving hair removal from time to time.

Why not?

At this point, I'm a freaking healing expert.

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Thursday, October 18, 2007

Pearls

The house is filled with the rich, sweet scent of turtle brownies baking. I finally had a chance to bake some for Jeff, the bus driver. I will enclose one of my homemade information cards on Williams syndrome so he will finally know the reason Erik rides his bus. I rarely find a natural, comfortable opportunity to share information about what makes Erik different, so I am learning to create my own ways to accomplish this, preferably after a person gets to know Erik for who he is. In this case, I figure the guy might be curious and should know, since he provides care for my son. Erik calls Jeff the "screwdriver."

School + Bus + Driver = Screwdriver.

Makes perfect sense to me.

When they pulled up to the house on Tuesday, I saw Erik's blond head pop up behind the steering wheel. Jeff taught him how to press the button that would open the door for me. Of course, there was a great deal of horn honking as well.

Erik is doing great. This is going to be a magical year for him, if what I have read in the WS literature rings true. He sang all of "Twinkle Twinkle Little Star" several times at dinner at various tempos last night while Brian and I stared at him wide-eyed, and he showed me where Stinky Dog's tail was this morning ("Here's tail!"). He works out with me more and more each morning like a tiny personal trainer, telling me to "Lift leg!" and "Reach!" His heart is on his sleeve these days about the people he sees or misses. If he sees vehicles that resemble the ones friends or family members drive, he begins talking about them, craning his neck from his car seat to see if they are inside when he used to sit and drool, unaware of the world outside the car. He knows the difference between a Subaru and a Ford. He is becoming more emotional, and there are now more obvious reasons behind his actions instead of just mysterious, hysterical reactions for us to decipher. He tried unsuccessfully to fight off tears when I left him at class this morning. He tells me he is glad to see me and that he missed me.

I dropped off the collection of baby things I mentioned earlier that has been sitting in the back of my Jeep. I said a quick prayer about this, as I wasn't sure how it would feel. As I carried the baby bathtub and several diaper boxes full of clothing to the back of the Goodwill truck, a passerby spotted my donations and asked, "How old is the baby now?" Surprised, I set my things down at the back of the truck and announced that he was 3. I smiled as I turned away. I felt nothing but proud. I remember how slowly the months ticked by during Erik's infancy, and time goes too fast now. No more counting months, weeks, days, minutes, or agonizing seconds, wishing for time to pass, waiting for things to get easier. I'm letting the past go. I need my strength for what lies ahead. The road ahead is going to be the most difficult one I have walked, but I'm ready for it. There are many mothers who have walked this exact path before.

I'm feeling fabulous these days not having to lug around an extra 35 pounds, and the dense brick of grief lodged in my skull that I described in my first posts feels even lighter. Sure, it's still incredibly heavy, but I'm accustomed to it now. It feels more like a natural extension of me, like one of my limbs, and less like a tumor or a foreign body inside of me like it used to. Even simple creatures like oysters learn how to make pearls out of the grains of sand that cruelly chafe at their delicate insides. There will likely always be grief, but I'm not drowning in it anymore. It's part of me, and it's important.

I believe I have come a long way since Erik was born in just about every way. I am still amazed that it's possible to feel this good again. In short, I'm myself again. I haven't really been me since I started this blog. I ran into Bev's (Erik's former therapist) friend at hippotherapy last week, and she told me how incredibly proud Bev was of me. My heart swelled when I heard that, because it has been a real struggle, but I'm making it, and people can see it now. I thought that this would be all about Erik, but I have gotten to know myself a lot better than I ever wanted to or imagined was possible. And now it's official...

I'm back, baby.

So standing at this fork in the road, I am unsure what to do next. I am now thinking about pouring this energy into some sort of book. However, there is so much story left to tell, so I'm torn.

In any event, I'm me again. I will never be the same, but it's clear that I'm not supposed to be.

What's important is that I'm me.

