Erik Quinn: The Heart of a Family: Yellow

Saturday, March 08, 2008


I'm sorry I haven't put my fingers to this keyboard much over the past week. The illness Erik continues to have was transferred via a river of drool to my own body. I hate to blame anyone in particular for my misfortune, but I suspect Stinky Dog, the recipient of a great deal of my son's love, could very well be the culprit. Yesterday my father and I were calling this pathetic, innocent-looking stuffed animal "Typhoid Stinky" as Erik asked us all to kiss the puppy's saliva-soaked, germ-infested nose. I have felt like a wet rag for days and am now losing my voice. For the moment, though, I am enjoying sounding exactly like Lauren Hutton. It's kind of sexy. Just don't look directly at me, as that will instantly ruin the effect. Nobody thinks red-rimmed nostrils are attractive. Nobody I know, anyway.

I attempted to chicken out of the WS convention scheduled for this summer. My dear sister-in-law and her family just received news they will be unable to attend in July, and I called my husband immediately, suggesting we fly instead to Key Largo (I saw it on television and immediately wanted to dip my toes in the sea there). No dice. He said he thinks the convention is important, and I had to agree. I just wish I wasn't so scared. Yeah, I said it. I'm completely freaked out by the whole thing.

The packet we received to sign up for the convention is completely overwhelming in itself. It actually has a table of contents, for Pete's sake. There are a billion classes we need to sign up for now, and we need to determine our child care needs during the convention NOW. However, as I flip through the guide, I spot many topics that interest me, including those regarding dental and vision issues, future employment, teaching those with WS how to read, special needs trusts, cardiovascular and anesthesia concerns, transition to kindergarten, psychotropic medications, and GI issues.

I suppose that it's looking into the future that terrifies me. I have been surviving beautifully by taking this thing one day at a time, not glancing up much to see what's ahead unless absolutely required to do so. It's just too scary right now. I can barely look at an adult with WS. I only met one last year and can barely look at the videos of them.

A few days ago, someone questioned me about the severity of Erik's WS. This actually happens regularly, as most people are quite impressed with Erik's abilities. They queried, "Erik's Williams is mild, right?"

The truth is, we don't know. From what I know, my kid's brain is likely smaller than most brains. The convulsions are likely shaped differently than most brains. If jacked-up brain structure and function can be mild, sure, maybe it's mild. Erik is healthy. However, the truth is, there is no way to make this diagnosis feel "mild" to me. Williams is an absolutely horrifying thing for a first-time parent to discover in their baby. I felt as if our family was almost contaminated by something dirty for the first year. However, we learned to live with it and tried to move on, enjoying our child immensely, trying to take in all of the "normal" that we can. I am determined to enjoy everything most mothers do, because, damn it, I feel as if I earned it by now. I'm sick to death of being separated from other children by panes of glass. Give me birthday cake and friends and playgrounds and toys! Now! Don't we deserve those things? At the same time, all of these things are extremely difficult or impossible for our son to enjoy. There is a lot about Erik's syndrome that isn't mild at all. It is disabling on a daily basis, and I try to smooth out the bumps as much as possible. There is always something that throws a wrench into Erik's ability to enjoy life at a simple, "normal" level.

Well, everything except birthday cake.

Am I ready to attend a convention surrounded by people with WS? Especially adults who seem so dramatically different? Hell to the no! I nearly break out in a rash thinking about it. Looking into these faces means I'm quite possibly looking into Erik's future. That, my friends, is the hardest thing I have EVER had to do. Why? Doing this means facing the thing I have to admit I hate with a purple passion. The thing I silently complain that I didn't sign up for and am only barely handling mentally most days. Worst of all, it means admitting there is a part of me that doesn't want my kid to look like "they" do. Act like "they" do. Be like "they" are.

It means I must admit that I am that shallow.

It means that to succeed, I must admit that "they" are part of the special family my son belongs to and somehow muster enough courage to accept these people and this diagnosis as part of my life once and for all -- despite my own pathetic limitations and fears. This will likely be the biggest reality check of my life. There will officially be no more room for the luxury of denial after this convention. I will be required to let go of what remains of my old expectations that formed the glorious day I found out I was carrying my son inside of my body.

Because some things were not meant to be. That's reality. And Erik will always be my Erik the Magnificent, WS and all. It's easy to love Erik, and that comforts me.

