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.

The Basic Principles of Wound Healing

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

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

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

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

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

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

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

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

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

Oh. My. Gawd.

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

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

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

Why not?

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

Pearls

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

School + Bus + Driver = Screwdriver.

Makes perfect sense to me.

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

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

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

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

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

I'm back, baby.

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

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

What's important is that I'm me.

One Year Anniversary

She was no longer wrestling with the grief but could sit down with it as a lasting companion and make it a sharer in her thoughts.

~George Eliot

I woke up expecting to feel a mix of emotions. Strangely, I can't say this is truly the case. I am expecting anything today emotionally, but right now I feel something new in my heart.

One year ago we heard terrible news, but life has gone on. At the moment, the coffee pot is sputtering in the kitchen and I am watching the baby monitor on my desk for scarlet flickers. My son is sleeping soundly in his crib, and my husband searches for something to wear to work. If I were a stranger peering through the windows of this house now, I would think that nothing horrible ever happened at all. Our faces are relaxed, and everything is quiet.

However, we have been at war. We have endured excruciating heartache. I was frequently and unfairly tackled by stabbing grief on sunlit days that originally looked promising to me. Being weak, I broke each time but found that in the end it only fueled my fight. I had no idea that day one year ago how difficult this would be not only on ourselves, but on the people surrounding us. As the last couple months have passed and my focus has shifted, I have finally turned my face up to see the devastating pain my friends and family will carry with them forever as well. A bomb detonated in our family, but everyone in its reach was savagely wounded.

I thank God for the miracle of healing. One year ago I had difficulty feeling like I could simply physically get enough air. I had my first panic attack. One particular evening the week after the diagnosis I sat at the kitchen table trying to eat dinner and was completely unable to stop crying long enough to take a bite and simply swallow food. I felt horribly pathetic and lost.

In one year my dreams have changed. The visions of chunky, twisting, clown-colored ropes of DNA are less frequent. I no longer dream of Erik doing amazing things and wake up to discover they were cruel lies my brain manufactured. They were devastating, but, again, they became just more fuel for the fight.

Most of all, the best part of being one year out is that when I wake up, I don't have to listen to my brain report the bad news to my ignorant heart over and over anymore. That was honestly the worst part of this whole experience. I relived the pain each day as if it was brand new for months. My body and brain now have the facts permanently infused in them, whether I am awake or not. Before I open my eyes each morning, I am already cognizant that Williams syndrome is forever present in our lives, and it is old news. I am no longer destroyed each morning I meet a new day. I no longer am obligated to lose the first battle of the day.

Today's fight --

Nancy: 1
Williams syndrome: 0

So there. Go to hell, WS. Now where's my coffee?

In summary, I have learned there will always be grief, but I am no longer physically suffocated by it. This particular flavor of grief no longer has the extraordinary power it once did over me. I have learned how to harness it and make it my fuel. I no longer fear its bilious taste.

So what do I feel in my heart today? Something I never expected to feel.

Peace. Confidence. Most surprisingly of all, I feel joy.

I MADE IT.