Erik Quinn: The Heart of a Family: January 2007

Wednesday, January 31, 2007


It's a quarter past cookie time, and I have turned my nose up at a trashy movie in favor of doing a little writing this morning while Erik settles down into his nap. I treasure mornings when I have some time to myself, but this morning I can't seem to find satisfaction in anything. Erik and I had our breakfast together, and afterwards I strapped on some ankle weights and did a 30-minute aerobics video. Erik rolls around on the love seat while I sweat, and his hair stands straight up from the static he generates. Sometimes he will exercise with me, standing in front of the TV screen, rocking back and forth on his feet, and counting, "One, two, one, two." Eventually he lost interest and wandered off into his room, trying the front door to see if it was unlocked on his way by. After I finished and had a shower, we moved on to blocks. He doesn't understand the concept of blocks quite yet and refuses to stack them. I tried building things myself and letting him demo them instead. He brought me some books, and when I turned the page in one about construction equipment, he said, "Backhoe." Sure enough, there was a backhoe. Color me surprised.

I believe I have a parent group hangover from yesterday morning. Truthfully, if the roads had been better, I would have driven out to the mall instead. It was icy, though, and I opted for sitting with a cup of hot coffee in my favorite rocking chair in parent group. I was a little on edge yesterday morning for some reason, so I tried to keep as quiet and superficial as possible. It went fine, but I don't feel any better for attending. I still have a bad taste in my mouth about the whole thing. I'm tired of talking in that setting.

Erik has learned to activate the drum machine feature on his new keyboard. When it begins its jaunty little beat, he taps his chest and says, "ERRWWIK!" as if he is going to launch into a spirited rap song. I believe he would if he had the words to use. Apparently, Brian has been rapping for him (hugely hilarious in itself), and Erik has obtained a little of his own flavor. Brian steadfastly claims he did not teach Erik the chest tapping thing. Scary. However, this week Erik sang, "We will, we will, ROCK YOU! BOOM BOOM." Is he going to be the next LL Cool J or Ted Nugent? Only time will tell. I call him DJ Skooby Skoob, especially when he has his truck on its side and is spinning the wheels like records. He has made great progress in language skills in a period of one week and is now using the words "gone," "goes," and "comes." He says things like, "Daddy gone." If a ball rolls away from him, he will simply say, "Goes." I kept his orthotics off this morning, but noticed that he walked on his toes. I attributed this to (1) the floor being as cold as a mountain glacier and (2) his muscles and tendons being painfully tight first thing in the morning. I'll put him in them first thing from now on and let him have the evenings unshackled.

Erik had the pleasure of meeting our local symphony conductor's mother recently. She brought him a wonderfully soft ABC throw pillow and a little truck. He apparently repeatedly said, "Neat!" and "Wow!" upon receiving these kind gifts. She left my mother's house with a copy of The Strangest Song and was quite taken in by Erik's charm. My mother also told me that the symphony conductor himself plans on reading this book. How lucky am I? What better resources to have in my arsenal for Erik's experiences in the world of music? I hope to bounce some ideas off of him in the future in terms of getting Erik music lessons and finding a suitable instructor for whatever he decides to play or sing. After finishing The Strangest Song, I believe wholeheartedly that music lessons are a must and will be as important as any of the therapy sessions we have used to strengthen his body and mind, whether he has a talent for it or not. Music seems to almost feed these children. One of Erik's most used words is the word "music" itself. It actually comes out as almost a demand.

The photo I am attaching to this post is the view out my office window at this very moment. The vegetation looks as if it has been dipped in powdered sugar, as we have had temperatures in the 20s and fog. I really miss seeing the mountains when I open the blinds in the morning. Seeing something so gigantic is missing is a bit unnerving and makes me feel a little off balance, as if I have lost an anchor.

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Monday, January 29, 2007

Cooking with Erik

Good morning, everybody. It's Erik! Surprise!

I know I haven't posted here before, but my mom says most people in their right minds would think a toddler with his own regular guest segment on a blog is plain creepy. However, she's sleeping in today, and I thought I would take this opportunity to hurdle the baby gate and log on this morning to share a couple of my favorite recipes.

Mom found this recipe in Woman's Day and modified it to my tastes. She uses the tiny noodles, too, which are my favorite. She likes this one because it makes the house smell nice when it's baking. I think it's pretty awesome.

Pizza Casserole

2 cups tiny mac salad noodles
2 tsp olive oil
1 lb ground beef
1/3 cup finely chopped onion
1 clove garlic, finely chopped (can be omitted for picky eaters)
1-2 tsp Italian seasoning
1 can (10-3/4 oz) condensed tomato soup
1/2 c shredded mozzarella

Heat oven to 350 degrees. Cook noodles according to package directions. Drain and reserve.

Meanwhile, heat oil on medium-high heat in a nonstick skillet. Add ground beef, onion, and garlic. Cook until beef is no longer pink. Drain off excess liquid. Stir in Italian seasoning, soup, 1/3 c water, and noodles.

Take off the heat and add half of the cheese. Spoon into 11 x 7-in baking dish and sprinkle remaining cheese over the top. Bake at 350 for 25-30 minutes until bubbly.