I have to go.

I once burst through the front doors of a building to take greedy gulps of night air into my lungs when a social situation became unbearable. Shortly before this, I quietly backed out of the group of people I was surrounded by and made a quiet exit. I have always required time alone, and my fight or flight kicks in beautifully when I am overwhelmed. I can see myself doing the same thing again in a less dramatic way during the convention. When I arrive in California, I will be sure to locate a dark corner in the hotel restaurant or bar where I can enjoy a 7&7 in front of Fox News and a copy of USA Today, away from all classes and any meaningful brain activity whatsoever. I think too much as it is. I also plan on finding the gym right away and hope I will have enough strength to spend at least part of each morning there, sweating out any moisture that might threaten to spill out my tear ducts later.

As long as I have a little corner to myself, I'll be fine.


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Anonymous Anonymous said...

Gua (Erik's gramma) said:
Oh, man, you said it all. The thick, green Dare to Dream schedule is tucked near my computer. I Dared to Look once, and was absolutely overwhelmed. What do I want to hear? What do I want to know? I admit that even after two years I fear to lose my innocence. And I'm an old person, to boot! We'll be there. I don't know in what shape, but we'll be there. I look forward to the second convention I'll go to. It'll be much easier than this one, I can guarantee!

Love, Mom

5:07 PM  
Blogger Penny said...

I went two years ago and it was very emotional. I imagine I felt very much like you do now. There were many things that made me cry, much of the time I was overwhelmed and even sometimes, I saw gliimers of hope. All in all, I would do it again.

7:10 PM  
Blogger Rosemarie said...

Attending the conference is going to be a huge step for you. I say go for it, and be the best advocate for Erik. Education on WS and camaraderie will be beneficial. Nevertheless, when you feel overwhelmed disconnect in the gym or in front of the television. It’s very understandable.

I joined a social network Friday regarding my health issue and feel hope rising. Furthermore, my intention is to attend a national conference sometime in the future as well. I know I can count on you for guidance when it's my turn.

10:45 AM  
Blogger Julie said...


First off you are not shallow. I think none of us want our children to be "different". Just the other day Noah's PT mentioned she was keeping an eye on his feet because she thinks they are extremely flat and he may need an orthodic insert. I thought that's fine as long as we don't have to wear braces. With summer coming they would be hard to hide. Then I was ashamed of myself because it never even occured to me how uncomfortable it would be for Noah, just what would people think. He could care less. This is his old moms hang up. I went to a seminar in September and I learned alot, but I was very overwhelmed when I left. I had a huge headache. I fought the tears the entire time. I also felt like I was finally around people who actually cared about what we were going through and who understood because they were living it too. I defintely plan on going to the next convention. This one is to far. You are so lucky your husband wants to go. I somehow think when I attend these things I will be on my own. Some of this stuff is just to much for Scott. I will be praying for God to help you deal with the realities you will see. I hope you find some good in with the bad.


11:25 AM  
Blogger Kim, Grandma to Ava,ws said...

Shallow? I think not. I can certainly understand your fear. When we attended a WS party in December I nearly keeled over when I saw my granddaughter's future. Sucker-punched, I was. Before long, though, I felt this incredible sense of community--and love. And then it felt okay, truly okay.

I have faith in your coping skills, Nancy. I just wish we could afford to go to the convention, because I would dearly love to meet you and your family. You mean so much to me:)

Love, Kim

2:54 PM  
Blogger Heather said...

I know everyone is different, but when we found out a little over a year ago, the first thing we needed to do was meet an older person with WS. I just had to see for ourselves what we were dealing with. What I have found is that you can't tell for sure either way. I chatted with a 13 year old who conversed better than me. She was very smart, and held a very good conversation. Even lectured us about our crutches. I've met 50 year olds that could barely form an understandable sentence, and I've met people with WS on every level in between. Kind of like people without a genetic disorder. You just never know, WS or not. I think you need to go to the convention if you are able for Erik's sake, and forget about your fears. You may not have a chance to go to another one for a long time. I can't go this time, and have missed 10 years of them. Who knows what kind of valuable info i am missing out on. By the time I can go he will probably be well into his teens. I have missed so much. Please don't let your fears get the best of you. You are a warrior. You can do it!

