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.