Mom bought me a package of tater tots because I ate lots of them at Dominick's house one night. She was pretty surprised when I told her how yukky they are when she served them at home. She said something about it taking 10 years for her and dad to eat a bag of tots that big. She went on line and found this recipe for me, and I actually liked it. Oh, sure, it's no pizza casserole, but it's better than the crappy, dry tots by themselves.

Beefy Tater Tot Casserole

1 lb ground beef
1 green pepper, chopped
1 onion, chopped
1 can tomato soup (I used Campbell's tomato bisque)
1 (4-1/2 oz) jar mushrooms, sliced and drained
2 c (8 oz) mozzarella cheese, shredded
1 (32 oz) pkg frozen tater tots

Preheat oven to 400 degrees. In a skillet, cook the beef, peppers, and onions until no pink remains. Drain the fat. Add the tomato soup and mushrooms; heat. Pour into a greased 13 x 9-in baking dish. Sprinkle the cheese and potatoes over the top and bake at 400 for 30-35 minutes or until golden brown.


Bon appetit!

All my love,



Saturday, January 27, 2007

Presbyopic Ex-Party Girl

Today I had to BUY Mardi Gras-type beads for a little tactile stimulation activity with Erik. That's right. This former party-hearty girl had to PURCHASE party beads. There were no beads to be found in the entire house. It's official -- I'm old. I vaguely remember attending a Marti Gras party with Brian and Erik in the last couple of years, but in the last decade there have been no beads draped over my lampshades or my rear view mirror as a reward for any sort of illicit flashing of my pectoral region or for drinking as many or more shots of cheap booze as a 250-pound male fellow partygoer. I believe that my name is on a plaque somewhere in Mexico for the world record consumption of upside-down margaritas in one sitting. I just wish I could remember where.

Anyway, at the physical therapist the other day, Erik seemed to enjoy manipulating colorful strands of plastic beads and placing them in stackable toy cans. These shiny strands were difficult to roll or spin, and I made a mental note to go home and locate some in my party repertoire.

This brings me to another seemingly unrelated part of the story. I have been at war with my new ophthalmologist lately. I am pathologically nearsighted. I don't need glasses for reading but am unable to successfully travel from room to room in this house or perform tasks as simple as pouring a cup of coffee without some sort of visual correction. So far, I have been to this particular ophthalmologist twice. Since my cornea is apparently suddenly quite curvaceous in my left eye (astigmatism), I was informed that my contact lenses need to be tweaked accordingly. The first time I went, I came home with trial contacts that were not quite strong enough for me, but I became accustomed to the feel of the specialized snugness of the left lens quite nicely and anticipated having perfect vision when my new lenses arrived. When I was given the next trial pair of contacts made specifically for me, I was told to wear them for five days to see how I tolerated them. Not only did I see a ghost image of everything, I developed a horrible migraine headache that was resistant to every drug I could get my hands on. Today I went in and was told I needed a substantial jump in correction for my left eye and that I had to wait an additional one to two weeks for my new and improved contacts to come in. In order to come to this conclusion, she paraded me around the waiting room with the dorky cup-on-a-stick over my good eye for all to see. On top of everything, the glasses frames I initially tried on in the office that made me look model-chic, like a deliciously slutty librarian (for the record, that was what I was going for) with the thin, fake plastic lenses in them, now only made me look like Mister Magoo with my Coke bottle lenses in them. This is NOT the effect I was going for. At this rate, I'm thinking of surgery to correct all of this nonsense. The guillotine has never looked so damned attractive.

After my appointment, I braved the local grocery/department store next door wearing my crappy lenses to pick up some sundries, hoping my double vision wouldn't cause me to buy two or more of everything. I went to the little girls' section in the toy department and found a pair of glittery strands of beads for Erik, one purple and one gold. I picked the most regal, non-drag queen colors available (not that there is anything wrong with that). At the checkout counter, the woman remarked, "Oh, I just love this girlie stuff. Before you know it, she will have grown out of the dress-up stage." My brain surged, dangerously threatening to spew one of a series of snappy comebacks, including ones regarding grooming my son to be a successful Celine Dion impersonator in Las Vegas, but I bit my tongue. Instead, I nodded my head and said, "Yes, they do." After all, I didn't have a clue about tactile stimulation and sensory integration disorder before I had Erik, and I shouldn't expect a stranger to know all about it. Hell, I didn't even know how to change a diaper at the beginning of all of this. Sometimes it's best to just nod one's head and smile. I did just that and made it home, reminding myself that two of the four lanes of the highway were an optical illusion, and I survived to tell the tale of my adventures out and about.

Sadly, failing vision and my child's disability aside, what horrified me the most of all of this was that I had to BUY party beads.


Now if only I could remember where I put the dang things.

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Friday, January 26, 2007

Status Report #2

The appointment with our new PT went well yesterday. Ms. G depantsed Erik and let him frolic in the therapy room with the various toys while she watched his legs work. She also evaluated his spine. All of the obnoxious, noisy toys were put to the side by the time we entered the room, which I found quite thoughtful, and although Erik was initially unsure about the squeaky horn on one toy car, she worked with him and he was honking it himself by the time we left.

