NANCY WAS HERE

I've been staring at the page for what seems like days
I guess I put this one off for a while
Did I see a tear fall from your eyes
Or did you laugh so hard that you cried
When I served my secrets on a silver tray to you

-- "Every Word Was a Piece of My Heart" (Bon Jovi)


This is the most difficult post I have written so far. In fact, I'm not sure how to begin.

When I came back from a short trip to the valley this weekend, my mother gave me a couple of orange 3-ring binders with photos of Erik and our family covering each one. Inside I was shocked to see at least two years of what I have written on this blog and hundreds of your comments, too. She had previously printed them all for my elderly grandmother. When my grandmother passed away, the folders came back to me. Knowing that my grandmother had read a lot of what is here is strange and comforting at the same time. We never talked about my blog. Or Williams syndrome, really.

I have always enjoyed writing stories and journals, even before Erik was born. When Erik was diagnosed, it felt natural to start writing here. When I was discouraged, I heard a voice. The one I previously told you about. The one that said "SHOUT."

Seeing my words on paper makes me more than a little uncomfortable. I don't know what to do with them. They are much too real somehow. It was easier to neatly place them here and turn the computer off when I was done to keep them contained. This morning when I casually opened the notebooks and began flipping through the pages, thousands of words seeped back into me against my will. They are difficult to read, sharp, and slightly foreign. I was absolutely shocked by my own honesty, as I have more than a little difficulty saying anything more profound than today's weather report out loud to anyone outside of my closest friends and family members. I found myself poring over each page, unable to look away. Reading my words brought each forgotten experience with Erik back in Technicolor. If Erik hadn't cleared his throat and loudly but politely reminded me he had requested waffles for breakfast, I would still be bent over my kitchen island, elbows glued to the counter, reading. As it turns out, I have written quite a bit here.

In fact, this will be my 595th post.

I have learned a lot since I learned to shout. The diagnosis of Williams syndrome has profoundly changed my life. I have been reminded in many ways that my story is not remotely close to being unique. Others walk this very path every day and have done so for centuries. Most of them just don't seem to talk about it. I know that I have been given a strong desire to put it into words, and I have done that here for years now. I am so thankful I did it, because I can now look back at what I have written and see documentation of the progress I have made. I admit that I began writing simply to unload all of the searing pain I felt at the time and didn't really know or care who would actually read what I wrote. I just wanted to be rid of the stuff. As time passed and my pain subsided, my focus shifted, and I ended up meeting some of the most amazing people around the world who have inspired me to no end. What a gift that has been. I have even had the opportunity to meet some of you and consider many of you lifelong friends.

I have learned that despite WS or any other challenges I may face, I will survive. I have learned there always will be horrible days. Days when tears don't seem to dry. Days when my heart hurts so badly that it feels like I can't physically bear living another minute. However, now I know otherwise. I know my own strength, and I simply grit my teeth until I can breathe again. It's old habit now and doesn't scare me in the slightest to let my feelings flow through me and be gone. Fortunately, the bad days are so spread out now that I no longer dread them. If anything, they tend to sneak up on me, make my life a little hellish for a short time, and then disappear as quickly as they came. I know that they always will, and I'm okay with that.

The boy I originally wrote about is gone, too. No longer do I have a slumped over, drooling infant of a child who can't hold a spoon. He asks me to watch his favorite shows on television, is learning to read, and loves sweets. He can tolerate noisy environments and has friends. He has strong opinions. He likes saying things in Spanish. He loves music and jokes. He walks, runs, and jumps. I have finally allowed the dreams that I had for him before he was born go and am now getting to know his own. I have learned that what is considered a "birth defect" has given him wonderful gifts and abilities other children don't seem to have. I am completely in love with this boy and the people he has brought to me, although the journey we are taking will never be an easy one. On some days it still seems impossible, but I know it's not.

The voice I hear from time to time has been in my ear again. It has been a bit of a pest for these past few months, and I know it's time for me to listen to it. I'm being pulled in another direction, away from my writing here. I have no idea what this means, but I am confident I will know what to do when the time comes. I think wanting a change is a very positive sign.

As I thought about writing this post, I realized that shouting was my way of making my experience real to myself and the people around me. To validate my own role as a human being experiencing something painful and intense. To communicate my feelings without having to explain anything out loud and risk bursting into tears. A few of my friends and relatives stopped reading this blog because it was "too hard" or "too sad." I feel sorry for them because they missed out on the joy I have discovered along the way. Every post here, happy or sad, has brought me healing and understanding.