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Monday, October 01, 2007

Entombed

I entered the dusty guest room and moved the heavy nightstand blocking the attic storeroom door. I pulled the door open and flipped the light switch, scanning the room for fall decorations and items I might use to decorate for Erik's birthday party. To my right stood the bulky, frosting-pink box in which my wedding dress was sentenced to spend the remainder of its existence with the air professionally vacuumed out of each fiber of fluffy lace and meringue-like veil. Musty, tightly-coiled sleeping bags surrounded it like dusty snakes on guard. As I stepped deeper into the room, taking care not to hit my head on the sloping ceiling, my brain went absolutely blank. I suddenly and inexplicably could not recall why I was in the room. I smiled at my forgetfulness. As I scanned the room, I felt my smile fade. I had been in this room thousands of times but could suddenly visualize things I had never noticed before. My neat, serial killer style block print in black Sharpie marker very concisely announced the contents of an army of old diaper boxes sealed shut with glossy packing tape. Most contained preemie-sized baby clothing, swaddling blankets, and tiny caps. The large box my toe nestled against contained what remained of my collection of maternity clothing, including the flowing blouses and pin-striped, button-up shirts I wore over my swelling stomach to my old job. Sitting on top of all of this was a collection of things too bulky to fit in boxes or simply tossed there to wait for one of my manic cleaning episodes.

I inhaled a large amount of attic air and attempted to concentrate again on the stack of folding chairs to my left and birthday party planning. My eyes wandered against all neurological orders issued by my brain. I could only stare at the baby bathtub sitting atop a pile of boxes like an adorable shipwreck. I peeked inside and spotted a bag full of plastic baby bottles. I turned away and straightened my collection of boxes, thankful I couldn't see inside them. I stacked them along the wall out of the way. Amazingly, I caught myself stalling for time. I felt as if there was a monster behind me. How pathetic could I be? I just could not seem to control what was happening here.

Just what was happening here, anyway?

These items did not bring me joy or trigger anything remotely maternal. They reminded me of death. The death that occurred years ago now that not many could feel or even knew occurred. I only felt memories of dark nights and horrible pain. Even the Huggies boxes suddenly seemed like brightly-colored coffins. I felt a spurt of adrenaline issue from deep within my torso. As it dispersed, my heart and lungs began to labor as if I was walking uphill. Nausea twisted my stomach.

I automatically grabbed the blue plastic bathtub and began to fill it with loose items. The Baby Bjorn carrier. The Boppy covered with the word "baby" and cheerful cartoon bees. The diaper wipe warmer. I carried the tub out of the room and set it on the carpet. Going back into the storage space, I glanced around the room and felt relief. I looked at Erik's saucer toy and items he had recently outgrown. I felt nothing. I picked up the boxes containing the baby swing and the baby bouncer, but a wall of guilt kept me from carrying them out of the room. I stacked them with the other boxes, extinguished the light coming from the two bare light bulbs inside, and shut the door behind me. I moved the nightstand back into place, entombing the dusty items inside once again.

I carried everything outside into the dewy, fall morning to my Jeep and placed them in the back, ready to drop off when I passed a Goodwill donation station sometime in the next week. My pain, someone else's gain. The panic faded as I shoved the heavy hatch closed and heard it slam shut. My lungs filled with fresh air. I could breathe again.

I want to move on. I need to let go. I am going to bury this pain, little by little.

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Tuesday, August 21, 2007

Guilt

I can't speak for my son, my husband, any member of our families, or my friends. I speak for ME here. I will never intentionally pretend to know how anyone outside of this particular woman named Nancy is feeling.

Today I asked myself today why I continue to keep a web log. Something is changing.

