Erik Quinn: The Heart of a Family: February 2008

Wednesday, February 27, 2008


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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Monday, February 25, 2008

Casting Call

This week we begin saying goodbye to the bilateral jointed AFOs (leg braces) Erik received on the weekend of his second birthday. I remember going to the store immediately after we received them and buying three tiny boxes containing cheap tennis shoes, hoping they would fit over the plastic that encased his foot. I had to tear the guts out of his shoes and throw them away, as there was no room for them to share with his feet inside. I remember how the ripping sound of the cheerfully-adorned Velcro on the AFOs caused him to recoil and begin sobbing. Putting them on and taking them off was torture to us all for a brief period of time, but they soon became part of Erik's daily routine and attire. Even part of his body. I soon learned while holding him on my lap to avoid allowing one of my digits to stray into the vacant space in the open joint above his heel when his foot was flexed in the event he unflexed, causing the plastic parts to suddenly snap shut like a clamshell, stamping a white, bloodless dent in one of my fingers while I screamed and tried to free my trapped phalange. The braces generated unwanted questions from adults and children alike that I never really learned to be comfortable answering.

It was all worth it.

He underwent a complete personality change that weekend, seemingly overnight. He learned to sprint with them on up and down beaches and climb stairs. When Erik was in his braces, I used to call him my Imperial Stormtrooper, and my folks and I occasionally hummed the Stormtrooper theme from Star Wars as he stomped around, because looking at the back of his plastic-encased legs completely reminded me of those costumes.

In the end, what seemed so traumatic and called unwanted attention to my baby back then quickly became something I grew to appreciate, as they stabilized him to explore the world and allow him to concentrate on developing his personality. They became virtually invisible to all of us. Photos of him wearing them still seem shocking, as their presence is somehow revealed to us through them.

Wednesday I take Erik back yet again to the orthotist, a visibly nervous but incredibly kind man with a dazzling, wide smile and a shockingly shiny head, the top of which my nose almost touches as I hold Erik on my lap and he leans over us to cast Erik. Casting was nothing short of a disaster for Erik in the past. The screaming saw that the orthotist used to bite through the plaster was deafening and terrifying to Erik. The jeans I wore the first time still have the invisible but raised lacy, waffle-like stamp of one of the wet leg casts that kicked against me as we held him down. When I wear these pants, I find myself running my fingers over my thigh as if I am stroking the contours of a scar from an ancient, deep wound that only I know is present.

Erik graduates from his jointed AFOs this week to slimmed-down ones that no longer encase his calves. I will wrap up the old ones and put them in the sturdy blue box to rest in the company of his baby blue pacifier, crayon love notes from his cousins, and the tattered leather moccasins that once protected his fragile toes which became bloody from crawling before he finally took his first steps.

Who knows? Maybe they'll end up in the Smithsonian one day.

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Sunday, February 24, 2008


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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Saturday, February 23, 2008

Open House

Aquatic Demonstration with Children -- Warm water is an effective treatment tool for children with neuromuscular problems. This demonstration will be with a 3-year-old child who walks on his toes and has subsequently become stiff in his legs and his trunk. You will see how this new kind of "play" in the water relaxes his muscles and allows him to have increased range of movement.

-- From Local Physical Therapy Open House Brochure

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Friday, February 22, 2008

Diary of a Mad Cat

This is what appears before me when the door to the mud room is accidentally latched downstairs, restricting access to Gracie-Cat's food supply and her cat box (her food must be available at all times). This, of course, is after I have spent hours frantically transcribing countless medical progress reports during nap time and have gone between ignoring the ear-piercing feline screams from downstairs and hissing obscenities of my own back at her, trying not to wake Erik. If I am having an extraordinarily bad day, shoes are sometimes thrown in her general direction as the doctor I am listening to stops talking and takes a breath. If there is one thing you should know about medical transcriptionists, we tend to continue typing through anything to make a buck, including bladder fullness/incontinence, starvation, and raging fire. If the door is truly shut and she is not crying wolf, the hoarse meowing subsequently comes from beneath my chair. If I continue to ignore her and keep typing, she will sit atop my desk and stare at me until I throw my hands up in the air and respond.

She looks less than amused.

