Erik Quinn: The Heart of a Family: NANCY WAS HERE

Monday, September 21, 2009


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.



Blogger xyling said...

I'm really going to miss reading these.

3:19 PM  
Blogger Nancy said...

Thanks, JA. This was hard, but it was time. Love you. xoxox

3:20 PM  
Blogger Noel said...

Nancy, yet again you have me in tears but for a good reason. I really hope taht I am soon able to get where you are now. With enough hard work and support maybe I will get there yet :) Thanks to you for always being able to put into words the feelings that I have too.
Talk to ya soon! My love to you!

3:53 PM  
Blogger Lizard Eater said...

Will miss you, but I understand. Keep in touch, okay? And let me know if you ever get on Facebook.

4:14 PM  
Blogger Laura said...

Love you, my friend.

4:24 PM  
Blogger Kerry said...

I know you are right to listen to that little voice in your head, but I will of course miss your blog... although I am glad to say you are never far from me every day :) Yours was the first blog I found, the "original" that helped us all have a voice. I love you tons!

5:45 PM  
Blogger Michelle said...

I will sure miss reading about you and Erik! Thank you for sharing your story, and your words, they've touched more people than you realize.

8:02 PM  
Anonymous Anonymous said...

I wish you nothing but success, and above all peace for the journey.

It has been nothing short of pure pleasure to read in depth your seasons of pain, acceptance and joy.

Thank you, for allowing our paths to cross. I take your gifts and will liberally share what you’ve given.

Keep in touch!

10:40 PM  
Blogger Michelle said...

wow Nancy, you made me cry before work! Oh! I will miss your writing so very very much. I think your blog is so beautiful. I think you words are amazing. I think what you should do with those binders as personal as they are is have them published. No one can write like you! You words perfectly convey the thoughts/experiences we all have...imagine if you had read your own blog upon Eric's diagnosis...what an impact of hope it would have had : )
I love you and will miss your writings : ( xoxoxox

3:12 AM  
Blogger Tara said...

In tears, Nancy. I could not ever thank you enough for the words you put here. So many times when I was hurting you could put into words what I was feeling and I would just put a link to your blog on mine. I love you and Erik and can't wait to meet you in St Louis next summer.
Thanks for your support and encouragement - will keep in touch on facebook!

4:04 AM  
Blogger Amy said...

thank you nancy so much for your blog, and subsequent freindship we have forged over the years. i draw so much comfirt knowing you are "there" in out lives, and look forward to continuing this journey, our shared circumstance, togther for decades to come.

4:12 AM  
Blogger TrappedInColorado said...

God be with you. Peace and prosperity both spiritually and physically. Peace and love.

9:47 AM  
Blogger Dawn said...

I will miss your blog-- not just because it was about your child with WS, but because it was so eloquently written. I hope wherever your heart leads you in the future that some kind of writing is involved. And I hope I have the chance to read it. Much love to you and Eric.

11:21 AM  
Blogger michele said...

Dear Nancy, I've logged onto your blog almost every day, my little girl Freya has WS & will be 4 next week so much of what you have written has helped me along the way - I'm going to miss reading your blog, laughing out loud at 7 in the morning and even crying as the pain you write about is so close to me. Thank you so much Mx

3:20 PM  
Blogger jbgrinch said...

goodbye, live a great live and give erik a hug. I will miss reading your posts.

7:53 PM  
Anonymous Aunt Kat said...

"I am not a body. I am free. For I am still as God created me". Enjoy the spirit of that wonderful little boy...Hal and I think of him and smile!

8:06 PM  
Anonymous Aunt Kat said...

Postscript. You really must write. Somewhere. Your words go together so beautifully!

8:08 PM  
Blogger Life's a peach said...

Nancy, you and Erik have been part of my weekly read for the last three years, ever since I had an operation on my hip and you said have some morphine for me! You have spread comfort much wider than you will ever know, Erik and Brian are very lucky and I wish you all the best for the future, you deserve everything you strive for!

2:05 PM  
Blogger Life's a peach said...

