Erik Quinn: The Heart of a Family: May 2009

Saturday, May 30, 2009

Broken Record

Sometimes I wonder how much Erik comprehends in terms of actions and consequences. Today I told him that if he got dressed, he could go outside, which is one of his favorite things to do. He was obviously very excited about this. However, when I asked him to come to me so we could begin the process of getting ready, he just gave me a sweet, slightly defiant smile and said that he didn't want to. He looked at me and stated he wanted to go outside. I explained that he could not go outside in his pajamas but that once he was dressed, we could do just that. He became instantly frustrated and told me no yet again. I attempted to remain calm and put his clothes back down, telling him that because he was not dressed, we would not be going outside.

A short time later, I decided to give him another chance, repeating the process with the exact same results. When I decided not to cave in and told him that my answer was still no and why, he followed this up with throwing a fit and then asking me one billion times if we could go outside, turning on the charm and hoping for different results. I repeatedly explained to him why it was we were not going outside until I felt like I was turning blue in the face. From there, upon the same question, I asked him if he understood why it was he was not getting what he wanted. He didn't really seem to have an answer. Brian listened to this whole conversation, and I wondered aloud how much of what I was saying was soaking into Erik's ears and brain. Brian's thought that some of it was but that Erik didn't seem to be able to help asking the same question over and over.

I had to agree.

Just how much understanding there is, however, remains unclear. While Erik is becoming quite talented at some things, he seems to be missing basic reasoning skills that other children seem to have that result in positive interactions and render discipline effective in any way. This is one of the many reasons we do not spank our child. I think it would prove to be confusing and hurtful to Erik without the proven ability to completely understand actions and consequences. I would always wonder if I did the right thing, as I could not determine how much he actually understood. For now, though, I continue to stand firm in my interactions with him, give time outs (which seem to break his heart at times), and hope that my explanations of actions and consequences sink in at some level to prepare him for the next situation.

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Saturday, May 23, 2009

The Gift of the Present

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.

-- Buddha

Erik and I are making some serious progress these days in many ways. I hope that the people who come here, especially the quiet observers, can see the contrast between the past and present in my writing. At one point, I was actually living each hour at a time. Seriously. I'm not kidding. It was THAT bad.

When Erik first came home, I remember washing and folding his little baby clothes I received at my baby shower. Of course, most of them had to be set aside because he could only wear preemie sizes. The colorful outfits and ensembles I had unwrapped just had to wait. I had only one outfit that he could wear, so my mother sewed some little sleep gowns in cheerful fabric for him as well. I remember looking at the clothing in the next sizes up and wishing I could time travel to the point he would be wearing those little overalls and t-shirts. A time when he would be walking just before his first birthday. A time when I would feel like the mothers around me seemed to feel. A time when everything would be okay. Of course, things would turn out much differently. His diagnosis was still well over a year away. I hid it as much as I could, but I wasn't having any fun at all. Something wasn't right, and I assumed it was within myself. It was like being in the middle of a bad dream. I kept trying to talk to others about my feelings without sounding crazy. I was told I was either in the midst of postpartum depression or received a knowing laugh because I was just having a hard time with the normal stuff everybody goes through. That made me feel worse. In my heart, I felt nothing but despair. I even felt next to nothing for my new baby, although I knew how I should feel and was waiting expectantly for those feelings to come. I was going through the motions. Don't get me wrong -- I knew I had an important job to do, and I didn't question that for one single moment. I would be a good mother, do or die.

I just wondered if perhaps I would actually die doing it.

Yeah, it was THAT bad.