The answer: I blog because it is socially expected that I smile sweetly in public when I feel like screaming, sobbing, or assaulting someone related to my emotions that stem from the horribly cruel birth defect that my beautiful son happens to have. I have very successfully put on a brave face through therapies and children's birthday parties and parent groups and doctors appointments and IFSP meetings when it was the last thing I felt like doing. I believe that I have jumped through the correct hoops at the correct times, and I have acted appropriately and ladylike. I have prayed the appropriate prayers, and I think I'm a pretty decent mother. I have been invited to be on boards and attend meetings outside of what is normally expected for a special needs parent. I don't believe I have embarrassed anyone. I have even kept my tears to a minimum lately in order to minimize any discomfort I may cause the people around me.

However, these emotions and thoughts have to go somewhere.

If you see me on the street, it is very possible that out of politeness and in the interest of saving your valuable time I may serve you up a white lie and report that life is a beautiful bowl of cherries when I feel like curling up in my closet under a blanket for the rest of the day. Thankfully, because I have this outlet, I get up and face this big, old world every glorious day. I'm not alone. I do this just like all of the mothers I know who wear similar shoes. If we didn't, we would be missing out on a lot of what is right and what is beautiful in each day. You just have to wade through some ugly to get there, and the right and the beautiful, as it turns out, are even more wonderful after that.

Unfortunately, a lot of what I say isn't pretty. It's not supposed to be.

When nobody knew I was writing here, I wrote anyway. At this point, there are more people reading my thoughts here than I would have ever imagined would have bothered with me. That's really frightening sometimes. The side effect of this is a new sense of shame and guilt when something un-pretty comes out of my head. I have come to love many of you who come here. Never in my wildest dreams did I imagine that would happen. All I can do is warn you that you will never hear lies from me here, and I hope that I do not upset someone with my own thoughts. I am not sure what to do with these new feelings besides making this journal completely private from this point forward. I'm not ready to do that. So I just issue the warning that this is my journal and these are my raw thoughts. They are true, and I want to put them down so that, God willing, I can look back on my life and see how far I have come as a mother. I am so incredibly lucky to be a mother.

Okay, at this point, Ted Kaczynski's manifesto was more succinct and made much more sense. What I'm trying to say is this: You are witnessing a woman grieve. You are seeing someone bleed gallons of sticky, copper-scented blood. You are watching someone heal twisted, ropy scars. Some of you have no idea what I'm feeling, but you come here anyway, and I always attempt to take you with me on this ride through my writing. In this sense, my blog has turned into something fabulous, because I never feel alone. Ever. There are those of you know exactly how I feel and have similar scars. Frankly, I am hurting right along with you, and, dammit, I truly believe many of us are making progress. It's not a pretty process. If it is, then something isn't quite right. That's my opinion.

This is the most incredibly personal thing I have ever dared to do, and it's only because of the wonderful feedback I have received that I have kept baring myself in a very public forum under a very bright spotlight. Much of what I write is happy, but much of it is not, and I will not apologize for it. That wouldn't be fair to the people who come here to read my true thoughts or to myself. There is poison inside of me, and when I write, I feel normal again. That's a pretty amazing gift in a life like mine. I have always grappled with my struggles through writing. After I am finished typing here at my desk, I am almost euphoric. I feel like I have just been violently ill but know I will not be sick again for some time. I then get up and go on with my daily life, and I am thankful for who I am and what I have. It is good. I am a fairly happy person on most days. I pray that you can feel the same emotions if they apply and can let them ebb and flow just like I do in order to heal and move on. I don't want to depress anyone or cause them sadness. Maybe I'm completely flattering myself, and I haven't made a dent in one single moment in one single day of one single life. You know what? I'm really completely okay with that. However, I have a knot in my stomach and would never want to hurt anyone with my words. This just needed to be said. If I'm doing more harm than good, I'm hanging it up and will continue to write--in private.

Whatever happens, thank you for loving me, scars and all.

By the way, I love you, too.

