Erik Quinn: The Heart of a Family: Brainstipation

Wednesday, February 13, 2008

Brainstipation



I took this photo of Erik eating breakfast in a real chair for the first time yesterday. Note the footie pajamas (Side Note: At what size do footie PJs become completely creepy?). I can't locate a suitable booster seat in this town to save my life and have resorted to using the phone book to jack him up a couple inches so he can at least visualize the contents of the bowl he eats from. His legs continue to lengthen. His toes tend to bore holes in the ends of his pajamas. I can hardly cram his swelling feet into his orthotics anymore. My baby is turning into an anemic-looking version of the Incredible Hulk. Since he isn't gaining much weight, he is still wearing size 2T pants, which fit around the waist perfectly but are completely inadequate lengthwise and tend to look a bit like tiny pairs of ladies' capris. There's a bright side to everything, though. He is ready to go wading in a nearby body of water at a moment's notice.

The last couple days have been better. Either I am adjusting to Erik's tantrum throwing or there are less of them. We are changing up our routines in the house a bit, and it seems to be calming him down in general. I just surprise him as much as possible. I called my mother yesterday and invited her to accompany us to the playground. The sky was the color of a robin's egg, and the temperature was springlike. I really wanted to do something special for Erik, but he ended up furious at me for interrupting his afternoon with such nonsense, and I ended up having to hold him down to get his coat on and get him to the car. I have learned to carry him mid tantrum to the Jeep in the garage at moments like these, strap him kicking and yelling into his seat, and offer him a piece of string cheese while I finish my last five minutes of getting my things together -- without a large boy hanging onto my leg who insists upon simultaneously assaulting me. Oh yes. I'm learning. By the time I get back out to the car, not only is the boy calm and ready to go, but he has consumed 25 percent of his daily recommended intake of calcium.

Each time we arrive at the playground, I suddenly remember why I don't normally go there. The parents can be incredibly rude. The kids cause Erik to freak out and cling to me, motionless, with his hands clapped tightly over his ears. We were able to convince him to climb up on the equipment a little bit, but he was really more interested in running through a crust of old snow over and over and plunging his hands into filthy puddles. Don't get me wrong -- I think he enjoyed himself, but it hardly seemed worth the trip (we have snow and mud puddles at home). There is always some degree of emotional hangover in me the next day as well. I thought that the playground would get easier, but it most definitely hasn't, especially with Erik's seemingly intensifying sensitivity to unfamiliar children and the noises they make. In fact, he appears more different than ever. I know that soon the other children and parents will likely ask me questions that will be difficult to answer, and I am putting that off as long as possible. For now, I love the special education bubble we live in, and it is hard for me to step outside of it anymore. That makes me smile in itself, as I was so uncomfortable with that world at the beginning of all of this. I don't ever want to leave the comfort of the bubble we live in, but that day is coming in less than two years.

For now, Erik and I are learning to fly.

Today Erik and I visited Barbara, my author-friend. The visit went well, but I don't feel like writing about it. It's strange telling someone I have only seen twice in my life my most personal thoughts. I drove away feeling like I had an open wound and needed to sit for a while to collect myself. Her baby girl had encephalitis 46 years ago, and it severely damaged her brain. It's very difficult to discover this woman still hurts. She does a beautiful job of covering it and directing her attention elsewhere, singing and creating works of art in her spare time. She is one of the strongest people I have ever met and lives life with gusto. However, the fact that I can see the choppy surface of that reservoir of pain in her just a millimeter under her smile terrifies me. It tells me that there's no going back to not hurting. Even half a century won't dry it up.

I'm feeling pretty numb right now just dealing with what's in front of me at any given moment and, on top of everything, have developed a horrible case of writer's block. That likely means I am doing well in general. We were able to attend church Sunday without any problems whatsoever, and Erik's caregivers made it very clear that he will quickly make himself very well known there. They enjoyed taking care of him, and a new staff member in the nursery actually requested time with Erik and expressed the genuine desire to get to know him. We have gone from receiving eye rolling and feeling as if we were being swept under the rug to feeling like we have celebrity status. In addition, we are gearing up for Sophie's Run 2008 in April (the 26th) and hope to share registration information with our friends and family soon.

