A Very Strange Love Story

For those of you who asked, I finally mailed that letter to my church. It took me well over a week to do it. I'm not optimistic about seeing any results but insist on making my presence known and educating as many people as I can with the words that seem to come to me naturally. The fact that it is easier for parents like me to isolate themselves at home with their personal challenges so they don't inconvenience anyone is simply not acceptable to me anymore. And that is something I feel very passionate about. I feel like I came across the article on inclusion I enclosed with my letter for a reason. It illustrated my concerns perfectly. I guess I refuse to just go away anymore.

I have more than a little fire in my belly.

I recently had the opportunity to be interviewed by our local paper about our journey with Erik, and I accepted. The article will be featured in the health section next Thursday. The topic is about people who came up with their own diagnoses using the Internet. A woman was apparently interviewed who diagnosed herself with a horrible ailment, but it turns out she didn't have it at all. And then there's me, an experienced medical transcriptionist who considers herself the "Google Queen."

In the end, after we were finally told something was officially wrong with Erik by a medical professional and that we needed genetic testing, it took me less than 30 minutes to diagnose my son correctly with the help of the clunky electronic box humming away on my desk. In my career, you only need to know what key words to type in to discover exotic diagnoses and laboratory tests that physicians mumble but expect you to type into medical records perfectly. I very quickly narrowed down a list of genetic abnormalities to determine our worst case scenario, and WS was number one on my list. I remember telling my friends the week before we received our official diagnosis that I was most afraid of Something Called Williams Syndrome. The local reporter interviewed me on the phone yesterday, and I explained how I came across a cartoon caricature that illustrated some very exaggerated facial features of Williams syndrome. He asked if I could find that drawing again, and I asked him to hold for a minute, not knowing if I could after almost three years.

My fingers automatically typed: "facial features Williams syndrome"

There it was. That awful, clown-like drawing that rocked my world and broke my heart forever. I hadn't seen it since that horrible day I realized what we were dealing with. I told him that I held up Erik's photo to the ones on that web page, and the mysterious puzzle pieces of the last 17 months of our kid's life crashed together all at once. Everything suddenly made sense. I remember trying to talk myself out of my suspicions but that I finally had to move the portrait of Erik off the wall above my desk while I worked because I just wasn't ready to believe it was true.

I consider telling our story a giant step in my healing/grieving process. I can now semi-objectively explain things to others who know nothing about me or what we have gone through and feel proud of what we have overcome and accomplished. Hell, I am proud of what we have SURVIVED.

Today I got Erik up from his nap, and he joined me on the couch with his favorite fleece blanket and the infamous, progressively flaccid Stinky Dog. I pressed my lips tightly against Erik's forehead, savoring the wonderful heat and scent of him, and I concluded that he is the subject of the greatest love story of my life. Just like any mother would say. Except our story started out with an incessantly screaming infant, doctors' visits, doubting my skills as a parent, genetic testing, medication, and sleepless nights wondering what the hell we had gotten ourselves into, all culminating in the sickening realization the universe had randomly chosen to strip away some of the precious parts of ourselves written on the genes we attempted to give our son. All to the soundtrack of some of the people around me telling me that God hand selected me to be the mother of a child with special needs because I was strong. That Erik's condition was a wonderful gift. That I had essentially been singled out for this while I was forced to watch other mothers have babies with all of the parts they were intended to have.

I suppose that's what lit the pilot light in my belly to begin with.

In the end, the pain has dulled to an almost tolerable, familiar level. The struggles are different, and I am more effectively equipped to overcome them. And, most amazing of all, the love Erik has returned to me has inspired me to shout our story from the rooftops. It is turning out to be a beautiful thing, indeed.

A photographer from the paper arrives tomorrow to take our photo together.

I Should Have Said...

To the gentleman at the stables: Thanks for informing me five minutes after you met me that Erik "needs a sibling." Wow! I had absolutely no earthly idea. Now I can follow your advice and start being a good mother. In the meantime, though, please get out of my uterus. I am a very busy woman with things to do.

Oh, one more thing. NEVER label anybody's child you know next to nothing about "severely mentally retarded," like you did my son so casually, unless the parents say these words first, demonstrate they are comfortable with them, and/or they actually even apply. I know parents whose lips have yet to utter those words because of the pain and shock they felt the first time they heard them. I could care less what your credentials are, what your title is, or where the hell you happened to work in the past with developmentally disabled children. You seem like you mean well and have a good heart, but your words will undoubtedly someday destroy a parent who is new at this when you blindside them as you did me.

Sigh...

Happy Fourth of July

"Basically, it's hotter than a snake's ass in a wagon rut."

-- Adrian Cronauer (Robin Williams), Good Morning Vietnam

I'm sweating in my bathrobe at 9:15 a.m., and, to top it off, I just dragged myself out of bed! I have been sleeping incredibly well lately, with actual dreams and everything. Last night Lisa from next door called and asked if I would like to try a concoction she created from the thick meat of crushed dark cherries, mint leaves, diet cherry sparkling water, and a little Crater Lake vodka. We sat on her back deck while her husband pushed the lawn mower around the yard. The sun was sinking behind the mountains to the occasional sharp crack of fireworks that left smoky, brown smudges on the evening sky. After we went inside and watched a little of America's Got Talent (Who can resist watching a man prance around in platform heels?), Rob took me back to my door in their sputtering but surprisingly speedy golf cart. When I arrived, Erik was at his bedroom window bouncing up and down, his mouth forming the words "GOLF CART!" behind the glass.

Lisa told me she wishes she knew me better after I had Erik. She is one of the few people that admit they knew something was wrong with our baby right away. I explained to her that not many people did, and the ones who knew were understandably silent. I said that that there's just no great way to tell someone you think there's something horribly wrong with their baby. Even if there was, most of the people who love us were praying that they were wrong. I wish I had known her better, too, but, in any case, she does me a lot of good now. I am so lucky to have all of the friends I do. Most of the friends I have are of the tell-it-like-it-is variety. They tell me the truth and will defend me to the end if I need their help. I just don't ask them if my bottom looks big in a new outfit unless I truly want to know the answer.

The Wall Street Journal article about mainstreaming our children with WS has finally hit me. Basically, it was stated that mainstreaming children with special needs like WS is backfiring for a variety of reasons. The example they chose to use was unfortunate, as this student had what was obviously severe WS, and her teacher, who had not been given appropriate training, admitted she hated her job so much that she was becoming physically ill from the stress of handling children like these. I think this article was upsetting on many levels, but I am trying to turn the disappointment I feel into fuel for the battle in the school system. I am not out to create a perfectly normal life for Erik or pretend he doesn't have challenges. Normal is simply not going to happen one hundred percent of the time. What I plan on doing is providing him tools to live the life that he desires, including the best education possible to mainstream him in the real world, not just a classroom setting. If something works, we'll go for it. If it doesn't, we'll try something else, plain and simple. I will fight for whatever works, no matter what it takes. I may end up on the state capitol steps with a large sign at some point, and I'm okay with that. I know I won't be alone. The goal is to educate my son and train him to lead a happy, productive life. If there's one thing I have learned, it's that school is NOT and will never be the real world. I was very relieved to find that out for myself. The real world is so much better than I was led to believe as I sat in various classrooms. It wasn't until I left school in my 20s that I realized I could do anything I set my mind to.

How sad is that?

On that note, I need to work out and prepare a potato salad. My parents are coming to visit this evening, and I am barbecuing steaks and chicken. We will sit on our back porch with warm bowls of fluffy, sweet kettle corn and watch the fireworks explode off the cinder cone in the middle of town. We have a great view from here and will have the hoses ready!