We have been through the ringer for the past four years. If I stop and think about it, being Erik's mother is more difficult than I ever could have imagined. For this reason, I just don't stop to think about it much unless I am writing here. That is why I still come here. There is a special kind of buzzing numbness that has set in for me after some time that allows me to complete my activities of daily living caring for my child with special needs. When this first washed over me, I couldn't feel much of anything at all. Now, however, I can easily feel selected emotions through it. I enjoy life from inside this thick bubble that surrounds me and protects my injured heart with a strange ansthesia that used to feel like a state of shock but is now quite familiar and useful to me. This is something I never needed or even knew about before but keeps me from shutting my front door and collapsing in a heap behind it every day. It's a blessing, but I am a little sad that I will always remain almost completely numb in places. At the beginning of this, I watched other WS parents live life seemingly so easily and wondered how they did it. Now I understand. It isn't easy at all, but it's definitely possible.

Erik is now a lanky, beautiful boy. His shining, blond hair is darkening to the color mine used to be. His strange, animal cries of distress in the night ceased long ago. The colorful sleep gowns and baby blue preemie outfit have been sealed in a box and seem like part of ancient history, like part of the most twisted museum exhibit ever. His development has taken another giant leap lately, which has allowed me to count my blessings once again (hence this post).

I am able to have real conversations with Erik. I don't have to look into his eyes and wonder what it is he needs or wants. I can just ask him. The answer is usually related to chocolate or playing outside. I asked him this morning if he would like socks on his feet, which regularly bleed due to his thin skin, and he answered, "Actually, maybe some other time." He rides his tricycle with ease and can eat like a lumberjack with the help of reflux medication, which I really don't give a second thought about anymore. His sense of humor is like mine, which tickles me to no end. Sometimes we both look at each other and laugh at something without exchanging any words at all. He is no longer a strange, fragile creature that wails nonstop and doesn't look at me directly. We have a real connection now. When he asks to cuddle and our noses touch lightly, I can see right into him through his lacy, blue eyes. He has a beautiful soul and seems to know mine quite well, too. His "disability" allows him to sense how I am feeling, no matter how hard I try to conceal my emotions from him.

These days when I fold clothes, I ache a little when I put the ones that have gotten small to the side. I don't wish the future would roll in faster anymore. Although I am hopeful, what's to come is too frightening and overwhelming to take in at once, so I don't look too far ahead and take a few days at a time. Besides, I'm much too focused on the child I have at this present moment. The one who amazes me every day with what he accomplishes, despite the fact things are sometimes a thousand times harder for him than they are for other children. Don't get me wrong -- we still have massive challenges. We still have really bad days.

However, my heart is in the game now.

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Thursday, May 21, 2009

Summer Firsts

The church called today to personally invite Erik to participate in vacation Bible school in July. They have apparently already made arrangements for Marla, Erik's aide during church services, to be by his side throughout each session. I didn't know what to say to this, really, and the conversation was riddled with awkward, silent holes. I almost cried after I hung up the phone but held it together. I am just so incredibly thankful.

I also was invited to join a friend and her son (also with a disability) to participate in a parks and recreation art class for 2 to 4-year-olds. I was previously thinking about trying the music exploration class, but the more I read the description, the more I think art might be a better (quieter) way to go this year. Erik's hearing is still very sensitive and terms like "family music jam" seem a bit off-putting. We'll do it next year.

It's settled, then -- Jesus and art.

I have butterflies in my stomach, as this will be the first time we have done anything like this. I remember participating in classes like these as a child, and I wouldn't trade the memories for anything. Now it's Erik's turn.

I'm so scared. But I'm so ready.

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Tuesday, May 19, 2009

The Cicada

It's strange to see the feelings you have experienced written down by someone else. To see your story told by another family. Many of the details may be different, but the women who have shared their stories with the world make me realize that parents like me have gone through almost exactly the same thing before me, and there are parents to be out there who are about to go through hell after me. We are all singing verses of the same song at different times, like singing rounds. It's horrifying and validating at the same time.

This is a beautifully written account of another story like mine. It is a heart-wrenching piece written by Jenny B. called The Cicada. Many of us seem to mourn the loss of the person we thought our babies would become, but I have learned that we also mourn the loss of who we used to be pre-diagnosis. That's exactly what I have been doing for the past couple of years.