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Wednesday, February 20, 2008

I'm On a Mexican Radioooo

Fa the boulder!
Fa the boulder!

-- Erik's version of "Bob the Builder"

The last week has been wonderful, albeit extremely intense. I have spent a great deal of time with Erik with my work being slow and Brian being away working on a project nearly every day.

I asked Brian last night if he has noticed that Erik's budding language skills seem very different from other children. To my surprise, he admitted he has. Now that Erik has a lot to say and is discovering the language to express himself, I find myself fascinated by what occurs. I am unable to adequately explain this, but when Erik speaks, people sometimes freeze in their tracks.

The other day I decided I had cabin fever and that we needed to get out of the house. I loaded Erik in the Jeep and headed for the shopping center. When we arrived, I placed him in the cart and pushed him past the customer service counter. Erik turned his head, spotted a rather attractive woman working there, and loudly blurted, "Hi, sweetheart!" Being used to this now, I smiled and kept going. As we made our way across the store to enjoy the luxury of wandering the aisles with no time constraints, two teenage girls approached us from the opposite direction, deep in conversation. Erik straightened up in his seat and smiled his best smile. Just as they passed, he said, "Hi, girls!" They came to a sudden stop, seeming to be unsure at first where this booming voice came from. Giant smiles stretched across their fresh faces, and as my cart rounded the corner I heard one of them said, "Oh my gosh. How cute!" He went on to greet another man, and when this gentleman smiled and asked Erik how he was, Erik replied, "Good! Hallelujah!"

It's simply strange. One moment he protests and says a perfectly age-appropriate "No want it," or completely mangles the lyrics to a children's song, and the next he is spouting out phrases he has learned to use with perfect diction and inflection, following this up by suddenly belting out a perfect verse of "The Sun Will Come Out Tomorrow" without any warning whatsoever. He uses words and phrases I have never heard him use before. Yesterday a friend of mine carrying Erik around stopped in his tracks and asked if Erik could have possibly uttered a simple phrase in French. I laughed, unable to deny that he had. Sometimes it seems as if he is picking up some sort of radio station from airwaves far above us, as he can suddenly sound like a sports announcer, a surgeon, a professor, a television evangelist, a or a stand-up comedian. It's halfway spooky. There are even times I suspect he is channeling the spirits of some very interesting old characters.

The other day I took Erik outside to enjoy a very sunny afternoon. He has two tricycles, both of which he has refused to sit on and has screamed when we have tried to place him on them at all. He does enjoy pushing them around and watching the wheels turn. On this particular afternoon, I glanced up from the chair I was sitting in enjoying the warm sun just in time to witness him swing one leg over the thing and slide down into the seat for the very first time. I bit my bottom lip to prevent myself from releasing the two thousand decibel hooray I felt bubbling up from deep inside of me and scaring him half to death. As he began to propel himself forward with his little sneakers against the walkway, he mumbled to himself, and I was able to catch a few words.

As he pushed himself away, he said, "Here comes blue sky!"

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Wednesday, February 13, 2008


I took this photo of Erik eating breakfast in a real chair for the first time yesterday. Note the footie pajamas (Side Note: At what size do footie PJs become completely creepy?). I can't locate a suitable booster seat in this town to save my life and have resorted to using the phone book to jack him up a couple inches so he can at least visualize the contents of the bowl he eats from. His legs continue to lengthen. His toes tend to bore holes in the ends of his pajamas. I can hardly cram his swelling feet into his orthotics anymore. My baby is turning into an anemic-looking version of the Incredible Hulk. Since he isn't gaining much weight, he is still wearing size 2T pants, which fit around the waist perfectly but are completely inadequate lengthwise and tend to look a bit like tiny pairs of ladies' capris. There's a bright side to everything, though. He is ready to go wading in a nearby body of water at a moment's notice.

The last couple days have been better. Either I am adjusting to Erik's tantrum throwing or there are less of them. We are changing up our routines in the house a bit, and it seems to be calming him down in general. I just surprise him as much as possible. I called my mother yesterday and invited her to accompany us to the playground. The sky was the color of a robin's egg, and the temperature was springlike. I really wanted to do something special for Erik, but he ended up furious at me for interrupting his afternoon with such nonsense, and I ended up having to hold him down to get his coat on and get him to the car. I have learned to carry him mid tantrum to the Jeep in the garage at moments like these, strap him kicking and yelling into his seat, and offer him a piece of string cheese while I finish my last five minutes of getting my things together -- without a large boy hanging onto my leg who insists upon simultaneously assaulting me. Oh yes. I'm learning. By the time I get back out to the car, not only is the boy calm and ready to go, but he has consumed 25 percent of his daily recommended intake of calcium.