We will begin therapy in the pool next Thursday. I'm a little concerned about how I am going to cram three PT sessions a week into my already maxed schedule, but I know it's best for Erik. We will alternate pool therapy and hippotherapy in one therapy session each week from now on, in addition to his early intervention program (EIP) therapies twice weekly. Erik will straddle a horse for the very first time in two weeks. Insurance will apparently not cover everything, but at this point I'd sell my own blood if I had to for this kid of ours. The facility we are using features a trampoline, goats, cats, dogs, and another therapy room with equipment. It's kind of like Joe Dirt meets Scrubs. Some of the children who have used this facility have eventually competed on horseback in various competitions against children who have no disabilities whatsoever. As Ms. G told us, "Everybody is the same on a horse."

Some of the muscles in Erik's ankles are atrophying from disuse in his orthotics. Ms. G told us it was time to let him go without them for a little while each day. If I had not gone outside of EIP, I would have not known this, so it is already paying off. I missed my little boy's feet so much and forgot how adorable they are. We will allow him to play without orthotics on at home, but he seems to need the extra stability when he is away, as he seems overwhelmed physically and mentally in those environments.

I am officially entering a new phase in all of this. It's a new feeling of isolation, and I'm halfway embracing it, as I know it's part of this natural but messed up process, and most of it will pass eventually. All of these phases I have experienced I have successfully plowed through, although they all visit me again from time to time for various lengths of time without warning. This particular feeling stems from living in a world that is generally not geared for or gives a lot of value to people who are different. Period. While it is time to look beyond myself and reach out to the world again, it turns out I don't like some of what I see at all. When I grew up, I felt just different enough that I didn't feel I truly fit in anywhere, although I pretended like I did, and a typical childhood was hard enough without living with a severe disability. I see a long, challenging road ahead for Erik. Frankly, being around typical kids is still a special form of torture to me. I feel lonely and isolated unless I'm in the middle of a special ed class anymore. It's ironic because that was the last place I wanted to be at the beginning of all of this!

On the other hand, though, I have been in contact with two new families here in the state with little boys like Erik, and I can already tell I will like them immensely. We will hopefully meet for the first time in April at Sophie's Run. At this particular event, I find it impossible to feel isolated or alone.

And that makes me smile.

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Wednesday, January 24, 2007

Poster Boy

Tomorrow is a day from H-E-double hockey sticks. We have an hour-long evaluation with the private PT/hippotherapy people in the morning and our home PT visit in the afternoon. It is necessary to cram a thousand errands and several hours of work in there somewhere, likely between cookie time and nap time. Sadly, there will be very little left for my favorite time, cocktail time, so I will need to postpone that for the time being. As for our appointment tomorrow, I am not nervous at all. I just pity the fool that is the first to tell me I look exhausted at any time during the next 24 hours. I managed to get myself up on the treadmill this morning, and that was glorious. Hopefully, I can do that tomorrow to give me an extra boost.

In breaking news, Erik said three words in a row today. This is a huge accomplishment. They were at full volume and very clearly enunciated. Guess what they were? You guessed it!

"More! Cookie! Please!"

Tuesday, January 23, 2007

Well, Isn't That Special?

Can somebody tell me why I attend parent group again? I think I need my head examined.

It is quite obvious to me at this point that our group moderator thinks Erik is on the severe side of the Williams coin. If I reported what was said today during parent group, there would undoubtedly be an angry mob of parents and the people who care about me on her front lawn waving torches. What's funny is that her comments seem to bother the people who love me more than they do me. Yes, she bothers me on some level, but I think I have her figured out. She is only telling me what she sees, and I can't fault her for that, although tact and compassion are obviously not two of her strongest qualities. I am truly interested in seeing how other people view my son. There are some people who would never guess there is something different about Erik and others who tell me they knew at first glance.

This woman has a double Master's degree and I'm nothing but a college dropout, but at this point in life it is painfully obvious to me that having more paperwork on your office wall doesn't make you any more intelligent or better with people. Methinks my skin is thickening.

No, I'm not going to do the Church Lady dance. I'd be lying if I said I didn't think about it, though.

Monday, January 22, 2007


Erik and I were on our own today. Since he refused to nap and it is quite impossible for me to work with a toddler downstairs trashing the house like Tommy Lee on tour, I packed a peanut butter and jelly sandwich, a bottle of bubbles, and my camera, and we headed for the park. He laughed as I sprung him from his crib and put his coat on.

Our park is new and usually crowded, but the temperature in the 40s froze a lot of people out. It was wonderful outside, though, with bright sunshine that actually made it comfortable. We made our way to the section of the park designated for the younger set.

Erik made some genuine progress today. With my coaxing, he got down on his hands and knees to crawl up the steps on the playground equipment. We practiced a few times walking up and down, but I found it difficult to force him to practice things resembling therapy at a playground, of all places. For the very first time, he seemed to almost like the slide at the park, although I had to help him figure out how to sit down and prepare for takeoff. He pushed off on his own, and I was proud. We tried the bigger swings (his leg braces won't fit through the holes in the baby swings anymore, and he's too big now, anyway) shaped like easy chairs with plenty of straps to withstand maximum pediatric G-forces, and he liked them. I repeatedly told children they could go around us as we clogged up various equipment practicing playing on it. I hugged him tight when a car alarm blared, and I whispered in his ear. He shook violently, but he did not cry. I was proud.