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Monday, May 18, 2009

Dream Date

Everything's gonna be all right!
So, woman, no cry;
No - no, woman - woman, no cry.
Woman, little sister, don't shed no tears;
No, woman, no cry.

-- "No Woman No Cry" (Bob Marley)

I had a great day with Erik.

He has been feeling better now since a trip over the mountain to see my grandmother Saturday. When I went in to greet him this morning, he was so distracted by the ominous presence of Gracie-Cat just outside his door that forgot to refuse to let me take him into the bathroom and place him on the commode, which he then used as if he had been completely potty trained for years. Usually, his borderline violent protests make any sort of potty-related activity completely impossible. He asked for waffles and ate two of them before allowing me to work out on the treadmill and shower while he watched his favorite shows (Super Why and Sesame Street). After that, he asked if we could go to the playground. It was a perfect morning for that kind of thing, and I decided we had better get out while it was still a little cooler. The filthy house could wait.

We went across town to a park we don't usually visit. It's near the trendy shopping district and a group of expensive homes and condos perched on a rocky bluff overlooking the river. A couple mothers stood in the shade next to double strollers, bottles of sunscreen sprays, and an array of interesting snacks in clear plastic bags. They smiled at me, and I smiled back.

Erik wore his AFOs today. I have been pretty bad about employing them lately, but his rapid growth has made his Achilles so tight that I have been forcing myself to strap them on him, even in the heat. However, I regretted putting them on as soon as we got out of the Jeep at the park and he began moving as if he had segments of stovepipe over each leg. He didn't seem to mind, though. We passed the fence and entered the play area, which was only being used by a handful of children. Erik walked stiffly up the ramps to a surface riddled with small holes and then held onto the railing for dear life with both hands, shuffling his feet forward until he could adapt to his new surroundings and determine the stability of the surfaces he seemed to have trouble visualizing. I walked before him over a little bridge and stomped my feet to show him how to feel things out. I could feel the other mothers' eyes on me. I suddenly felt a little like a mother bird teaching her hatchling how to fly. He stomped along behind me, and we made our way to the top with only one little fall temporarily shaking his confidence. We stopped to watch the traffic glide by, and he greeted each vehicle with a hoarse, hearty, "Hello, motorcycle!" or "Hello, car!" He was most thrilled by the deafening equipment two men in orange vests operated nearby on the grass, including a weed trimmer, a riding lawn mower, and a leaf blower. I sat to let the sun bake my nearly bare feet and shins and enjoyed the look of the dark green tops of the pines in the distance against a postcard blue sky. The birds sang, the lawn maintenance equipment farted in the distance, and everything seemed to hum in unison, making air feel almost electric. After Erik was finished observing the world from our lofty perch, he sat down on his bottom and took the slide to the blond-colored wood chips below. He found a steep set of metal stairs and informed me he wanted to climb them. After my encouragement and a slightly shaky start, he mastered them. He even seemed to listen to me when I suggested holding on differently. We were completely in sync. He continued to explore everything, and, amazingly, I was able to sit close by, relax, and watch him play fairly independently for the very first time. Once the sun rose high in the sky, dark, linear shadows of metal railings cast themselves over the surface of the ramp we previously took. Erik froze in his tracks, seemingly unable to see where to step. I asked him if the shadows were freaking him out, and he answered that they were. I offered my hand to him, which he gripped tightly, and we stomped together back to the top through the shadows. We passed one of the put-together mothers, who was now holding a chubby, drooling infant wearing a frilly sun hat in her arms, and she said, "Boy, the ramps and things here seem to be really good for him."

I didn't really know what to say.

For once, I wasn't thinking about physical therapy, really. We were just in our normal, perfect little world, set apart from everything and everyone else. I prefer it that way at the playground, which is a difficult place for me to be. This woman's voice snapped me out of my trance, and everything around us seemed to crash into me. I can't remember if anything came out of my mouth in return or not. This was a first. I have never had a stranger comment on anything except perhaps about how cute Erik is. I felt defensive and slightly confused. She certainly didn't seem to mean anything negative, but I felt slightly off balance. I smiled, nodded, and continued up the ramp.