In the end, I want to leave some evidence that I was here so that others might come across it and perhaps believe that they will survive just like I have. That the pain will fade to a tolerable level and that everyday life will creep in again. That laughter and grocery shopping and car maintenance and relationships and sunrises will take over once again with a new, unexpected beauty. That each and every one of the accomplishments of their children with WS will make them feel like they can touch the heavens with their fingertips and how sorry they might even begin to feel for the parents who have it easier than they do -- because they might never know that particular kind of heart-busting joy after so much struggle. That although they might see disability in their child as a curse, they also might eventually appreciate the gifts that it brings them, too. That no soothing cliches or advice here or anywhere will provide them comfort until they are ready to receive it. That it's okay to be angry, grieve, ask for help, or even laugh at the ridiculous mixed in with the tragic. To tell the rest of the world to get bent when necessary and do what works for them, no matter how it looks. That they will be okay, but that it's perfectly fine not to be in the meantime. I have learned that being "okay" takes a hell of a lot of time.

So I'm hanging up for now. To everybody who has come here to get to know me and Erik, thank you. You have helped me each and every step of the way, whether your life has been touched by Williams syndrome or not. I am amazed that the comments that have come my way have been almost nothing but supportive. There has very little judgment, hate, or pity -- just love. That's exactly what I needed to survive.

And I have.

For those of you who are new to this journey with your child, I am leaving my words here as long as they are allowed to remain. My heart aches for you, yet I quietly celebrate what you will learn and love with time. You will also quickly learn that you are part of the same strange, beautiful family, and you will hear the echoes of your own story from unfamiliar people and places over the years. We all seem to be singing the same song.

My only real advice is that if you lose your way or become afraid, stop looking so far ahead. Instead, concentrate on the ancient path worn into the earth in front of you. Take one step at a time. That's what I have done and will continue to do for the rest of my life. Just don't forget to glance at the rock beside you and see what I have carved there over the years before it all fades under the carvings of others destined to follow us. If you can still read what I have written, maybe you'll wonder who I was and where I ended up.

Maybe you'll even try to look me up sometime.

Wounded

This week Erik got off the school bus with a relatively deep scratch across one cheek. This was paired with the recurrent wound that appeared a few days earlier on his nose. He sustains the nasal injury every few months, and we are never able to determine its origin. A round scab simply materializes in the same place, perfectly centered on the bridge of his slightly upturned nose like a dermatologic crop circle. With the additional flesh wound freshly etched on his cheek, he looked a little like had had just finished a UFC cage fight.

I asked Erik what happened, not really expecting an answer. He stated very matter of factly that a little boy (who shall remain nameless in the interest of preventing vigilante justice) had scratched him at school.

When we arrived at school the next day, we were greeted by apologies that we had not received a phone call about the incident. Because Erik's teacher has been terrific about calling me about Erik's accomplishments and occurrences in the classroom, I reassured her that I was not upset. The teacher confirmed the very boy Erik named had scratched him while they were both standing in line at the sink to wash their hands. When confronted, the boy had apparently confessed, but an adult hadn't seen exactly what occurred.

I sometimes witness Erik standing too close to other children, making them visibly uncomfortable, perhaps asking them a hundred times what their name is, despite the fact he was in their class last year, or attempting to spark a conversation by emitting animal noises. He often doesn't understand that he is surrounded by a tough crowd and continues on with his act, which is sometimes quite painful for me to watch. Some children simply walk away. If they know their parents are watching, they will often stand still and attempt to be polite, but I can easily see their true feelings just underneath the surface. Children are much too honest to hide much for very long. At this age, they are beginning to be slightly cruel and very competitive, loudly pointing out Erik's differences to others to pad their own budding sense of self. The more curious ones ask me questions about Erik's behavior, and I am slowly getting used to providing simplified answers. There are some who don't like having someone who is so different pressing his nose directly against theirs.

In this case, what happened will remain a mystery.

Maybe this child accidentally scratched my son with an unruly hand making a sudden, uncontrolled motion. Maybe he was throwing a tantrum of his own. Or maybe he waited until the adults weren't watching and hurt the strange kid who just refused to get out of his face. In any case, Erik undoubtedly loves this kid today every bit as much as he did a week ago.

And I suppose that is one of the things that makes my son so "strange" and "different."

First Day of School 2009

Erik's last year of preschool started today. I left him in the humming chaos of the classroom and made it to my car before my eyes started to water.

Life Goes On

Ob-la-di, ob-la-da,
Life goes on, brah
La la how the life goes on
Ob-la-di, ob-la-da
Life goes on, brah
La la how the life goes on

-- "Ob-La-Di, Ob-La-Da" (The Beatles)

We had yet another dentist appointment yesterday. I have been there so often that I feel like I should at least have my own coffee cup in the employee lounge. When we were first scheduled for what they call "fun visits" months ago, I was a complete skeptic. It seemed that for months Erik's anxiety about the dentist was only intensifying. Smack dab in the middle of the process, the wall of gleaming teeth that was Dr. Mike retired and was replaced by a comely 12-year-old named Dr. Brent, which only served to sour my attitude further. In the end, though, the efforts that originally seemed futile have actually worked wonders. Color me surprised.