This is where I had a little moment of temporary badness.

After our turn on the swing, I walked Erik to the concrete, where he slowed his pace and then suddenly stopped. I pried my fingers from his vise-like grip, walked over to a park bench, and sat down. I began trying to coax him over to me. Instead of walking towards me, his head drooped down slowly like a wilting flower. He rocked back and forth a few times on stiff legs and then was perfectly still. I called his name over and over, but I got absoutely no response. I fought a surge of panic until I saw what the problem was. I looked down at his toes and spotted a groove in the concrete. He would not swing his foot over it. I suspected he couldn't tell whether it was the edge of a step, a branch, or a curb. He couldn't see that it was just a line. He couldn't see it because his brain was likely playing tricks on him.

I watched this child of mine, looking so small and vulnerable on this expanse of concrete in the bright sunshine, frozen in place and looking uselessly at his feet. To my horror, I remained where I sat and dared myself to see how long he would do this. One minute. Two minutes. Three minutes. I kept calling his name. Children ran back and forth behind him, and he stood like an elfin statue. I felt a tear pool in my sunglasses and felt like a complete idiot for torturing myself. I walked to where he was and knelt down in front of him. His head came up slowly, and he smiled. I hugged him tightly and began to fight off the badness.

As a baby girl went happily cruising by in some sort of fancy cart pushed by her mother, I could clearly see everything I was missing out on. It's not a new feeling to me anymore. I see it every single day in the faces and bodies of babies -- the smiles, the chubby fingers skillfully pointing at objects, the bubbling laughter, and the animated babyness I never saw in my son. I see bodies and minds working beautifully together like they were meant to. It never seems to get easier, but it's definitely not new to me. I am reminded every day of what could have been. I have learned to smile and laugh when inside I feel a knife penetrating my core. I truly feel like we're in a different plane of existance or on the surface of another planet, especially when I'm on a playground. When Erik greets other families and they walk by without responding, I sometimes wonder if they can see us at all. But that's not new to me.

The thought I had next was definitely new. As it passed through my brain on a stray electrical impulse, blistering rage and profound grief mixed in my chest like gasoline and fire.

A large portion of your son's childhood has been ripped away from him.

I grasped his hand, and we walked away from the screaming, laughing children to a bench by the senior center to eat our sandwich in peace. Ironically, he tottered along like an elderly man. Other children passed us by, and they seemed to have wings. Erik smiled at them as we made our away down the sidewalk but was happiest when they were nearly out of sight. We quietly shared our sandwich in the sun. Erik knelt down to tentatively run his fingers through the grass before he stood up and continued chewing a mouthful of sandwich.

I could write volumes on having a child with special needs and how in the midst of all of the progress and happiness there are moments like these that hit you like a Mack truck and bring you to your knees, but I will keep my thoughts to myself here. Rest assured that most of my days are filled with joy, and I know how lucky I am. I suspect there will always be moments like this. Entire days like this. Like I said, it's nothing new, and I'll be fine.

I just believe that no mother should ever have to teach her child how to play.

Friday, January 19, 2007

Move Along

When all you got to keep is strong
Move along, move along like I know you do
And even when your hope is gone
Move along, move along just to make it through

"Move Along"
The All American Rejects

Yesterday was crazy. In the morning Erik and I went to a local physical therapy facility here for my first taste of a private therapist. Erik's tender gums are birthing a spiky, new molar, and he looks a bit rough this week. Because of his poor muscle tone, he drools and leaves a slime trail in the house when he plays, but the drool factory was running full-bore yesterday due to his new chopper. I can ask him to wipe his mouth, and he will do it about ten percent of the time now. On top of everything, his eczema is angry and red after our single-digit weather, and he is as rosy as W.C. Fields after an all-night bender. Despite all of this, he smiles!

The therapy facility was beautiful with a subtle zen/earth muffin feel to it, but it wasn't over the top by any means. Too much of that feeling puts me on edge and makes me question the validity of the treatment we will be receiving. There was one woman in the waiting room, and, of course, she was taken with Erik, who was unusually chatty. For some reason, he kept repeating the words "green" and "lights." There was a bowl-shaped water feature on an end table adjacent to where sat to fill out paperwork. Tiny, cup-shaped bells floated on a gentle current around its circumference, and as they struck and passed a fixed bell in the center, they would emit a tinny, pleasant-sounding ding. I told Erik not to touch anything, and he handled himself beautifully, entertaining the other patient and staff while I took care of our insurance information.

