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

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.

I'm Climbing

We took Erik to the park yesterday. I could not believe my eyes. He did this over and over again by himself for the very first time. I can't believe he is playing around other children now.



Friday was very difficult for me, but everybody around me seemed extra nice, even without knowing I was having a hard day. Things that happened:

* After I dropped Erik off at school, I received a text message from my neighbor thanking me for working out with her during the week. She said I inspired her, that she loved me, and that she wished she had joined me sooner. I have to admit, I have never laughed so hard while exercising. The day we sat on exercise balls to work out was the day I almost ruptured my spleen laughing.

* After that text message, my cell phone rang. It was my friend with ALS. He successfully completed a stationary bike ride at the physical therapy office to qualify for an ALS study in Texas after two previous attempts fraught with exhaustion and gross error on the part of the medical staff. He was elated, and his spirits were finally up.

* The phone rang when I got home, and it was Erik's teacher. She was very excited and wanted to share a story with me. They had a little white and tan rabbit visit the classroom. I have witnessed the way animals react to Erik, and I smiled, knowing what was coming. Each child was allowed to hold the bunny. She said it was quite twitchy and nervous, but as soon as it got to Erik's lap, it became incredibly calm, even with Erik touching it exactly like the other children had. She was amazed and told me it seemed like the rabbit knew he was special. He then bent down and whispered, "I love you, too" to the creature. She said it was one of the sweetest things she had ever seen and that they all love my child so much.

* When the school bus came to drop Erik off, his backpack was MIA. I told the driver that it was probably still at school and not to worry. Twenty minutes later, the bus came rocketing back up my driveway. She had apparently found it and delivered it to my door.

Three Years

I found God on the corner of 1st and Amistad
Where the West was all but won
All alone, smoking his last cigarette
I said, "Where you been?" He said, "Ask anything"

Where were you when everything was falling apart?
All my days were spent by the telephone that never rang
And all I needed was a call that never came

-- "You Found Me" (The Fray)

Today marks the third anniversary of the day we drove to the children's hospital and made our way home through the rain with Erik's diagnosis. At the two-year mark, I felt a sense of triumph, but this year I mostly feel exhaustion. I suppose this day will feel a little bit different each and every year.

I knew we were about to receive a diagnosis that day. In my heart, I even knew which one. When the geneticist handed me a stack of papers identical to the one I had printed out at home, being correct didn't soften the blow a whole hell of a lot. I was just acutely aware of the fact I was about to be sucker punched in the gut. I saw the doctor's lips moving, but, quite honestly, all I heard after the words "mentally retarded" was hissing static. My life would never be the same.

Some of the sharpness of that afternoon has begun to fade, but the day will always feel dagger-sharp to me. The way the exam room smelled and felt. The pounding of my pulse in my ears. The sudden heat in my cheeks. The tears that began to spill and wash away my composure, despite my premeditated plan to contain them. The way my blood rushed from my limbs and poured into my core as if I had just sustained a life-threatening wound. The people who seemed to examine our family as if we were grainy pictures in textbooks. The scream of despair that lodged in my throat as we sunk into the hospital lobby on the elevator. The call I made to my mother as we drove out of the city. Each and every song that played on the radio. Most of all, I will never forget the way I couldn't shake the feeling that a filthy parasite had woven itself into my beautiful baby's body and the desire I had to rip it out of him and make him clean again. Crazy, I know.

There are some things I will never forget, no matter how hard I try.

I view each anniversary as an accomplishment, too. I have one more year under my belt. This time around, though, it's different. Looking back, the last three years feel like three hundred. I hate that I'm still a rookie at this and that I still have any grieving left to do. This year I didn't stop to grieve much on a daily basis, so I suppose this makes stopping to recognize my feelings more difficult than I had imagined it would be.

I am thankful the thick wall between me and Erik has finally begun to disintegrate. We have begun to mix with the rest of the world to the best of our abilities. We are beginning to talk to each other on a new level. We sing at the top of our lungs in the car to songs about tractors and drifters and girls. We laugh until our faces hurt at our own private, primitive jokes. He delights the people around him, and he is genuinely delighted by them. He has opened my eyes to the world in a new way. I want to see the world through his eyes.

However, this diagnosis is exhausting. There are the health problems that threaten to emerge around each and every corner. The cognitive difficulties that frustrate Erik and cause problems at home. The raw, unbridled emotions just beneath the surface of him that are triggered by the tiniest misunderstanding of how the world works. The days he is bent at the waist to examine the wheels of each vehicle in clinic parking lots as I try to rush us to appointments. The way he clamps his palms over his ears every time I pick up an unfamiliar object. The way he talks about vacuum cleaners, fire alarms, tractors, and all-terrain vehicles 24/7. The way he asks me twelve times a day if the car will start, even though it has been two months since the morning my Jeep's battery died.

Worst of all, there are now days I feel the weight of the stares of strangers. Some days I want to take him firmly by the shoulders, shake him, and scream, "ACT NORMAL!"

I sometimes hate what this diagnosis has done to me.