And then I saw her son running in front of us in the sunshine.

Hooked over each ear were bulky pieces of grayish plastic with wires snaking from them to spots on the back of his skull. They looked to me like they could be cochlear implants for deafness, but I couldn't be certain, as I know next to nothing about this kind of thing. Suddenly, Erik's plastic leg braces didn't seem so obvious or strange after all. I took a deep breath and exhaled the last of my defensiveness into the humming atmosphere, attempting to absorb the energy around us even more for the reservoir of strength that I need to dip into from time to time.

When we left the park, we were covered in a light sheen of perspiration. Erik's cheeks were covered in a happy, exhausted blush. I assigned him the job of holding my water jug while I drove, and he seemed delighted with this job. As we made our way back across town, we sang "No Woman No Cry" at the top of our lungs. I felt wonderful and didn't feel like going home quite yet. I decided to run through the drive through at Taco Time. We returned with our little paper bags and enjoyed our bean burritos together at the kitchen table. I even poured Erik some sparkling orange pop, which I something I rarely let him have.

It just seemed like a special occasion somehow.

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Saturday, May 16, 2009

Construction Zzzzzzzone

Here is Erik just as I found him during a nap recently. If he has the light on in his room and is too tired to turn it off before losing consciousness, he will bury his head like an ostrich under the covers and sleep upside-down. He also makes sure he is surrounded by a collection of toys, most of which seem rigid and miserable to have in bed, but he prefers it this way. Often it looks like someone has dumped the contents of Toys R Us atop his mattress, and he sleeps peacefully in the middle of it all. Of course, Stinky Dog is always close by. You can see him here under Erik's foot, jockeying for position among the rest of the toys. I have never seen a kid regularly sleep with a track excavator before, but it makes sense to me. Erik sure does love them.

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Friday, May 15, 2009

Slow Healing

Believe it or not, Erik is still not feeling well after almost four weeks, although for the most part, he has been pretending to feel peachy in front of others outside of our home. He has been lazing on the couch and watching us exercise in the morning instead of holding our hands and doing the moves with us. He has burst into tears at the tiniest things. He is not eating much of anything most of the time and then binges because he is hungry at other times, which makes him sick. He put himself to bed for a nap yesterday and asked me to read him a book.

Not normal.

This morning I thought things were improving. He was perky when my neighbor came to join us for some exercise. He flirted with her, rolled his toys around, and played his piano. I took him to school, and he seemed happy.

At lunchtime, my cell phone rang. It was Erik's teacher. She reported that she couldn't really put her thoughts into words but wanted to let me know that Erik was just not himself. He filled his diaper (a first at school in itself) with a large amount of toxic waste (although she stated it much more politely) and kept repeating things like "NO" and "I DON'T WANT TO." I thanked her for the call and waited for the school bus to arrive.

As Erik got off the bus, he had the driver racked with giggles and was his usual, chipper self. When we stepped inside the house, however, he politely declined lunch and went off to play with his trucks. My parents arrived to pick him up for the afternoon, and when they asked him if he was ready to go, he said he didn't want to.

Not go to Boppa and Gua's house? Something is definitely wrong.

As my parents climbed into their car to leave without him, I told my mother I would take him to the doctor today. Erik sat in exhausted defiance on the grass next to his tricycle. I sat down next to him and quietly explained that his Boppa and Gua were going back to their house. He seemed to be okay with that -- until their engine roared to life. The boy snapped out of his trance, looked up at me with instant tears shining in his eyes, and cried, "No!" He stood up from his soft place in the grass and began to run toward the car. They opened the back door for him, and he climbed in.

