Erik Quinn: The Heart of a Family: Diary of a Madwoman

Friday, April 20, 2007

Diary of a Madwoman



Random Thought of the Day: Is it just me, or does it seem like the string of random letters required for word verification to comment in Blogger gets longer every day? It feels like some sort of twisted sobriety/typing test.

I can't believe I'm up to over 200 posts now.

I have been conscious since about 2:30 a.m. and upright since about 4 a.m. I'm not complaining (much), however, because I slept without the use of Unisom now for many nights in a row. My work partner leaves town for a couple of days today, and I suspect that has a lot to do with my insomnia. I tried to cuddle with Gracie-Cat, but she insisted on putting her narrow buttocks in my face, which did not render me as relaxed as I had originally planned.

I don't promise much of importance to report today but wanted to let everybody know how much I appreciate your recent comments, phone calls, thoughts, and prayers. I received e-mails that have made me laugh until I hurt and touched my heart at the same time. You seem to know exactly how to make me smile. In addition, I always appreciate your comments here. I even received an e-mail from another WS mother in the next state who is even more geographically isolated than we are.

I hope you understand that this is the place I sometimes dump my deepest, darkest thoughts and that I do not ruminate 24-7 on Williams syndrome, although it is perpetually on my mind at some level. I experienced a real emotional crash lately, and I am doing the best I can to pull out of it. Thanks, Kim, for your last post. There are times I wonder how brilliant it is to be spilling my guts anywhere anymore and making myself so incredibly vulnerable, but because I have received such encouraging feedback, I continue to do so. Looking back at what I have written has been an incredible experience for me. I can see that I am doing better than I ever thought I would. So is Erik!

Erik is into everything these days. Being told "no" seems to wound him almost physically, yet he pushes his boundaries daily by getting into things he knows are off-limits and tortures himself with my reactions anyway. He is still in his crib (a.k.a. pediatric mosh pit), which is now falling apart from his nightly thrashing about. He refuses to eat the majority of my cooking and seems to live on peanut butter and jelly sandwiches, cottage cheese, fruit, crackers, and cheese. I can get him to eat peas occasionally, but he generally hates vegetables. He has eaten two containers of strawberries in about four days, and I bought a BUCKET full of an obscene amount of cottage cheese at the store because he plows through it in no time. He would live on just ice cream if I let him. He is now saying three words together on occasion, such as, "Here comes car," although this is still infrequent. He prefers to use two-word combinations most of the time. He pushes his dump truck down the driveway at light speed, and I am thankful we do not live closer to the road. He is still wearing orthotics, although I no longer require him to wear them for every waking hour. There are still days when he seems to understand nothing I say for hours at a time. Those days are difficult. He is physically active now, but the lights don't always seem to be on. Instead, he constantly echoes the last word that comes out of my mouth. However, the majority of the time he seems bright and alert. I think he understands more than he lets on and is sometimes simply too busy to provide me the constant reassurance I require from him at times.

I still feel painfully excluded when I hear other mothers talking about their children. Even if I successfully contribute to the conversation, I feel like I'm telling the lie of all lies and that I don't really count somehow as a normal mother. This is a very simplistic explanation of a very complex rush of emotions, of course. Yes, I am fully aware of how I should feel. However, knowing how one should feel doesn't automatically produce that feeling. I feel what I feel. As time goes on, there is the promise of more similarities between Erik and other children, so I hope this passes eventually. I am not going to hold my breath, though. I suspect I will always feel a little different and awkward. After all, awkward is one feeling I am quite familiar with, even before I had a child. It's hard when people are unaware of my son's syndrome because that future moment in time in which they find out hangs overhead like a heavy cloud, waiting to release gallons of raindrops on everyone in earshot. I detest the look I see in their eyes at that very moment, although I have yet to hear an unkind word. I end up feeling like a genuine killjoy/party pooper, and if I try to turn things around and be less emotional, I sound cold and un-Nancylike. As I have said before, I'm not comfortable telling others yet because I don't have a good script. I am confident that will come with time. For now, I remain uncomfortable either way but mostly when I "don't know if they know" or "know they don't know." Awkward. If things fail to change, perhaps I will just learn to care less. Just a thought. That has happened already to some degree.