5:35 PM  
Blogger Laura said...

We went to our first Convention in 2004, Michaela had just turned 5. The biggest mistake we made, was attending anything and everything. Mark and I split up and each went to totally different sessions so as not to miss a thing. We went to every activity offered. There was no down time. We were exhausted and totally overwhelmed.
At the last convention in 2006, I only went to the sessions that pertained to what was happening with her then or what would be happening in between then and the next convention. I found that most of the topics stay the same, which is good. So you can attend them when they pertain to you and Erik and not have to cram everything in at the one convention. The other great thing is that all the sessions are recorded, so you can buy the cd's and get all the information on the things you didn't get to.
At the last convention, we also made sure we had some down time and didn't go to all the planned activities. It made for a better time.

You have to go Nancy, I am soooo looking forward to meeting you and Erik!

6:16 AM  
Blogger Tara said...

I'm unable to go to the convention this year but am hoping to go to the next one. Everything you mentioned are things I've thought. I'm afraid to go and see adults - seeing what the future holds for me. I think so much of this I still tell myself it's not real. It's just extremely hard to accept. I think I still like to live in my own little world and believe nothing is different.

6:53 AM  
Blogger Every minute counts.... said...

The first convention I went to was very emotional. I left one of the sessions because I had to have a ggod cry. Just got up and walked out in the middle and ran to the one room that was empty, called by best friend and let it all out! It is overwhelming BUT think about all of the connections with wonderful people that you have already made..because of WS. Plus, you have the safty of knowing, there will be a few of us there that you will recongnize. A friendly face that you "know" will surly help make it a little smoother.

Looking forward to meeting in person,

6:58 AM  
Anonymous Auntie Dee-ta said...

Oh Nance... how we all sooooo wanted to attend the convention and be there for you guys!!! UGH! We told the boys that our President needs their Daddy once again! LOL!!!

You will be just fine... I think one day in your future you will be a speaker or an author for WS. You have the passion, talent, smarts, and the list goes on... but for now, one step at a time... attend a convention first! I think Brian and you would be awesome speakers at a convention! Even though I will not be there in person I will be there in my thoughts and prayers!!! Always in your corner and always/always on Team Erik!!!

Hope you are feeling better "Lauren Hutton"!!

Happy Monday and hope that you all have a wonderful week!!!

7:39 AM  
Blogger Jennifer said...

You are positively NOT shallow. We all want the best for our children. When we found out about Corey's CHD, I asked if he would look like other kids, act like other kids, etc. It felt like perhaps it shouldn't have been important - at that point I knew he would LIVE, after all - but I still wanted to know if he'd have birthday cake and toys and friends. Give yourself a break, and a pat on the back, for doing all you can with the cards you were dealt.

10:16 AM  
Blogger abcmommy said...

WOW! It't like you read my mind at times when I was reading this post. My family is pushing for me & my husband to attend. In fact, they're watching our kids for a week so we can go alone and rest. Plus, throw in a free hotel stay and one flight and what do you get? Two parents that are still very reluctant to go! In fact, my husband can't committ to attend any sessions. He's only able to say that he'll be there for me when I return from them! I'm going to share your post with him because I think you captured what so many of us feel! Thank you for being so brave and putting into words what so many of us probably feel.
I hope to see you there!


9:17 PM  
Anonymous Anonymous said...

I'll wave to you from my corner :) I'm feeling the same way - totally afraid. I have this perfectly logical, well thought out picture of what Sean's life will be based on my understanding of WS. I'm so afraid that I've got it all wrong, and it will be a whole week of "coulda had a V8" moments (except it won't be funny).

But I'll be really sad if you're not there; I'm looking forward to meeting you. I've got no excuse for not coming; its practically in my backyard. So I'll be there, pretending like I'm totally fine with it and just excited to be there and learn so much, yada yada yada.


11:03 PM  
Blogger Aspen said...

I absolutely know how you feel. I have my one little buddy Sean who is a 22 year old with WS and I do love him dearly. However, I feel my heart shattering into a million pieces every time he spends an evening with us. I feel as though I have used the "no money" excuse for the past 2 years now. Simply because the minute I begin to think about actually braving it and going...I instantly break into a cold sweat. You will be awesome I know you will. You are so very strong.

3:01 PM  

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