For now, I am signing off for a while. I hate to take a predetermined amount of time off in case I feel like writing before then, but let's try a week. I'm still considering pulling the plug on this old blog at the two-year mark, but I'll wait until I get to that point and see if I still have things to say.

Besides, how can you miss me if I never go away?

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19 Comments:

Blogger Julie said...

I always miss you when you go away. Glad church went better. Have a nice little vacation away from us.:)

6:26 PM  
Blogger kathi said...

Thinking of you going away, for any length of time, is sad for me. But I'm selfish like that. I love coming here. But, do what you need to do, girl. Love you much and want the best for you.

Thanks for sharing the pic with us, so sweet. And I'm so glad church went well. Reminds me of the lady I heard about on the news this week that told the woman who turned around ang gave her crying child an aggrivated look on an airplane, "yeah, like rolling your eyes at a crying child ever made it stop crying".

7:36 PM  
Blogger Lizard Eater said...

Miss you already. ;) Have a good mental break ... wait, that sounded like--that's not what I meant--oh, oof. I think I need a vacation.

7:48 PM  
Blogger Katie said...

My dear Nancy,
I too had a moment of reckoning once upon a time where my dispair at my tantruming son had me in tears and then i decided. bugger it. Turned off my emotions strapped him kicking and screaming to the carseat gave him a snack and went inside to retrieve my things with a clear head. Does wonders for time management.
By the way, i wont mind u pulling the plug on this blog as long as you begin a new blog for the next chapter of your life.
luv ya!

10:34 PM  
Blogger Amy said...

Don't go Nancy!!! Erik is getting very big, wow. Have you tried pants at Old Navy? They have adjustable elastic waist bands. I do have to adjust the elastic ALOT but it helps with the length and Avery always looks fashionable in her baggy bootcuts.
xoxo
Amy

6:09 AM  
Blogger Heather said...

I'm gonna try this again, my first comment failed in the mailing department somewhere. If this comes through twice, delete one please! What I said was something like,,,, I understand you needing a break. The 'truthiness' of our situation is hard to put into words, and I can see how that would be tireing and stressful after awhile, But....I have been Caleb's Mom for 10 yrs, and I have learned a few things. One of them being that you can'not underestimate the power of Kinship. We have found support, love, and friendship through this blogging experience. I am so glad that when I need someone who really understands WS...I have you guys. I love reading about Erik.. plain and simple, even if its just a sentence or two, and maybe a picture here and there. I am glad to be able to try and help you understand your son a little better, and be a cyber shoulder for you to lean on. I know I am a pretty strong person, but I also accept the fact that I will always need support from people who KNOW WS. You do what is in your heart... and if that means no more blogging than so be it. Just remember, we are here when you need us, if you need us. Very cute picture, He looks really proud!
Glad Church went better this time:)
Happy Valentines Day! Love, Heather

7:07 AM  
Anonymous John Andrew Frye said...

I'll be thinking of you and Erik, Nance. I'll miss your updates, but I know you'll be fine!

9:20 AM  
Anonymous joshua's mum said...

My girls again thought this was a photo of Joshua (or his twin who happens to live on the other side of the world!) We had the same problems finding the right seating for Joshua but finally came across the stokke chair it's swedish design and can last from infant to adult.It is very adjustable and grows with the child it also has a lap belt so they can't jump down.I'm sure they have a website. We got ours 2nd hand on ebay I am sure they would have them in America.

I too love your blogs but strongly encourgage you to do what you got to do. I just wait for the book in the meantime.

lots of love Anne ( Joshua mum )

1:32 PM  
Blogger Every minute counts.... said...

Agree with Katie you only get to leave this one to open up another one...we would miss you too much! Besides, we would miss seeing Erik's smiling face. :)

Glad things are a little more managable. Oh, I would have to say that over the age of 9 footy pj's get kinda weird for a boy anyway...I kinda like the idea at least my toes would be warm!

Noel

1:44 PM  
Blogger Teresa & Shawn said...

Oh my goodness he looks so tall sitting there!!

I understand about needing to take time away from the blog. Sometimes you just need to be "normal." I know I need to step back when I find myself composing posts in my head at bedtime.