The therapist, Ms. G., emerged from the bowels of the building, introduced herself, and offered me her tiny hand. I had spoken to her once on the phone, and she was extremely likable and friendly, but I was surprised by her casual and down-to-earth nature. She led us to a large, brightly-lit room that looked like a cross between a nursery, a ballet studio, and Gold's Gym. Mirrors lined the walls, and exercise balls of every size and color were stacked in giant metal racks. There was a hint of humidity and the sharp scent of chlorine hanging in the air. She invited me to sit in a folding metal chair, but I shrugged off my jacket and made myself at home on the floor. I remember how bizarre and wrong it felt to sit on the floor in public with Erik and play in front of strangers the first time a year ago, especially in front of a two-way mirror being watched like monkeys. It's a little piece of our intimate, private life I was not used to demonstrating on command, and I had a little performance anxiety at first. I'm pretty comfortable with it now. In fact, I'm afraid that if I attend a ritzy soiree anytime soon, I'll just slump onto the kitchen floor without thinking with my glass of wine. Maybe I'll even break into spontaneous song ("The wheels on the bus go round and round...").

Ms. G. immediately tried to get to know Erik and pulled out an ominous-looking toy studded with colorful plastic covers over what could only be lights, indicating there had to be a battery in it, and I quickly inquired if it was loud. She expertly slid the toy back onto the shelf without questioning me or assuring me Erik would like it. Quelle freaking surprise! Big time points for Ms. G! I automatically and quickly explained that Erik has hyperacusis and that this was my only concern about hippotherapy. What is hippotherapy, you ask? This particular facility features horse stables and an indoor riding arena across town, and Erik would be interacting with, helping care for, and riding the horses. Not only did she explain exactly how they perform therapy with the horses in a safe manner, she told me what it felt like to the kids and demonstrated what the horses sound like, obscenely flapping lips and all. I like this chick.

She took us on a quick tour of their pool, which gobbled up most of the adjacent room and reminded me of the movie Cocoon for some reason. A woman with a meticulous silver coif and expertly applied lipstick bobbed up and down in it like a fashionable buoy. I wondered to myself how she kept her glasses from fogging up and what kind of freakishly strong hairspray she used. Her therapist crouched down to talk to her on the side of the pool. Erik greeted them loudly, and we left them to their exercises behind the door that lazily hissed closed behind us.

Ms. G. spent most of the brief session attempting to sell me on their program, but their reputation has already made itself known to me, and I was focused instead on what my gut was telling me. It didn't take long to come up with my decision. As long as insurance would pick up most of the expense, I was willing to sign anything.

From there, it was a drive back home filled with one-sided conversation, cookie time, and night-night time for Erik before his afternoon home PT session. By then, I was tired, and I knew I still had work ahead of me. I must have looked exhausted because Bev asked if I had a rough week. I must appear like Ms. Merry Sunshine 24-7 because people seem so bloody surprised when I'm not having a good day. Sometimes I feel like I'm not allowed to fall apart or just sag a bit, for God's sake. I'm just tired, lady. It's not the end of the world. You'd be tired, too.

After my work was close enough to being completed and Erik was snug in his crib, I ended up pouring myself a delightful adult beverage (Jack Daniels and 7-Up) and let the couch swallow me to watch Thursday night comedies with Brian, after which I hit the rack and slept like a log all night.

That's right. I didn't get up once.

Life is good.

Tuesday, January 16, 2007

State of the Nancy Address #1

Random Thought of the Day: To Billy Mays: Come on. There is NOBODY with a bathtub THAT dirty. If there is, I suspect housecleaning isn't that homeowner's biggest problem.

What can I say? It's going to be Wednesday tomorrow. There is nothing scheduled but work here at home, and I might even get to watch it snow from my office window. I was just informed by my husband that our furnace has suddenly decided not to function. Let's see. It's 23 degrees outside now, and we have no alternate source of heat. By morning I will have likely hacked apart our furniture Lizzie Borden-style with my camping ax. I will be lazily tossing fragments of coffee table on a giant bonfire in the center of our living room as I enjoy the morning news and sip my first cup of coffee.

Erik and I attended school today. I expressed my fears and nightmares in parent group about Erik attending school and was reminded that thinking of the future will only break my heart. Yeah, somehow that didn't make me feel better. Is it really going to be that bad? Apparently, it looks that way to our group moderator. She also kindly reminded me that the subject of the book I am reading (Gloria Lenhoff, the WS opera singer) is probably much less severe than Erik if she is that successful. Um. Why the hell am I here again? It sure isn't for the coffee. Sometimes I miss the days when I just sprinted out of the building.

One of my favorite mothers attended group today. Her daughter is 3 years old and recently suffered a stroke with resultant cerebral palsy. The rug has been jerked from underneath her feet, and yet she smiles and brings the other mothers gifts. Her little girl adores everything about ballet, so she ordered an outrageously expensive pair of ballet slippers and signed her up for a local ballet class, fluffy, pink tutu and all. This is despite the fact the girl cannot ambulate without assistance and her limbs do not work like they should. On the first day of class, her mother was right there with her like a loving shadow. This little girl was on cloud nine. When the instructor ordered the girls to stand on their toes, her mother held her firmly up in position. When the child could not move on her own, her mother did it for her. At the end of the class, the instructor was obviously disgusted with this and asked her to let the little girl walk to the front of her class on her own. We had a good laugh over this in group. We wondered what the teacher thought she was doing the entire session. She must have concluded this woman was the world's most overbearing parent, hovering over this little girl's every move. Good grief. I admire this mother so very much because she reminds me of the video I shared here of Team Hoyt recently -- parent physically and emotionally supporting child, making all disabilities temporarily vanish. It's absolute magic. Most importantly, I learned this beautiful, sweet, quiet mother truly has testicles the size of Connecticut in order to do what she did in class that day. Color me inspired!

