Erik Quinn: The Heart of a Family: Girl in the Bubble

Thursday, May 22, 2008

Girl in the Bubble

I'm feeling discouraged this week about life in general. When I take a step back and look at everything, it doesn't appear horrible at all. I realize I don't have much to complain about. If only I could shake this feeling of gloom and doom. Yeah, my back hurts, but it's better, and my son certainly isn't in a wheelchair, so I don't have to lift him much. In fact, not being able to lift him as much is forcing me to get on his case to do things himself. I have to nag him constantly, but it's working here and there. I'm just sick to death of my own voice.

School ends soon, and I will have the summer with Erik. I feel a little sick to my stomach about this because I probably need to schedule some activities for him to do. Just the thought of that makes me exhausted and depressed. He's not ready for a formal program through parks and recreation yet, and I'm not up for that, anyway. I really don't want to haul him to a place that should be fun kicking and screaming like he does sometimes when we go to school. He just seems to hate being around other children. What am I supposed to do, then? When we do things with my friends' kids, I get depressed because he still shuts down. At least his tears are few these days. I laugh his quirks off and make light of things, but I feel absolutely rotten inside and then guilty for feeling rotten. He has never gone off to play with a child voluntarily. Other kids tend to run him over, and he definitely doesn't like the noises they make. All he wants to do is push his stroller all over the property for hours at a time. Alone. That's his dream day. I purchased a couple of sprinkler-type toys for him, and we will try those soon. They look like fun, but Erik isn't always on the same page as I am. In all fairness, not many people are.

Somebody told me recently that I don't have to worry because Erik is definitely not mentally retarded. I guess our geneticist was wrong. She also stated the fact that he is cute and looks "normal" will hide any disability that he has and make things easier. In other words, he doesn't look very retarded. While I appreciate where she was going with all of that, it has taken me years to accept the profound effects of WS on my son's body and brain, and I could care less about hiding anything. I suspect it's progressively apparent to strangers that something is different about him. I take him in to pick up work, and I'm sure they are beginning to figure it out. I'm really okay with that. Most people love his strange, loving ways, although they don't know the reason he is different. The only reason I steer clear of the topic around people who don't know is that I lack the energy or experience to provide a sufficient explanation. Sometimes I think a few people who know are more comfortable pushing things under the rug and making it go away. That doesn't help me much because I can't make it go away. I heard it before at the beginning of all of this, and it comforts me greatly now: He is who he is. I finally get it.

I just smile and keep my mouth shut a lot.

The fear of being trapped here at home still haunts me. I have several favorite mindless activities I do on a regular basis. However, no matter what I do, I feel like I am alone inside a thick-walled bubble. I'm less sad these days and more angry. I'm not sure where the anger comes from. It's a nebulous cloud of emotion that seems to have no set target. It doesn't rise to the surface much anymore, but when it does, it emerges like a spray of heavy, seething molten lava. It surprises me every time. I think, wow, I really am pretty pissed off. I don't really know why.

Worst of all, sometimes I still feel Erik and I are invisible, rising up in this giant bubble, caught by a swift breeze. We float silently over playgrounds, schools, and birthday parties, helplessly watching it all drift by below us. The sunlight makes the filmy walls imprisoning us sparkle brilliantly.

Nobody looks up, and we drift away unnoticed.

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Blogger Amy said...

Hmmmm, I think you should install an underground pool this summer for you two and you can be the girl in the bubble floating in the pool.

10:53 AM  
Anonymous Auntie Dee-ta said...

I do know one thing... it won't be summer unless Erik comes for a visit! Erik loves it here and does great!!! Erik loved having the boys take him by the hand and show him what they are or about to do. By the time it was time for him to go back home Erik would actually follow them around and see what it is that they are doing and a few times he would join them all on his own just like one of the boys! I know that I can't just pull out my magic wand, "since I seem to have misplaced it" but just know that we are here and if we can make this summer a little bit better for you all just let us know!!!

How we love you all and how we so love being Erik's auntie and uncle and the boys just adore their cousin!


1:20 PM  
Blogger Every minute counts.... said...

Reading your post puts into words how I have been feeling. A little unnerved by being home with "nothing " to do. The thought of all the structure that is needed with is so overwhelming. I am a fly by the seat of my pants kind of person...Abi, Not so much! The older she gets the more set in her ways she seems and the more overwhelmed I get. :)

2:30 PM  
Blogger Julie said...

Have you checked into what is offered in your area as far as activities with other kids. I just ask because I am finding more and more that is going to be available to us here as Noah gets older. You know I have been tired lately of feeling like I have to "explain" Noah. Why he is delayed and so small. I thought the other day I would love to take him on Oprah or some other well publicized show that everyone would see. Maybe I would never have to tell anyone again. They would see us on there and already know.:)

6:02 PM  
Blogger Kerry said...

I understand the "anger" part - I am sometimes angry that I should be able to put my 2-1/2 year old down to play, that he can amuse himself so I don't have to be his 100% play toy. I feel like we should be able to do more, be more... but nope, we are still in baby mode.

About "retarded" - I think people around me need to redefine the word "retarded" because I also get, "I don't think of Brady as retarded" when they use that word as slang.

8:13 PM  
Anonymous tammy said...

I must admit I have many days as you do. In Nov.2007 I found Easter Seals not too far from me. They have made a hugh difference in Parkers life and mine. They have wonderful supports and groups.
Do you have access to any of these type of groups? I feel like they are part of my family now. Hang in there.

10:19 AM  
Blogger Penny said...

Wow, took the words right out of my mouth. I soooo feel the same emotions right now. Hang in there

6:37 PM  
Blogger Jennifer said...

I feel exactly the same way about my son. So many things I want to involve him in, but I can't. He wants to play baseball and other team sports yet can't understand why he can't join. It's frustrating. I wish I had some words of encouragement for you.

10:18 AM  

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