4:57 PM  
Blogger Laura said...

I love the picture. He's such a doll!
I'm glad the church arrangments worked out for you all.
Enjoy your break!

2:31 AM  
Blogger Tara said...

Man, Nancy, I always miss you when you're gone. Your writing is unbelievable and I feel like I'm living the whole story right with you. And - you express things so much better than me.
I love the picture of Erik. I can tell he is getting so tall!! Such a doll!

12:11 PM  
Anonymous AUNITE DEE-TA said...

IF YOU DO PULL THE PLUG ON YOUR BLOG... I WILL BE CALLING YOU EVEN MORE... I THOUGHT THAT MIGHT GET YOU RE-THINKING! LOL!!! SERIOUSLY THOUGH... I WILL NEED SOME WITHDRAWAL TIME... NONE OF THIS, YOU JUST GET UP AND TOTALLY QUITE!! ALRIGHT???

I LOVE YOU GIRL AND I AM ALWAYS IN YOUR CORNER! WHATEVER WORKS FOR YOU...

IF YOU DO QUITE... I WILL BE TRUSTING THAT YOU ARE WORKING ON THAT BOOK OR COOKBOOK OR SOME STAND UP COMEDY ROUTINE...

LOVE LOVE LOVE THE PHOTO OF ERIK! HE JUST CRACKS ME UP WITH THAT SMILE! HE IS JUST SO PRECIOUS!!! AND THE SEAT SITUATION, GOOD LUCK! I HAD A TERRIBLE TIME FINDING SOMETHING THAT FIT OUR CHAIRS, NOOOO WAIT, I NEVER DID FIND SOMETHING THAT FITTED OUR CHAIRS! I THINK THE PHONE BOOK IS A GREAT IDEA!!! MY MOM TOOK A PHONE BOOK WHEN WE WERE KIDS AND WRAPPED IT UP IN SOME SORT OF INDUSTRIAL TAPE TO KEEP IT IN ITS ORIGINAL FORM AND THEN WRAPPED A CUTE PILLOW CASE OVER IT TO MAKE IT LOOK NICE! :) NOW HOW COME I DIDN'T THINK OF THIS EARLIER FOR ME???? HA!

COUNT ON US GOING TO SOPHIE'S RUN!! WHAT A DAY TO NOT MISS!!!!!

LOVE YOU OODLES AND BIG HUGS!!!!

2:51 PM  
Blogger Michelle said...

I have the opposite problem with pants for Kayla - if they fit around her waist they are usually too long in length LOL

Glad to hear that church worked out so much better this last Sun! I hope that continues!

I hope you don't decide to pull the plug for good on blogging, I really enjoy reading your posts, but I can understand the need to take some time away. Enjoy your break!

3:24 PM  
Blogger TrappedInColorado said...

More people will miss you than you think, my sweet.

I read you everyday, but do not always comment. You subject is difficult but your style is quite good.

Come back to us, lady with the big heart and good soul.

1:35 AM  
Blogger LZ Blogger said...

Nancy ~ The thought of not hearing your words for a while, is NOT exactly music to my ears. You are such a good writer and you speak from your heart and soul. You don't have to leave for me to miss you! Just the thought of it frankly leaves me COLD! But you have to do what is right for you and NOT your FANS!

By the way... I wish I could find pj's like Erik's in MY SIZE (especially this winter). I am so happy that they are treating you guys so well at church too! ~ jb///

7:37 PM  
Blogger camille said...

i'll be sad if you leave. i love reading your posts and in a way i feel like you are blazing a trail for me, being just about a year ahead of us.
fortunately if you do take a hiatus, we still have email! wahoo, yahoo (dot com!!)

7:38 PM  
Blogger Leesa said...

Nancy,

I rarely comment on your blog, but I read it. Not having children myself, I find it hard to say anything meaningful.

You write beautifully, and your blog has really taught me a lot. Whether you pull the plug or not, good luck to you and your family. You are a brave woman.

7:47 PM  
Blogger Lisa R said...

Adorable!!!!!!!!!!! I can not wait to meet Erik I would just laugh my head off hearing him chat in the store what a character!!! Love ya

7:55 PM  

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