Monday, January 15, 2007


I would classify my week without writing a success. If I had to rate how it went, I'd give it a 6 out of 10. I'll do it again.

Honestly, I thought I was going to keel over and die at first. Tuesday I found myself in a dark state all day, tears spilling while I tried to focus on my work. Why? My experiment wasn't working. I wanted instant results. My brain just wouldn't shut off, no matter what I did. In fact, I just seemed to think more without writing as a pressure valve. At the risk of sounding schizophrenic, the brick in my brain I acknowledged in my very first post is still present, although I am used to carrying the weight of it now. However, it remains quite palpable and uncomfortable. This is when I think another child would come in handy. I wouldn't have the time to obsess so much about Erik's syndrome. God, I wish I wanted another child. It truly bothers me that I don't. I tried to want one. I pictured my life with another child and even smiled upon imagining it, but I when I looked at the mother holding the baby in my own daydream, she wasn't me -- and I didn't want it to be. What's wrong with me? I came to the conclusion that with work and Erik, overloading myself with yet more responsibility might be a poor strategy. In fact, it might be what finally sends me on a one-way trip to the nut house. I'm following my instincts on this one, which are less than subtle when it comes to this topic. If I must go away to stay anywhere for a while, I don't want it to be where I eat quivering blobs of gelatin with plastic utensils or watch television in anything called a "day room." Please. Unless you can promise me enough tranquilizers to give me a couple hours of REM sleep. Oh, yes. I'll do anything for that.

I tried to watch movies. I turned on the television and came across Awakenings with Robin Williams and Robert De Niro. I watched about 10 minutes of the scene in which all of the people come out of their frozen, catatonic states. It has been years since I saw that particular movie, and I really wanted to sit down and enjoy it, but I was afraid my tears would never cease if they began to flow again. I read my book on Williams syndrome instead.

One of my best friends called me Tuesday or Wednesday, and after he got over the shock of reaching a snot-packed girl in the middle of an extremely ugly bout of sobbing, he told me I need to focus on only what I can control. The trouble is, I think I am. I am consumed by it all. It's overwhelming to think about therapy and doctors and wonder if I'm doing everything correctly. There are no real guidelines to follow in terms of what Erik needs in terms of therapy, and the doctors here are of little value to me, which means I become the one doing the research and asking for tests. His therapist told me Thursday that once he gets into the school system, they will be there for me, but she warned me that I am the one who will need to fight for him. There is no doubt in my mind I can do this, but it seems like a recipe for becoming more obsessed. I wonder if I will ever fully recover from the horror of all of this. I have scheduled an appointment for Thursday with a private physical therapist who uses hippotherapy to help children with disabilities. I also scheduled appointments for his eyes and his teeth in the coming months.

I was in bed cuddling with my ill-tempered, slightly stinky, geriatric cat the other morning thinking of the days when the two of us lived alone in my little blue shack. My worries then seem laughable compared to the ones I have now, although I know they seemed monumentous to me at the time. I was lonely during those years, and I can remember how that felt. Still, I take a look back at that girl mowing the lawn in the summer heat and wonder who she is. She looks like a stranger to me now.

Tuesday afternoon I discovered a card from Massachusetts in the mailbox. On it was the name McGarrah in looping, red felt tip ink. Inside was a card from Anne McGarrah's mother, thanking me for the letter I wrote after her daughter died from complications of Williams syndrome. She enclosed a copy of what was read at her grave. Before she died, Anne apparently told her family she would be waving to them at the funeral as they said their goodbyes. It was very personal, unexpected, and touching. Also included was a newspaper article documenting Anne's interactions with world-famous neurologist and author Oliver Sacks, whom Anne apparently loved.

And there it was.

The article explained Dr. Sacks was the subject of a movie called Awakenings, the movie I had previously been drawn to but turned off. I had no idea Dr. Sacks was the main character in the movie. I paused and fought the urge to look over my shoulder. I suddenly felt Anne was waving to me.

Thursday Erik parroted my words over and over. Communication with him is sometimes difficult. There are days when he demonstrates he understands parts of what I am saying and then days when I wonder if there are any lights on at all. After listening to him repeat each of the last words of my sentences all morning, I was ready to put my head in the oven. Dominick and Kathy came to visit us in the morning, which was wonderful (she brought piping hot coffee and pumpkin scones), but it's always difficult when I see how far behind Erik is in terms of...well, everything.

By yesterday, I was doing better. I made Erik spaghetti sauce with beef and mushrooms. Before we sat down to eat, he went to the window and began sobbing, rocking back and forth on his orthotic-encased legs and saying, "GO WAY!" He insisted something was outside, but I saw nothing, even upon turning the porch lights on. I'm not entirely sure what that was about, but it gave me a serious case of the heebie-jeebies. Sleep had eluded him all day, and he was exhausted.

It has been a roller coaster ride of a week, but I made it. What helped was a message written in looping, red ink on the day I needed it most.