Each time we arrive at the playground, I suddenly remember why I don't normally go there. The parents can be incredibly rude. The kids cause Erik to freak out and cling to me, motionless, with his hands clapped tightly over his ears. We were able to convince him to climb up on the equipment a little bit, but he was really more interested in running through a crust of old snow over and over and plunging his hands into filthy puddles. Don't get me wrong -- I think he enjoyed himself, but it hardly seemed worth the trip (we have snow and mud puddles at home). There is always some degree of emotional hangover in me the next day as well. I thought that the playground would get easier, but it most definitely hasn't, especially with Erik's seemingly intensifying sensitivity to unfamiliar children and the noises they make. In fact, he appears more different than ever. I know that soon the other children and parents will likely ask me questions that will be difficult to answer, and I am putting that off as long as possible. For now, I love the special education bubble we live in, and it is hard for me to step outside of it anymore. That makes me smile in itself, as I was so uncomfortable with that world at the beginning of all of this. I don't ever want to leave the comfort of the bubble we live in, but that day is coming in less than two years.

For now, Erik and I are learning to fly.

Today Erik and I visited Barbara, my author-friend. The visit went well, but I don't feel like writing about it. It's strange telling someone I have only seen twice in my life my most personal thoughts. I drove away feeling like I had an open wound and needed to sit for a while to collect myself. Her baby girl had encephalitis 46 years ago, and it severely damaged her brain. It's very difficult to discover this woman still hurts. She does a beautiful job of covering it and directing her attention elsewhere, singing and creating works of art in her spare time. She is one of the strongest people I have ever met and lives life with gusto. However, the fact that I can see the choppy surface of that reservoir of pain in her just a millimeter under her smile terrifies me. It tells me that there's no going back to not hurting. Even half a century won't dry it up.

I'm feeling pretty numb right now just dealing with what's in front of me at any given moment and, on top of everything, have developed a horrible case of writer's block. That likely means I am doing well in general. We were able to attend church Sunday without any problems whatsoever, and Erik's caregivers made it very clear that he will quickly make himself very well known there. They enjoyed taking care of him, and a new staff member in the nursery actually requested time with Erik and expressed the genuine desire to get to know him. We have gone from receiving eye rolling and feeling as if we were being swept under the rug to feeling like we have celebrity status. In addition, we are gearing up for Sophie's Run 2008 in April (the 26th) and hope to share registration information with our friends and family soon.

For now, I am signing off for a while. I hate to take a predetermined amount of time off in case I feel like writing before then, but let's try a week. I'm still considering pulling the plug on this old blog at the two-year mark, but I'll wait until I get to that point and see if I still have things to say.

Besides, how can you miss me if I never go away?


Saturday, February 09, 2008


My meeting at the church went well. The two ladies were already there when I arrived, and the one I am less than comfortable with took Erik by the hand and left me alone with Marla, the woman who volunteered to assist our family on Sunday mornings. She was a middle-aged woman with kind eyes and blond hair that threatened to touch her shoulders but flipped up at the ends instead. She listened to all that I had to say about my concerns and frustrations, looking at me thoughtfully through her glasses and nodding when appropriate. I told her that I would like Erik to attend the class with the other children his age if possible. My new author-friend Barbara told me to share the 60 Minutes DVD on Williams syndrome with others to explain our situation, so I produced it from my purse and handed it to her. I expressed our desire to attend church just every other week to start, and she instructed me to call her on Saturday nights to make arrangements. After our meeting, the three of us walked Erik down to the nursery, which was empty, and Erik played with some toys, placing his hands over his ears from time to time when encountering something unfamiliar that could potentially emit a loud noise. When it was time to go, he melted down in the hallway once the ladies rounded the corner. I was forced to carry my kicking, protesting boy out the front doors over a sheet of ice to the car.

