Erik Quinn: The Heart of a Family: Three Years

Friday, March 13, 2009

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.

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Blogger Leesa said...

You are stronger than I will ever be.

8:22 AM  
Blogger Tes said...

Nancy, I heard this song this morning and I found myself thinking of Lila, not so strange is it?. I recently blogged too about how our life would have been different, I wish it was. but as people say be careful what you wish for cause it can go both ways. Here I am at 6 years under my belt and I still feel like I am floating with my toes being bumped by sharks. However we feel in side, we will continue to work for our kiddos because we love them and because we love them we will most likely continue to grieve. I hope you can feel my arms around you giving you a hug because I am.

8:31 AM  
Blogger Noel said...

Thinking of you and understanding where you are coming from!

12:15 PM  
Anonymous Little brother said...

I can't imagine, I cannot possibly imagine how you felt and feel every day. You describe it so well, but it is such a difficult thing and I admire how what a great mom you are-the toughest job in the world made even tougher. I know that Erik was intended to be raised by you, no one could do a better job. Through all the bad times, the days where there are no smiles and hugs, just screaming and "I hate you", know that you are doing the best that anyone put on this earth could do and you have so many people that admire you for it. I love you, big sis.

3:48 PM  
Blogger Dawn Low said...

Nancy, although we have never met, I think you are a phenomenal mother. And you express what so many of us feel in so eloquent a way.

4:14 PM  
Blogger Julie said...

It is like you are writing something I am telling you. I have for the most part embraced who Noah is, up to this point. I shamefully have had MANY days lately that I want to scream at him, "act normal". Thank you so much for letting me know it isn't just me.

7:54 PM  
Blogger Laura said...

Seven years into it, and I still feel like I don't know what the heck I'm doing most days. I'm not sure if that goes away. I too, view every we make it through, as an accomplishment...a triumph...a win.
I know my life would be different without WS, but when I take that step back and look at the big picture, I can't honestly say it would be better.....just different.
Just know your traveling this journey with so many who 'get it' and who love you!!

5:34 AM  
Blogger Heather said...

sister, we get it. Honestly. I am grateful to be traveling down this crooked road with Moms like you.
Lots of love, Heather

10:43 AM  
Blogger Guanogirl said...

I really love reading your blogs posts. You write beautifully. April 17th will be two years for us. It is such a roller coaster. It helps me immensely knowing there are others out here who really get it. Good bad and ugly. WS is ugly,the way it attacks our babies before they are born. But man what great kids they are, what life lessons this ride teaches us. How strong you feel when you tackle the next challenge. Keep smiling, keep fighting the good fight, don't be afraid to cry and scream. Your friends are listening.
:-) Robin

5:26 PM  
Blogger Aspen said...

*sniff* I hear ya sister. Everyday I miss myself as the "pre-diagnosis" mom.

12:52 PM  
Anonymous Karen said...

I'm glad that I came across your post. My son was diagnosed February of 2008. I've read and have been told that I will become such a better person. I haven't and have been waiting for that day to arrive. I don't understand how bitter I can be, and at the same time feel lucky and happy to have my son just as he is. I have felt torn and confused by the way I feel and what you said explains exactly what I'm going through ("It has hardened my personality and softened my heart at the same time.") I was afraid that I was the only person that felt this way...thank-you for allowing me to not feel so alone!

11:59 AM  

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