I have been reading about Erik Quinn the Heart of a family for several months now, and one of the earliest blogs Nancy wrote was the shock she felt when she discovered that WS syndrome was part of her life. She writes that she felt like she packed to go to Rome, her passport and tickets said Rome, her guidebook and map was for Rome, but then she woke one morning and found herself in Amsterdam. When Simon was diagnosed it was similar - the party where all your friends are on the patio, you go inside to pick up a few more nibbles or a couple of cocktails, and when you walk back outside someone has shut the patio doors - your brain is already outside, ready to riposte that last remark you heard, ready to top the comment about the checkout, and instead you hit the glass, you find yourself on the floor surrounded by sausages thinking what happened. Your head for a couple of seconds is outside. "I wrote this in December 2007 when I had known you for a year"

5:16 PM  
Anonymous Anonymous said...

Gua said: Whew. It was the worst of times, it was the best of times. It was a way I could know what you were thinking without pressing you. It's never easy for me to move on. But I must let this go. I know you will bring something wondrous to this world, as you have these past years. I will be a part of whatever happens now, whatever direction you go.

Love, Mom

10:58 PM  
Blogger LZ Blogger said...

Nancy ~ This is such a bittersweet post for me to read. First, because I remember this picture of you and Erik years ago and I also remember the sadness that I felt for you. Not because of Erik, but rather because I knew that somewhere down the road Erik's WS would no longer be a problem for you. And that that little boy would ONE DAY fill your heart and soul with the love and strength that (I just knew) you would find in Erik. On the bitter side of the story, is the fact that I will miss hearing about the things that upset you and the eloquent expressions of them by your often candid words. I always wanted to reach out and hug you and say; "this will all work out for you someday, just hang in there!"" And now that it has, I will really miss you and your words about both your and Erik's adventures!
God has truly blessed you and now you are just beginning to realize it fully! I will MISS YOU! ~ jb///

4:11 PM  
Anonymous Heidi said...

You were one of the first people that I found that had a child with WS that responded back to me and commented on my blog even. I appreciate that so much. Reading your words was the validation for all my emotions that I tried to stuff down. I still don't really have that person or group that understands what it's like, but know that you helped me through a hard time and the simple fact that you reached out to me was huge.

please stay in touch, even if you aren't writing!

11:06 AM  
Blogger Teresa and Shawn said...

Beautiful, poignant, perfect. It may take me a month to stop by the blog, but I will miss you. I hope hope hope you go to St. Louis next summer because I would love to meet you, Erik, and Brian in person!

4:33 PM  
Anonymous Cortney Scott said...

This is actually the first time I have been to this blog but I stopped by b/c i recognized eric from a youtube video I had seen. My son also has WS and when we saw the video of his 3rd b-day party I believe..It gave us so much hope. My son is now 2.5 and I can see so many similarities now, but back then I had no idea what to expect. Seeing your adorable son made me so happy I cried. So thanks for that Video!Good luck with everything, I know our sons are such a gift but it is also such a wild ride at the same time! God bless and Thanks once again!!!

6:33 PM  
Blogger Life's a peach said...

Hi Nancy. Hope you, Erik and Brian have a wonderful Christmas!

10:58 AM  
Blogger Life's a peach said...

Hi Nancy, keep checking the page incase you come back! Hope you, Erik and Brian have a fantastic Christmas. Love to you all.

10:59 AM  
Anonymous Anonymous said...

This comment has been removed by a blog administrator.

5:06 PM  
Blogger Lisa said...

Stopping by to see if by chance you had posted again.

I can only imagine how much Erik has grown and how many new things he is learning. I fervently hope that your days are passing gently and with great hope for the future.

You are missed.

With warmth and light,

9:21 AM  
Blogger Katie said...

Over a year later, and I re-read this. Tears still flow, even though contact has not been lost by any means, I even briefly silently cursed your wonderful mother for giving you those folders wondering what may have been written if you had not recieved them. Selfish and ridiculous thoughts, I know that examined closely, make me appreciate how lucky I have been to have your writing and the writing of everyone else to grab onto when I have been in need. It makes me think how wonderful it is too that this once daily crutch of mine I used to rely so heavily upon is only used occasionally now to prop me up on the odd bad day.
Thanks for lighting the darkness.

2:07 PM  

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