I would be lying if I said Erik's behavior was improving. His tolerance for frustration or being told no is virtually nonexistent. Toilet training is practically impossible, as he refuses almost everything I offer him or suggest. By Friday of this week, I was millimeters from tears all day. Brian and I have talked about our reaction to his actions, and we both agree that using time outs and/or ignoring inappropriate behaviors, depending on the situation, seems to work best, as he is simply seeking attention. The time I spent with him Friday consisted of mostly one consecutive tantrum. He has even begun slapping himself when he is frustrated, and watching him do this saddens me beyond belief. Telling him to stop, of course, only intensifies the behavior, as he wants a reaction from me.

This morning I awoke with a headache. I called Lisa, my neighbor, and took her up on a previous offer to visit a nearby salon for a pedicure and eyebrow waxing, even though my heart wasn't completely in it. By the time I prepared to leave, I found myself more enthusiastic about our outing. We arrived as the place opened. This was a pleasant turn of events, as wearing flip flops in 40-degree weather is not one of my favorite pastimes. We ordered deluxe pedicures with leg massage, choice of aromatherapy, and hot towel wrap, although I was concerned that going from such an incredibly tense state to one of pure relaxation could potentially cause me to wet my pants in a public setting. Unfortunately, I am so horribly tense that I didn't come close to achieving the level of relaxation I was anticipating. It was quite pleasant, however. I chose orange-scented bath salts for my feet, as the scent of citrus always lifts my spirits. We turned our massage chairs on high, and the short man with bulldog-like features waiting on me began massaging my feet. I enjoyed his friendly banter but was horrified by his complete and total honesty. My pedicure ended up costing an additional five dollars because he strongly suggested some sort of acid peel for the calluses on my feet. When he saw my fingernails, which I eventually forgot about hiding, he recoiled, suggested a manicure, and then changed his mind, stating that perhaps acrylic nails were the way to go for me. I told him I would let him take care of my hands at a later date, as the top of my thumb is currently missing as the result of an unfortunate onion slicing accident. This is what happens when one is half tomboy, half girly-girl, I suppose. Lisa, of course, giggled with glee at his observations about me. I received a minor chemical burn from acid splatter on the back of my right calf, but my feet are now softer than a baby's buttocks. I requested the usual crimson polish for my toes, and he carefully slid my flip flops back onto my feet over my glossy nails.

We were then escorted by a tiny woman wearing pink sweatpants and plastic, leopard print heels into a very messy back room in which there was a massage table with some less than clean towels lying across it. Lisa, a veteran at this particular establishment, stretched out on the table, and I stood behind the woman in the tiny space while she applied wax, pressed on strips of muslin, and ripped them off with glee. In fact, she turned to display what she had removed from Lisa's face and said, "OOOOOH! So hairy!" Lisa, not a quiet woman by any means, huffed and said that half of what was smeared across the strip was eye makeup, not hair. The woman giggled and shook her head. I laughed loudly. Revenge is sweet. When my turn came, the woman went to work, efficiently ripping the excess hair from above my eyebrows. I was thankful I had taken Excedrin for my headache before leaving the house, as the last time I had my eyebrows done, I looked like Rocky Balboa after a nasty fight within an hour of leaving another salon. We finished the afternoon at a seafood restaurant. I sat in front of a plate of fish and chips, not caring how many points I was consuming because my pounding head demanded something greasy tout de suite, and a cold, sweating glass of chardonnay poured from a box behind the bar.

Tomorrow's adventure: Church.

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Thursday, February 07, 2008

Oh God

The church office finally called. The woman on the phone was the exact person I was trying avoid speaking with about my problems, as I am highly uncomfortable with her, but it would have been a teensy bit awkward telling her that, so I put on my big girl pants and let it go. They have found Erik an aide for church services. The woman from the office and the volunteer will be meeting with us tomorrow morning at 9 a.m.

This whole process seems awfully difficult and stressful, and I want to just tell them to forget it, but I finally have results and could assist another family like ours by simply not going away. I'm very good at not going away. A quitter I am not.

It's worth a shot, anyway.