Why is it that Erik seems so vulnerable to everything on this earth to me? My brain reminds me of the stomach bug going around town that reportedly takes this much time to pass. I'm even in the medical field and am quite aware of what to look for and when to take my child to see a physician. He is hydrated and rested. But things are difficult enough on a daily basis without this crap. Especially for Erik, whose GI system doesn't work all that well without medication twice a day to begin with. Somehow I think the universe should just provide a free pass for us regarding this kind of childhood illness, but it doesn't work that way. I soothe and care for the normal bugs, cuts, and scrapes without much of a second thought but am always aware that every injury and illness has a deeper, ominous flavor because of Erik's physical challenges, and I can never completely silence that voice deep inside of me that attempts to send me into a panic. It doesn't have the power to do that anymore. However, its whispers still haunt me and always will. I can't imagine that as Erik's poor little body ages that this will improve at all with time.

That scares the daylights out of me.

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Saturday, May 09, 2009

Three Years

I wrote the very first entry of my blog on Mother's Day of 2006. Happy 3rd birthday, blog o' mine. I have never loved and hated something so much at the same time. Of course, this excludes a little something called Williams syndrome.


With time
you will learn to shoulder dense burdens
so incredibly heavy they once made your heart strain
and your lips mutter groans of agony
that the universe didn't seem to hear.

With time
what seemed unbearable will become mundane,
and the narrow tunnels for vision
will swell to allow the rest of the world
to come into focus at last,
although you will never see things the same.

With time
even your nightmares will fade,
yielding the power they once had to
twist you into a sweaty knot in bed
and jolt you from sleep, wrapped up in damp sheets.

With time
you will appreciate the sweet, buzzing numbness--
the anesthesia you will fight with all your might at first
but learn to succomb to in order to feel less
and attempt to endure more.

And you will endure more.

With time
you will learn there is no other option.

With time
you will simply learn to prevail.

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Tuesday, May 05, 2009

Crappy Visit

In every life we have some trouble
When you worry you make it double
Don't worry, be happy

-- "Don't Worry, Be Happy" (Bobby McFerrin)

Yesterday I had a message on my cell phone reminding me about Erik's "Happy Visit" (apparently we have graduated from the "Fun Visit") to the dentist scheduled for this morning. I could feel my face fall as I listened to the cheerful voice and felt my mood turn stormy. After our last appointment, I was ready to demand a copy of our records and make an angry exit today. I tried to keep an open mind, but I found myself a little more than tired of trips to that place. I have lost count of how many times I have been there just in this calendar year.

I made sure not to tell Erik where we were going until this morning at breakfast, and he seemed to take the news well. When we arrived, we were led into the private room with the big, orange chair once again, although the wide door was left ajar. Erik was already creating a lake of hot tears, telling us all, "I don't want to!" The hygienist gave Stinky Dog a ride in the chair, acting as if we were in the middle of the most magical place on earth, and pulled out the usual tricks that seem like a complete waste of time to me. The only thing Erik seemed thrilled about was the suction tube, which I previously told him was a little vacuum. He expertly used it on Stinky Dog's face and shook the stuffed animal, indicating that Stinky was quite ticklish.

The dentist made his entrance, upsetting Erik even more. He placed his large hand on my shoulder and greeted me warmly. He seemed more connected with Erik and less distracted than he did at our last visit. He talked to me through his conversation with Erik, telling him he would only do what I approved of doing, and this made me feel better. We ended up abandoning the large exam chair. Instead, the hygienist lowered a small chair on wheels, and I sat in it, holding Erik firmly on my lap. Erik was now hysterical. I put one hand on Erik's forehead and pressed the back of his head against my shoulder. His screams intensified. I smiled at the dentist to signal him it was okay to proceed, and he rolled his own chair closer to me. My knee pressed into the crotch of his expensive slacks, and I tried not to notice. We locked together like this, sandwiching one angry patient, and I held Erik's strong hands down. I decided it was just best to get this unplesantness over with.