So, life grinds on. I am looking forward to seeing my nephews in a week and watching Erik's face when they come through the door. He was quite happy to see them last October. There is much to look forward to in the next week, and I am savoring that feeling!

P.S. I'm all for starting a WS cult/commune.

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4 Comments:

Blogger Every minute counts.... said...

I have to say I have come to the place in my life where I just don't care what people think of me at times and then at others I am painfully reaching out for acceptance.It is a back and forth I am hoping will come to a balance soon. I used to go to the school playgroups with the "normal" kids...now I avoid them like the plague! I have found it much more comfortable with my peers as well as Abi's. The parents of other special needs children don't ever ask..."why does your 4 yr old still have a bottle?" they just accept you for who you are and how you have come to deal with what you have been dealt. To find a group like that is like finding a buried treasure. It has been a weight that has lifted off my shoulders.I truly hope that you can find that same comfort in person(not just through the computer)BUT...if you can't...I already have a pop-up camper and the family LOVES road trips!!!:) We've never been to the great Northwest!!! We could meet in the middle!!!

Noel

7:44 AM  
Anonymous Aspen said...

It still breaks my heart to know that Daven and I won't be walking through that door next week. I had so hoped to join you and your family in the walk and to celebrate Sophie and Erik along with so many other WS children. As we have said before, we will meet...we will.

I am happy that things are looking up. Family and good things in the near future are always an instant pick me up!

LOVE YOU LADY! Enjoy your weekend.

10:31 AM  
Blogger Lisa R said...

Awe man Nance I think you need a nap 2am...you should have called I was getting ready for work.
I know your blog is how you are 24-7 you do not have to pretend like it is not...LOL...Just kidding...A blog is like a journal say whatever you want you do not ever have to explain yourself...I mean really like Noel said if you were really haveing a daily pitty party or depressed you would be hanging in the closet with tissues and chocolate...I wish I lived closer...Like you I am waiting for another WS mom to drop out of the sky in my lap...Isn't there anyone in MD with a WS baby other then me!!!

10:57 AM  
Blogger THE PASLAY'S OF IDAHO said...

AHHHHHH... WELCOME TO MY WORLD! :) BRAYDEN COULD LIVE ON PEANUT BUTTER SANDWICHES AND CHOCOLATE MILK AND HE HAS INFORMED ME THAT ANYTHING THAT IS A GREEN VEGIE HE IS "NOW" ALLERGIC TOO. THEN BROGAN... HE WILL EAT ANYTHING WITH A "CRUNCH" HIS ALL TIME FAVORITE FOOD IS A POTATO CHIP AND THE HOTTER THE BETTER.... HE WAS INTRODUCED TO "HOT CHIPS" AS HE CALLS THEM ON OUR LAST VISIT SEEING YOU GUYS... THANKS UNCLE BRIAN! :) I AM SURE DURING OUR VISIT ERIK, BRAYDEN AND BROGAN WILL SWAP STORIES ABOUT ALL THE "GROSS" THINGS US MOMMIES TRY TO HAVE THEM EAT!!! :)

WHAT IS IT... FOOD AND THE POTTY.. THE TWO THINGS TODDLERS HAVE CONTROL OVER AND NOT US! :)

ONE WEEK IT WILL BE THIS AND ANOTHER WEEK IT WILL BE THAT! THIS WHOLE EATING THING AND CHANGING IT UP ON YOU IS TRULY TODDLER BEHAVIOR! :)

CAN YOU HEAR THAT? WE ARE CHEERING ABOUT ERIK WALKING DOWN THE STAIRS! THANKS FOR SHARING THAT WITH ME ON THE PHONE TODAY! I BET IT MADE YOUR EYES MISTY!! GOOOOOOOOO ERIK!

LOVE YOU AND BIG HUGS ALL AROUND!

1:25 PM  

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