-- N

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Sunday, August 19, 2007

Breaking the Law of Averages

He came toddling out of his bathroom, deftly maneuvering around the toys strewn over the shiny floor in a way that would have made his therapists proud. In his strong hands was his little green and blue plastic stool. He rounded the kitchen island to where I worked and put the little step in front of my heavy, pistachio-colored mixer. Amazed at what he had just accomplished for the very first time on his own, I nudged the step with my toe a couple inches to where he could best see me work. He confidently planted his brace-sturdy foot and stepped up, grabbing the counter firmly and craning his neck to see over the rim of the shiny bowl. Almost. Not quite tall enough yet.

I read the article again today. My brain finally absorbed that one sentence. The one that stated that what is written on my child's chromosomes means his lifespan would be, on average, 50 years. From all I know now, this was not a surprise to me. However, seeing this in print written by a stranger made me inexplicably angry, which was a complete surprise to me. I suppose I had never dared ask anyone, even the geneticist, that particular question before because I didn't want to hear it. Now I had the answer, and I didn't want the damn thing.

I coaxed the sticky honey from the measuring cup with a rubber scraper, making a ridiculous show of it for his benefit, like Tom Cruise mixing drinks for the beach bunnies in that old movie. I found myself humming "Kokomo." I held the measuring cup high in the air and let the honey drip down like a thick, gold ribbon into the bowl. Up and down. Up and down. He laughed and said, "S'mixer!"

It's not like he has serious health problems yet. His upcoming echocardiogram will hopefully soothe my blooming fears. Hopefully. I hate not knowing exactly what missing an essential component in his body will mean as he ages. Looking at the big picture, I can see that we are the lucky ones. There are some beautiful kids with this who are very ill. I should be on my knees thanking God we have it so good! This kid could very well live to be one very friendly, old fellow.

I pushed the stubborn switch on the mixer to the right and watched the cage-like attachment whirl to life. The motor's growl made him jump at first. After that, he was very calm and interested. I stooped to pick him up in my arms and held him so he could watch the separate ingredients swirl into a thin, sweet mixture. After they were adequately combined, I put him back on his step and tipped my plastic bowl to sprinkle the dry ingredients into the sweet batter to thicken it.

Besides, even if he was "average," which he doesn't seem to be, that's half a century. If his kidneys or cardiovascular system did magically fail at that milestone, I'll be 84 years old. I might not even make it that long. Maybe we will both go at the same time, and I would never need to live a day without him. Living without him would be like living without my heart.

I unlocked the bowl from the body of the mixer and turned to spoon the batter into the mini muffin cups that glistened with nonstick spray under the kitchen lights. Erik traveled with me with his step to watch this and actually obeyed my instructions not to plunge his thick fingers into the batter for once. He just watched quietly and let me think.

God, I hope I never have to bury my son.

I opened the oven behind us, reminded him that it was very hot, and slid the wide baking pan full of cups of batter into the heat. The door shut with a clunk, and I pushed the button on the console to illuminate the oven's innards so he could watch the muffin tops grow dull and swell. Looking out the kitchen window, I saw his baby swing gyrating in the wind and rain as if it held a hyperactive ghost, and the little yellow straps that used to go around his tiny body hung limply. No more baby.

I'm almost 40 myself.

I returned the containers of dry ingredients to the baking cupboard above the oven and pushed a damp sponge across the counter tops, smudging tiny drifts of flour dust into drying, annoying swirls. I washed the sponge and began scrubbing again until they vanished. He lost interest in my new chore without any spinning equipment and disappeared, off to find another rainy day adventure.

Fifty's simply not good enough.

I slowly filled my lungs with the warm air of the kitchen and the undeniably cheerful scent of grated lemon peel. I flipped the lights off and followed him around the corner into the unknown.

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Saturday, July 21, 2007

Coping Mechanisms

Things I have done since yesterday --

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

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

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

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

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

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

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


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Friday, July 20, 2007

God's Hands

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

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

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

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

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

Stop!

God help me. Please.

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


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

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

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

Now I know the truth.

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

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

Stop. That's enough.

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

Stop.

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Thursday, May 31, 2007

Graduation

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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