It wasn't necessary to use the metal device to lock Erik's jaw open after all. It remained a silent, threatening presence atop the paper-covered tray. Instead, Erik cried so hard that his mouth automatically opened, allowing the dentist to paint the back teeth with the cream-colored fluoride varnish and wipe off the excess with gauze pads. The dentist soothed Erik and reminded him the world wasn't perfect.

This I know.

After the short but messy procedure, the dentist tenderly wiped the tears and snot running down Erik's face. Erik ceased sobbing and actually thanked the dentist on my cue, obviously not holding a grudge. In fact, when the dentist asked for a hug, Erik quickly gave him one, almost collapsing into his arms. We collected our balloon and toy car from the frog bucket, and I returned to my chair back in the waiting room as promised to let Erik stim on the spinning toys for five minutes. Another mother attempted to make eye contact with me, but I was feeling less than social and looked away. I'm sure Erik's screams were more than audible from any chair in the building, and I couldn't imagine what she was thinking when we emerged and my 4-year-old crawled around on the floor, giggling with delight and spinning everything that wasn't glued down. It's not embarrassment I feel but a sense of disconnect with the world on occasions like these. Erik looked at the other children in the room and brightly spouted, "Hola, amigos!" and "Hello!" The younger girls echoed a pleasant greeting on their way by. The older boy looked annoyed and ignored Erik altogether. Typical. It will be a miracle if I can get through Erik's childhood without slapping a stranger's child. So far, so good. But I'm not making any promises.

Soon I dragged Erik from where he was sprawled on the floor, and I made it to the car with just minor protests. As I buckled him into his car seat and deposited the putrid pile that is Stinky Dog on his lap, I took my palms and placed them on each side of his face. I paused for a moment and looked into his eyes, holding him there almost too firmly, and I kissed him very hard on the forehead before I shut the door and walked around the Jeep.

Our next "Happy Visit" is a whole three months away this time.


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Monday, May 04, 2009

Train Phobia

Erik was still nervously chattering about trains as I put him into bed last night. I snuggled into my own bed to stay up late and watch the new episode of Breaking Bad when I heard the whistle of the 10:40 pierce the night air. I frantically pressed the mute button on the TV remote and waited with every one of my muscles locked into a tight, whole body cringe.

He slept through it this time.

At this rate, I am developing my own issues regarding trains and sirens. I freeze every time I hear one and ready myself to begin the damage control process.


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Sunday, May 03, 2009

Welcome to the Club

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

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

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Erik woke up screaming again last night. His shrill cry pulled me out of the deep sea of sleep where I floated under the surface, and my body automatically shot up in bed. My heart pounded dully in my ears as I made my way to his bedroom.

I opened his door and crossed the carpet, which was a mine field of jumbled toys in the darkness. The top of my foot caught the edge of the hard, knobby tire of a monster truck. I attempted not to swear.

As Erik detected my presence, his screams melted into heaving sobs. I settled down next to him in bed and stroked his hair. He began to explain his distress.

"Little Red Caboose! Coming down the track! I heard the whistle!"

He was still hysterical. I wondered if the sound of a distant train had seeped through his bedroom window or if that particular sound, which tormented him horribly just a couple of years ago, continued to haunt him in his dreams. Sirens do. He began ranting about flashing lights and tractors. In the center of my still sleep-numb body, my heart sent throbbing ache to my brain.

He let me hold his hands and mumbled through his tears. He said, "I love you, too."

I stayed a few minutes until he was calm, and then I got up to leave him to go back to sleep, despite the urge I had to stay and lie next to him in his tiny bed. He needs to learn to fight his own battles. Over the years we have ensured that he understands that we are just around the corner. He began to whimper, and I told him that he needed to get some sleep.

I am thankful that Erik will never fear the bogeyman I knew as a child. Because of his strange love affair with the world and all who live here, there is and likely will never be that particular monster in Erik's dreams. At least not like the one that came for me in the night. However, there is apparently an endless supply of terrifying nightmares in Erik's world that I will never know or begin to understand.

Nightmares that don't automatically dissolve in daylight like the bogeyman did.

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