Sunday, January 14, 2007

My New Theme Song

Song: Overkill
Colin Hay (Men at Work)

I can't get to sleep
I think about the implications
Of diving in too deep
And possibly the complications

Especially at night
I worry over situations
I know I'll be alright
Perhaps it's just imagination

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away

Alone between the sheets
Only brings exasperation
It's time to walk the streets
Smell the desperation

At least there's pretty lights
And though there's little variation
It nullifies the night from overkill

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away
Come back another day

I can't get to sleep
I think about the implications
Of diving in too deep
And possibly the complications

Especially at night
I worry over situations
I know I'll be alright
It's just overkill

Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away
Ghosts appear and fade away
Ghosts appear and fade away

Monday, January 08, 2007


It's time for an experiment.

Writing seems to be like heroin to me, and I may end up twitching in a sobbing, sweaty ball on the floor without it, but it is time for me to take a week off. D (diagnosis) day approaches in March, the day I get my one-year chip, and I find myself strangely more tense and more depressed. My head aches from my rampant bruxism, my muscles ache from dreaming, and I am out of sorts. It's time to step away for a bit. It's time to read a trashy novel with no value whatsoever. It's time to immerse myself in a Meredith Baxter-Birney movie on the Lifetime channel. It's time to eat too many cookies. It's time to laugh until I cry with friends. It's time to have a glass of hot wine on the porch.

I will see you on or after Monday, January 15, 2007, with a full status report.

by Dorothy Parker

I shall tread, another year
Ways I walked with Grief,
Past the dry, ungarnered ear
And the brittle leaf.

I shall stand, a year apart,
Wondering, and shy,
Thinking, "Here she broke her heart;
Here she pled to die."

I shall hear the pheasants call,
And the raucous geese;
Down these ways, another Fall,
I shall walk with Peace.

But the pretty path I trod
Hand-in-hand with love--
Underfoot, the nascent sod,
Brave young boughs above,

And the stripes of ribbon grass
By the curling way--
I shall never dare to pass
To my dying day.

Saturday, January 06, 2007

One Small Step for Erik, One Giant Leap for Mommy

We're smack dab in the middle of a winter storm warning today until about 4 p.m. Brian reported the presence of a small bird outside on the porch as he came through the door last night. When we peeked out the window a couple of hours later, it was still there, deathly still with feathers fluffed to the max, perched on a ledge where the porch support and roof meet in a sad attempt to escape the wind. I don't see him this morning, and I imagine he did not survive the night. We have maybe an inch of powdery snow this morning that has been blown into feathery mini-drifts by the angry storm.

I did not have a good night. I would call it more of a wrestling match with my pillow than rest. Even before bedtime, the wind was already howling around our unprotected house, rattling each window and pounding against the walls. The wind was whistling through something on our house and sounded exactly like Erik crying. Brian and I both were both completely fooled by it. I retrieved the baby monitor, which we never normally use at night, and kept clicking it on to check if Erik was truly awake and upset. To my knowledge, he only woke up once.

I don't have volumes to report this morning, but, as a lot of you with children know, the small things can be cause for celebration. Erik blasted off the WS growth charts long ago and seems to be the William "Refrigerator" Perry of the WS world, although he still remains at approximately the 5th percentile on the regular charts for weight. He remains of average height for a typical child and seems to be getting taller daily. Eating is no longer a problem for him, but finding things he enjoys is an entirely different story. His old favorites include cottage cheese and berries, cheese, ice cream, PB&J, grapes, apples, frosted shredded wheat, and, of course, pizza.

I have cut chicken into strips, dipped them lightly in mayonnaise, and lovingly rolled them in lightly seasoned bread crumbs only to have Erik completely reject them, leaving me and Brian with a tiny appetizer to eat ourselves. I have cooked up Barbie-sized plates of miniature pasta with a tablespoon of tomato sauce and a Lilliputian-sized serving of shredded cheese only to have Erik snap his eyes tightly shut and shake his head. No way, Jose. When he was a baby, I spent entirely too much time steaming vegetables, mashing them, and packing them into ice cube trays, only to have to dump these cubes into the trash because he gagged upon seeing them. I can't express how hard it is not to give up. It seems easier to purchase stock in Gerber and feed him number threes for the remainder of my lifetime. Can you picture it? Erik at a party years from now. His peers are enjoying a lovely buffet of chips/dip and a gorgeous array of finger foods. Erik gags on the artichoke dip and says, "Dude, I have something chilling in the fridge." He returns with a baby blue, rubber-coated toddler spoon, a jar of strained peas, and a sippy cup of pinot noir, officially making him the biggest dork alive and me the worst mother on the planet. What do I do, though? He refuses to eat most of the healthy food I cook at all. All I can do is keep trying. And I am one stubborn broad.

This week I made spaghetti sauce in the Crock Pot. It contained turkey sausage, ground beef, garlic, and onion, all of which Erik usually refuses to eat. I boiled a family-sized batch of tiny pasta salad noodles just in case Erik would eat it with us. To my surprise, he consumed an adult-sized portion of noodles and sauce from his large giraffe bowl for the very first time. He did it as if he had eaten pasta and sauce for years. I almost fell over. Like usual, I was so excited that the next day I ran to the store and bought a bag of turkey meatballs and some fairly healthy "Chik'n Nuggets." Meat is not on Erik's list of favorites, being a true-blue cookievore. Miraculously, he ate at least one of those meatballs dipped in barbecue sauce the next day. Last night I served some of the store-bought breaded chicken cut into small pieces with catsup to dip them in. He ate probably a total of two nuggets, along with a large serving of frozen peas. HOO-RAH!