Today did not go especially well in general. Erik officially hates school and tells me he is not going the entire drive there. When we arrived, the street was so slick that at one point Erik was moving without actually moving his feet. He looked up at me, confused. By the time we made it to the front of the school, we had a panel of judges (teachers, aides, and bus drivers) critiquing our skating techniques. Erik apparently soaked his jeans around his diaper somehow at school, as he came home in his spare ones with urine-soaked britches in a plastic baggie in his backpack. I haven't begun toilet training, as he tells me no every time I bring it up, like everything else I suggest. We warred over lunch, naptime, not pounding on my computer keyboard, etc. I was a punching bag once again. He did sleep long enough that I got my work done so I won't have to work this evening. My head is pounding.

It might be a good idea to send me good vibes, say a prayer, or chant something appropriate in my honor tomorrow. I really would like to avoid making a complete ass of myself, smacking someone with the Old Testament, or, heaven forbid, crying in front of these women. I really, really don't want to cry.

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Wednesday, February 06, 2008

Slice of Life

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though
It all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

-- "Halleujah" Leonard Cohen (sung by K.D. Lang)

Yesterday went fairly well, although I collapsed at the end of it and was in bed by 7:30 with a headache and apparent exhaustion, as I couldn't keep my eyes open anymore. Does anybody know who was voted off the Biggest Loser last night?

Erik attempted to refuse to go to school yesterday. He yelled, "No school! No backpack! No!" I gave up on brushing his teeth, and he stomped his feet, slammed doors, and followed me around hitting me as hard as he dared. I couldn't help but think this was like spending a morning with Helen Keller at the beginning of her education, except Erik did a much better job of locating me and cursing at me than she probably ever could. After a time out failed to work, I began ignoring him at the point where I thought I was going to snap and stuff him into Gracie's car carrier in order to transport him to school. I took a deep breath and turned on the Today Show. In the middle of his outburst, K.D. Lang began to sing one of the most beautiful songs I have ever heard, an older song by Leonard Cohen called "Hallelujah," and Erik stopped in his tracks. He stared at her performance and was frozen the entire song. He was in a complete trance. I stopped what I was doing and sat on the floor behind him, putting my hand on his back to let him know I was there. He very slowly backed up without breaking his gaze and lowered himself onto my lap. It was a little moment of peace in our house, and it was wonderful.

After school, Erik was dropped off in our snowy driveway, and we made complete dorks of ourselves waving wildly at Jeff, the bus driver. We ate lunch and headed to the orthopedic building at the hospital. I drove there a few minutes early to catch my neighbor Lisa working at her coffee cart in the lobby. She dropped everything she was doing and gave Erik a tour of the lobby, including the impressive but silly manmade stream that begins with a waterfall cascading over a collection of manufactured boulders and travels the length of the registration area in a long, rocklike enclosure. The scent of wet pocket change and struggling algae brought back memories of a fountain in a mall we used to visit in the valley when I was a child.

Erik refused to ride the elevator to the second floor, so the three of us went up the stairs and found the orthotics office. Three men emerged from the back workshop as we entered to make small talk, and Lisa introduced Erik to the ones that don't know us, beaming with pride. She marveled at the wall lined with various orthotics, most of which look as if they are for sports injuries. The bottom shelf housed a collection of braces identical to Erik's with foam pads and straps in cheerful colors.

Lisa left us to tend to her customers, and Erik carjacked a toy monster truck from the waiting room to take into the back room with Jeff, the orthotist. Erik has not been in this room for almost a year and a half but knew exactly what had occurred here with the screaming saw used to remove the materials they used to cast his legs. He began to panic, but we convinced him to join us, and I pulled the legs of his sweats up and took his shoes off so Jeff could see how tiny his braces have become. I'm no expert, I told him, but I do believe Erik has outgrown his orthotics.

If there was any doubt in Jeff's mind that I was telling the truth, one look at Erik's long legs capped with the tiny, toddler-sized orthotics took care of that. He called Erik's PT to see if he still needs them, and she told him she would reevaluate him at our next session. In the meantime, Jeff replaced the Velcro enclosures around Erik's legs so they no longer come undone every 30 seconds, and we were free to go. I made Erik ride the elevator but held him in my arms and soothed him through the rude mechanical buzzes and dings that made him jump and bury his face in my shoulder.

