Erik Quinn: The Heart of a Family: A Very Strange Love Story

Thursday, January 29, 2009

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.

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Blogger Heather said...

almost tolerable. Exactly.
Have fun!

4:30 AM  
Blogger Noel said...

I am so proud of you. Please, post the article or email it to me I would love to read what they end up writing.

5:51 AM  
Anonymous Erik's Auntie Dee~ta said...

I knew you when...

Yes, please do share the article and photo!

What next? Television? The big screen? A published book???? hint hint hint

Have fun today at your photo shoot... super staaaaaaaaaaaaar!

7:56 AM  
Blogger Tes said...

So very well said (as always) my friend. Best wishes for a fun photo op, you represent all of us here in the WS world!

9:40 AM  
Anonymous Anonymous said...

I diagnosed Sean in a similar way. I know a lot of the medical jargon too. I'll never forget when the blood left my extremities as I looked at pictures after googling "low nasal bridge". From there it was a matter of "deciding" between Lowe's Syndrome and Williams.

I hope your newspaper story helps out another family; maybe it will plant the idea to research things out for themselves. For me, it was hard to hear, or read, the truth, but far harder not knowing.


2:26 PM  
Blogger camille said...

I want to read that article too!! And if possible, I'd love to see the photos they take. You might get a really great family one from this!

Good for you for telling your story. I still can't quite get through it without tears but hope someday to get to that point.

This is definitely a step in healing. Way to go, baby!

5:44 PM  
Blogger Michelle said...

how neat that you had the opportunity to do this feature in the paper! I hope you'll be able to share the article when it's published!

6:39 PM  
Blogger xyling said... if you type "facial features Williams syndrome", the number three hit in the Google image search is a picture of Erik!

10:42 AM  
Blogger Aspen said...

I too would love to read that article. You somehow manage to ALWAYS write down my exact fears and worries during that first few years of our little guys life. Oh how I would have loved to be your friend during that time.

2:38 PM  

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