Yesterday after Erik and Stinky-Dog rode the orange examination chair like a lame mechanical bull, Erik was allowed to play with the suction tube, which he considers one of his beloved vacuums. He ran it over Stinky-Dog's scruffy face and flaccid body, and the stuffed animal chuckled and begged Erik to stop in his throaty, pack-a-day grumble. By the time Dr. Brent joined us in the room, Erik easily opened his mouth wide for the first time and demonstrated that his teeth were completely free of cavities. I was informed that our brushing techniques were obviously much more effective than the ones typical children used on their own teeth (I allowed myself to feel a little smug, as this feeling is rare and quite precious). Erik even allowed a nasty-tasting fluoride solution to be swabbed over his teeth with a brush and successfully vacuumed out the excess on his own with the suction tube for the very first time, seeming to enjoy the juicy sound of it. He was rewarded with two balloons and a brief session of stimming/spinning on the wheels of the toys in the waiting room, where I discovered a Ms. Pac Man machine. Score.

This summer has been one of change. I have made some difficult decisions regarding my personal life and am striving to be a better friend, daughter, sister, aunt, mother, and wife. I desire to feel more connected with the outside world again and have sought help to sort things out. I was amazed at how intensely the emotions I felt a few years ago easily bubbled to the surface like new when I described my experiences out loud. Today I meet a part of my father's biological family that my parents recently discovered through their research over the years. From what I have heard, they are amazing. Ironically, I lost my grandmother last week, who was a very large part of my childhood. Our relationship over the past few years has been difficult, but her love for Erik seemed to smooth things over and brought us together one last time, which happened to be the day before she passed away. I have come to believe that one of Erik's jobs here on earth is to bridge the sometimes incredibly profound gaps between the people around him, and he is an absolute expert at it, even at the ripe old age of 4.

Today we attend our last IFSP (IEPs begin next year). We are hoping to say goodbye to diapers this year and are excited to witness more of the progress he has shown us every year.

Break Time

I'm taking a break from writing, but I'll be back in September, hopefully with some amusing blog fodder. We have our IFSP and school in the very near future.

I Cast All My Caries

I took Erik to the dentist today. Dr. Mike apparently retired, so Dr. Brent took over. After I got over the initial shock of having what appeared to be a sixth grader take care of my son, Erik made some comments under his breath about one of his favorite television shows. As it turns out, Dr. Brent does look an awful lot like Steve, the original host of Blue's Clues. He just needs that fruity striped shirt.

The hygienist was able to take Erik up and down in the chair, and he is now an expert at operating the plastic suction tube (or, as I call it, the little "vacuum"). He used this device on Stinky-Dog's snout and laughed maniacally.

Although Erik stayed in the chair and remained fairly calm, he was obviously annoyed by being touched by the staff. Getting Erik to open his mouth is still almost impossible without prying it open with torturous dental devices, but they gave it the old college try. He was eventually distracted by the ominous noises coming from the next chair and became limp and semi-compliant due to his anxiety. Because of this, Dr. Brent was able to get a better look at Erik's bottom teeth. He then asked me if Erik had chocolate for breakfast.

Uh oh. Not a good sign.

We have two more "happy visits" scheduled for the next month to try to get a better look at the suspicious tooth. The dentist was unable to see much of Erik's top teeth at all. He very gently mentioned the "S" word to me.

Sedation.

I have more research to do on this topic about what is required in a dental setting, but I would be lying if I said this didn't scare the dickens out of me. I was barely okay with it when he was in a cardiologist's office surrounded by crash carts.

I allowed Erik to play with the toys in the waiting room for a few minutes on the way out and tried to shake off the curious stares I received from the other father who was at the next station in the examination area. I have to laugh because we make a complete scene at each and every appointment in offices all over town. Erik is always behind the desk helping schedule his own appointment, rolling on the floor trying to get a better look at the wheels on clinical chairs and tables (and asking where the lugnuts are), or singing songs in his own language at the top of his lungs. And he doesn't open his mouth at all without making some sort of loud sound. When they ask him to open it wider, his volume just goes up. Erik also cracks everybody up with his quips, Stinky-Dog voice, and reactions to things. I am quite confident that nobody will ever forget us.

And if they do, we'll be back for another round in two weeks!

Go Tori! Disability Awareness Day 2009