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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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Sunday, February 03, 2008

Sneaky Chef Review #1

Our reactions to my own personal Sneaky Chef recipe cookoff so far --

"Brainy" Brownies

Nancy: A- (Hey! Surprisingly moist and delicious! Delightful!)

Erik: D- (Yeah, I'm THREE, not stupid. Woman, there's spinach in these, isn't there?)

Peanut Butter and Jelly Muffins

Nancy: B (Hey, these are good, although you have to chew them for two weeks before they dissolve.)

Erik: F (Oh no, you di-nnnt! Weren't the brownies foul enough?!)

I have dated each recipe accordingly with our grades and will try them again in approximately one year. I have successfully added two to three tablespoons of the orange puree to Kraft macaroni and cheese without him seeming to notice, but the kid won't eat the leftovers.


Saturday, February 02, 2008


I just woke up from a dream in which I had been arrested for an unknown offense and incarcerated at a women's correctional facility in a small cage at the top of a tall tower that swayed in the wind. The movement of my cell was so pronounced that motion sickness was a permanent ailment. I began to complain to a nearby guard that my stomach was really bothering me from being in the top cell of the tower and that I would like to be placed lower like the other women were. To my own horror, I then heard myself cave in, just as I always seem to do in reality, explaining that I was tough enough to handle it, even though I was screaming inside my own head that I felt like I would die there if something wasn't done.

I am now seriously considering canceling our appointment with the rehabilitation specialist. I asked Erik's private physical therapist, who was kneeling on the floor stretching my son like a happy little pretzel at that moment, what she thought of seeing this person, and she let out an obviously irritated snort from her nostrils in response, making me jump a little. She told me that Erik was "doing fine" and that seeing a developmental pediatrician in Portland instead might be a better idea. It was Erik's doctor who referred us to the rehab specialist, and I am now more confused than ever as to what to do. I no longer feel good about this new physician, and Erik's PT informed me that she just automatically refers children to our local hospital. This is not good news, as they are unable to help us at all unless there is some sort of heart-related problem that needs to be addressed. All I want is some reassurance that I am doing the right things for Erik medically, and I feel like I am being short changed.

The last time we set foot in the hospital in Portland was the day we were given our diagnosis. The geneticist seemed completely uninterested in seeing us ever again, and I can't seem to find exactly what we need on their website. I suppose this means I need to call the genetics department for guidance. I'm frustrated because I feel like I got steered in the completely wrong direction by Erik's own doctor. The fact that Erik's PT seems to detest the new physician here also doesn't make my decision making any easier. Erik's PT did say, though, that many parents with children with genetic deletion syndromes travel to Portland once a year to be seen. Maybe that's what we need to do.

In the meantime, Erik grows at the speed of a newly-rooted kudzu vine. My father pointed out how amazing it was that Erik's toes have shot past the end of the soles of the orthotics he wears on his lower legs, seemingly overnight. Although he has worn the braces for over a year now, his toe walking is more severe than ever, and if he doesn't wear braces, he is so jacked up that he practically falls on his adorable little face. His body has grown, too, and yesterday I witnessed him crashing into furniture, walls, and toys, tripping over his own appendages as if he had consumed four Long Island ice teas. He has always been cautious about moving about the house and has now sustained more injuries during this week than he has in three years. Erik's fine and gross motor skills have always been documented to be very poor, but this is completely a completely new low for him, making me wonder if he suddenly has more of his own body than he is used to carrying around. I just have this feeling in my gut that won't go away. He is changing in every way, seemingly by the second, and I want someone to tell me exactly what's going on medically as he grows at light speed and his body seems so tight. I don't want to hear "He's fine" and feel like an idiot for asking in the process.

I just want help for once when I ask for it. That's all. Is that so wrong?

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Friday, February 01, 2008

Clean Slate

I get to leave the house today, even if it is only to take Erik to physical therapy south of town. My parents will pick him up this afternoon, and he will be excited to see them both. If I don't have work, I will have time alone this afternoon.

I am off to work out and look forward to Erik running around me in his PJs saying "Ring around mommy!" in his sing-song voice. I will then get myself together, load Erik in the car, and put on a protective layer of Cover Girl Almost Nude lipstick so I can face the world.

I'm thankful for one more day to try this all over again.

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