Would I change things if I could? I'm grateful I don't have that opportunity because I can't promise you I wouldn't. I will never be the person I hoped I would be. The woman that causes people to look at each other and whisper, "She is so amazing. She never complains and always has such an positive attitude." Williams syndrome has robbed me of what remained of my innocence and threatens to drain my already brackish reservoir of optimism. It has hardened my personality and softened my heart at the same time. I hate it, and yet I love the people it has brought into my life. I love the way it has helped shape my son's wonderful personality, and I hate the fact it will make his life incredibly difficult and invite ridicule from some.

Feeling two opposite things intensely on a daily basis is pretty damned exhausting.

So here I am. Who knows where I'll be next year.

Shoes and Socks

Let it go
Let it roll right off your shoulder
Don’t you know
The hardest part is over
Let it in
Let your clarity define you
In the end
We will only just remember how it feels

-- Rob Thomas "Little Wonders"

I went to Payless Shoe Source yesterday and explained my orthotic-related plight to the salesperson there. She nodded at me and went on to explain that they used to make shoes parents like me bought that accommodated the bulk of orthotics beautifully, but they were no longer available. After trying several pairs (I couldn't help but notice the boys' section paled in comparison to the gigantic display of princess-pink shoes for girls), we found one last pair of Air Walks, the shoes she had referred to. They were white with awful, goose poop-colored camouflage strips across the midfoot and two sizes to big for him in order to accommodate the hardware I would place inside. Camouflage on a 3-year-old. How appropriate. Would this little detail make his orthotics invisible? My high school marching band shoes were delightfully dainty compared to these. Six dollars. I accepted the shoes and drowned my disgust in purchasing a pair of black and tan slingback heels with bows on the toes for myself.

From there, I went next door to the sporting goods store. It wasn't open, so I sat in my Jeep and watched an employee come out with a push broom, running the bristles over the sidewalk and pretending a girl sitting in her vehicle staring at him was the most comfortable thing in the world. When the doors were unlocked, I gathered my plastic bag containing Erik's braces and hunted down another employee to assist me in locating children's soccer and baseball socks, the only socks that seem to have the length to protect Erik's skin from the plastic on his legs. I would have tried them before, but apparently infants don't normally suit up in team uniforms (like I would know). They were not previously available in Erik's size. I ended up with two pairs of all-purpose athletic socks in white.

As it turns out, the socks look a lot like thigh-high stockings on Erik, but they seem to stay up. He wore his new orthotics for an hour yesterday. I crammed his feet into the new pair of giant shoes, trying not to curse under my breath, fastened them as best I could, and set him in a standing position on the ground.

I began to laugh.

He just stood there with his legs slightly bent, looking up at me as if he was afraid he was going to float away. I reassured him that he would get used to them eventually. He tentatively put one foot in front of the other and made it across the living room two inches at a time. I couldn't help but think of the time I put a sweater on my cat and watched her try to walk in it. Erik stooped to pick up a toy successfully and seemed to be as comfortable as anyone would be with sections of stovepipe around the legs.

Mission accomplished.

I was alone for most of the day yesterday. After dropping Erik off at school, I found myself with a sloshing bottle of Windex in one hand and a rag in the other. When I'm emotional, I clean. If you see me spritzing things with Windex, it's a positive sign. It's levels below angry vacuuming in terms of emotional distress. My roommate in college knew to stay miles out of my way when I was using a vacuum cleaner.

I was yanking food from the glass shelves of our refrigerator to make way for my mad cleaning spree when a Rob Thomas song came on the radio. I have heard this song a thousand times, but I never really listened to the words before. On Diagnosis Day, however, the words sunk right into my heart, and I smiled. I realize there is meaning in all of this, and sometimes I can catch a glimpse of it before it all fades into a big, dark mystery again. Once in a while, I can hear whispers that seem to be meant for me and me alone. Maybe I am going nuts.

You are doing the best you can. What you are doing is important.

Now that's what I call progress.

Two Years

Two years ago today my life without Williams syndrome took one last dying gasp and faded into my personal history. Time of death: 2:15 p.m. I was absolutely devastated, and the tears began to fall. I continued to cry for nearly an entire year. This past year was much easier than the first, and I am thankful for that.

It's funny. I can't really remember exactly how life felt before that rainy afternoon in a stuffy examination room at the children's hospital.

WS makes its presence known to me daily, whether I want it to or not. Because of it, we struggle in so many different ways, but I notice I smile through a lot of it now, even when things are extremely unpleasant or difficult. Either I can handle it, or I'm going completely crazy. Either one is okay with me. For example, I noticed yesterday the way I loudly announced each and every time I blew my nose or flipped on a noisy appliance, whether Erik was visible in the room or not. This habit apparently developed unnoticed over the last few months. I previously avoided making much noise around Erik at all, but now that he is adjusting to how noisy life can be, I simply give him a courtesy warning, as if I am yelling "fore" before chopping at a golf ball with a long iron. This practice may seem bizarre to others, especially if Erik isn't even home, but I seem to have forgotten to care anymore. I do believe that's what we call progress.

If you visit our home, you may hear me yell --

"I'm going to blow my nose now!"

"I'm brushing my teeth now!"

"I'm turning on the garbage disposal now!"

"I'm chopping walnuts with the food processor now!"

If Erik is near, he will react by turning my direction, dropping what he has in his hands, and immediately covering ears with his palms.

I just don't think about how I felt before D-Day much anymore.

There's no point.

Because life should and does go on, even if we clamp our hands tightly over our ears.