Erik Quinn: The Heart of a Family: Spooning

Monday, November 20, 2006

Spooning



In hindsight, I should have known that Erik's cuddling last week was a giant red flag. He slept off and on all day Saturday after developing a fever of 102.5 but no other real symptoms. On Sunday he was less feverish but still not quite as delightfully Erik-y as he usually is. Brian and I took the opportunity to enjoy being able to hold him once we had his fever under control. Erik is usually much too busy for that kind of thing. By Sunday night, we felt he was well enough to briefly attend a party with folks from Brian's work. He loved every minute of it, especially when he saw there were dogs and a giant exercise ball there. He hung onto strangers and did the smile/quint face I still need to find a name for. The ladies loved him. I ended up in a comfortable corner watching plates of steaming hors d'oeuvres come out of the kitchen after taking a quick tour of the house with the hostess. I found myself chatting with a woman whom I previously met once or twice before. She became pregnant and had a baby a few months after I did. Frankly, comparing kid stories with other parents makes me uncomfortable a lot of the time. I find myself putting on a cheerful facade and hear a voice that doesn't sound like my own asking automatic questions about their kid I don't really want to hear the answers to but feel obligated to ask. It's hard to relax during this exchange. Her 17-month-old daughter weighs 27 pounds and seemed to be in constant motion. She said, "I noticed that Erik has leg braces on." I had dressed Erik in his best jeans, which cover up his braces for the most part, but they are still visible, especially when we pick him up and hold him. His pants ride up, making his legs look a lot like those of a Star Wars stormtrooper from the back (we hum the stormtrooper theme sometimes). Before I knew it, I had launched into a quick lecture about Williams. It was the first time I really did that without thinking. Unfortunately, because I haven't had much opportunity to practice what to say, I had some difficulty putting my thoughts into words, although I am almost certain she couldn't tell. She responded quite appropriately and asked questions without overreacting, blowing it off as nothing, or seeming to feel sorry for our family. Because I was trying to be brief, I sounded too blunt and probably colder than I intended. I could have said that his heel cords needed to be stretched out and left it at that, but I truly wanted someone at Brian's workplace to understand what he has been going through over the past couple of years. He is quiet about it, and only a couple of people know what he has endured. Looking back, there were some things that I wish I had worded differently. I sucked all of the emotion out of the words I chose in order to get through it. It probably sounds strange, but I would really like to sit down and think about some sort of short script to carry in my mind that I can follow until I'm more comfortable. I imagine things will go a little more smoothly next time. I do feel good about giving it the old college try and making it through it. I'm obviously ready to talk about it outside of my blog here and there with people outside our regular social circle when it is appropriate or questions are asked. It felt good to talk it with Brian on the way home, and he was very supportive.

It's hard seeing typical kids at what should be happy gatherings for us. It still REALLY bothers me, and I feel last night has thrown me into a little bit of a funk today. There are no tears to cry today, but I just feel like being alone. Most of the time I don't know I'm bothered by something WS-related until the next day, like a time release slap in the face that stings for a day or two afterwards.

Because I have been thinking about the one-year anniversary of our diagnosis coming in the next few months, I went to my file cabinet today and retrieved a copy of the e-mail I sent to most of my friends and family the day after we traveled to see the geneticist. I thought I was ready to handle it, but it ended up making me feel really lousy, so it is back in the file cabinet for now. It remains a very detailed record of the worst day of my entire life. Quite truthfully, I wasn't sure if I kept it and was searching for it out of curiosity.

Tomorrow will be brighter.

8 Comments:

Blogger Kerry said...

I know what you mean - I sometimes get tongue-tied trying to explain about Brady but sometimes I realize later I misspoke or didn't quite detail it right. When you have that script let me know :)

I hope Erik is better today. Sometimes it's nice when they just want to lay with you and be cozy.
Love - K

6:07 PM  
Blogger PASLAY'S FROM IDAHO said...

I BET YOU SPOKE JUST PERFECT AT THIS PARTY GIRL! NO... I KNOW YOU DID! BUT, WHATEVER SCRIPT YOU COME UP WITH WILL SO ROCK! :) I AM PROUD OF YOU THAT YOU SHARED... IT IS GOOD FOR OTHERS TO LEARN A THING OR TWO ABOUT WS AND JUST TO GET TO KNOW THE LIFE OF THIS WONDERFUL LITTLE BOY NAMED ERIK QUINN! :)

BIG HUGS ALL AROUND!!!

7:07 PM  
Blogger Amy K said...

It will never be easy, but education is important. But you know what else is important, feeling normal as a mom and it is ok to breeze over things and just say, he has tight heel cords and low muscle tone, skip the WS. As I said, Williams syndrome is everything and it is nothing. Today I feel like it is nothing, and said a pray this morning thanking my higher power for watching over us and blessing us in so many ways. I love you!
Amy

7:00 AM  
Blogger Aspen said...

Yes we will be faced with this sort of conversation for many years to come. I too find it hard to describe without getting too emotional or too cold. It is a fine line. I love you to death and will be thinking about you so much over the next few days. (I think about you on a regular basis anyway.)

Give Erik plenty of kisses from us. And snuggle with him as long as he lets you.

LOVE LOVE LOVE

7:33 AM  
Blogger Lizard Eater said...

A short script ... yeah, I need to do that, too. There's just no graceful way to say, "...she had cancer." And I'm tired of seeing the striken faces and having to reassure the person I'm speaking to.

Usually, it'll be because someone asks how old Little Warrior is, then they respond to that with how small she is, then there I am saying, yes, she's small because she had cancer ...

I like the idea of a script. And I completely relate about it being "too soon" to re-read things. I have a pic of LW from when the tumors were still in here. I looked at it recently ... eeee. Too soon.

1:51 PM  
Anonymous Anonymous said...

you could call his smile/squint a smint, maybe?

4:53 PM  
Blogger Kati said...

I know this too cold and blunt ws-education. Although I had to do this only a few times for my best friends and the family, I felt that I bagatellized the whole ws-thing, maybe 1. I didn't want to cry in front of them 2. I didn't want them to regret .... and I realized that after I said one word after the other, the whole thing didn't sound too serious... Unfortunately I know what I know, but if it isn't necessary I won't share ws-info with others I think :)
I hope Erik got well, the sleeping pic made me smile, he is so sweet while sleeping, I love his legs under him :)
Maybe today it better for you that yesterday, big hugs to you!!!!
Love, Kati

4:01 AM  
Blogger Nancy said...

A "smint?" That's PERFECT! Yay!

:)

7:48 AM  

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