I have always been a big believer of hanging in there, baby. Remember that cheesy 1970s poster of the kitten hanging from a tree? Easier said than done, but that kitten knew that she had no choice. Hang on or fall, and falling is simply not an option.

Like I said, I am one stubborn broad.

Thursday, January 04, 2007

Potty Time

(Today's post brought to you by the good folks at Unisom)

Good morning! I finally acquired some fabulous, deep sleep without the recurring nightmare about finding myself captive in a high-rise building (Freud would have a freaking heyday with that one) or being jarred awake by either my mentally ill cat or Erik sobbing his heart out in the other room. Unfortunately, sleeping soundly for me seems to require getting absolutely no sleep at all the night before. I'll still gladly take it.

The books I ordered arrived from yesterday. I received two children's books on going to the potty. One of them shows Baby Ernie depantsing himself in order to use a cheerful-looking plastic toilet. That was a bit unnerving, but after some getting used to the idea of a Muppet on a toilet or having buttocks, I'm cool with it. Kermit the Frog was usually seen without pants, after all. The other book utilized so many cutesy words for bodily functions that I almost found myself running for the nearest potty to vomit (vomiting was not covered in this volume and will probably follow in the collegiate edition). I will be editing this book with my trusty Sharpie fine point marker. You see, I come from a home where these words were simply not spoken. I can remember using the word "pee" once as a teenager and getting a silent, sideways look. I never uttered the word again while I lived at home and rarely use it to this day (cursing was not allowed in our home either, but for some reason, it is quite natural for me to swear like a sailor upon bashing my shin on the coffee table). Being a medical transcriptionist, I am fully comfortable with the words we used to describe the next of the numbered bodily functions. Growing up, we utilized the term "BM" for bowel movement, which, as it turns out, sends my husband into fits and amuses me to no end. Brian and I actually spent more time discussing what to call what comes from our son's backside than we did on any topic in premarital counseling. Now that we have established the appropriate term for excrement in our household (poop), I was horrified to realize we didn't really utilize a common term for urinating growing up. Not that I remember, anyway. We simply seemed to have an unspoken understanding of what would someone would do if they "went to the bathroom." It sounds so mysterious! Personally, the jury is still out on that one. My parents did a great job with us, as I am a fairly happy, well-adjusted adult with no real issues regarding using a private or public bathroom, but I may have to call them in as consultants on this one.

I also received two books on learning how to play the keyboard/piano. I sat down with one last night, and all of the years of reading music as a teen began coming back to me. Of course, being a flute player, I never officially learned to play the piano, but my mother taught me enough to give me a good foundation for learning more. Brian and I have vowed to at least brush up on our music skills and play with our new keyboard in order to entice Erik into sitting down and trying his hand at it. It turns out that no enticement was necessary, however. Since we set up the keyboard on its stand in our living room, he has spent many 30-minute-plus sessions perched on a kitchen chair at its helm. It seems to me that he is memorizing the sound of each key, although I may be reading more into this. What is without question is the fact that he loves playing it. He rarely ever pounds on it like a typical 2-year-old would be wont to do. He seems to analyze each note as it rings out and talks about the "pee-nan-no" quite frequently.

(To T: Thank you for your note. I am interested in hearing from you again about your family. I have added my e-mail on my profile. Just click "e-mail me," and you can send me a private message.)

Tuesday, January 02, 2007

Morning Rites

My morning assessment requires me to open my eyes
to the darkness infusing each frosty winter morning.
Thus begins my ritual --
My daily inventory of this world.

When I do not seem to dream,
sleep brings only hissing white noise
completely numbing each joy and sorrow --
bringing sweet, temporary amnesia and anesthesia.

Upon awakening, I find myself predictably drowning,
flooded with merciless, pulsing gushes of reality I cannot cease.

It is here I am required to feel each emotion anew.
The happiness that comes with the gift of morning,
followed by the heat of grief that never fades --
The purple, internal bruise I keep,
my shameful, secret hemorrhage.

I feel profound, cruel sadness here.
But there is great joy, too,
and, thankfully, plenty of coffee,
the scent of which drifts on caffeinated,
come-hither tendrils through the bedroom door,
sparking memories of the murmuring morning voices of adults,
some of them now only dusty ghosts,
who once fiercely protected my own growing girl-heart.

I whisper my love to these apparitions,
and own my spirit is again buoyant
upon hearing tiny man-mumbles through the wall.

I am no longer ever alone,
and there is just enough strength left in supply
to accept the daily, self-imposed double dare to play my role here.

I smile. There is life here that needs my care.

Sleep is indeed hard labor these days.
My muscles ache from hours of unconscious, nocturnal toil.
There is just enough slack to allow a luxurious, long stretch
before I plant each foot on the carpet
and allow them carry me to see one bright miracle of
a dawning smile springing from a growing boy-heart
that requires my protection and love.