Erik Quinn: The Heart of a Family: Vent

Thursday, August 07, 2008


Life ain't always beautiful
Tears will fall sometimes
Life ain't always beautiful
But it's a beautiful ride

-- Gary Allan, "Life Ain't Always Beautiful"

Erik and I are having a rough week. Erik's favorite thing to do these days is to slap me repeatedly and yell no. He did both without warning after I made him a sandwich and presented it to him for lunch this afternoon. I concluded that he wanted peanut butter instead of cheese and just didn't have the words to express his disgust. I'm looking forward to the beginning of school when we have a full schedule. I have support group tonight, but I don't feel like talking about anything Erik-related today. I found myself here instead, and so I type, surprised that there are actually words coming from my fingers.

When Erik was a baby, I remember absolutely nothing about being a mother coming naturally to me like I was led to believe it would. I remember holding my limp, horribly skinny little baby on my lap and gripping onto his wonderful, wide feet, pumping them up and down while I asked my own mother, "What am I supposed to do with him? Am I doing this right?" She said that she thought that I was, but I always suspected I wasn't doing the little things correctly. He didn't give me the feedback other babies seemed to give their mothers. Maybe that's why I never wanted another child. I simply can't stomach the rejection again. I just attended my 20th high school reunion, and a few of my old classmates asked me if I was going to have another baby. There were three pregnant women there. I automatically told them how fabulous my life was and that it wasn't on the agenda. Nobody needs to know what's really happening in my head or how messed up that topic is for me.

Some things have changed since I had a newborn, but some things have stayed very much the same. My husband called me from work today to chat, and I admitted I still have no idea how to play with our kid. He is not thrilled with toys, doesn't understand the concept of playing a simple game made for peers his age, and would rather destroy things around the house most of the time than do a structured activity. We still have locks on our toilets and toilet tissue for this reason. While Erik is sticking his head in the toilet giving himself swirlies and spinning glorious, pale loops of toilet tissue into the air, his friends are learning to use these items correctly and have moved on. It just kills me. A friend showed me how to lock my computer so I didn't have to turn everything off, and Erik spent the morning at my desk pounding on the keyboard, despite my strict warnings not to. He had a borderline violent physical reaction each time I told him no and took him to his room but continued to do it, anyway.

What do I do with him instead? You tell me. I can't take him to a McDonald's to get coffee and let him play because he clings to me and hates every second of it. Sometimes he'll even beg me to go home. I can't take him to the playground because he gets run over by the other children, and I die inside after watching the other families, although lately I have been forcing myself to go for his sake. He is beginning to enjoy making his own fun. He sometimes plays with the filthy bark chips and is developing what may be an obsession with the park sprinklers but rarely wants to use the equipment made for children unless there is something to spin attached to it. We inevitably end up alone in the corner of a park, trapped in his own world. He now enthusiastically greets the families riding by on their bikes, and most of the other children ignore him or look at him like he is a freak after he says random things to them or shouts hello 50 times in a row. I no longer care how other parents looking at us, but the other children still kill me. Our outings to get groceries are almost history. He almost doesn't fit into a shopping cart anymore, especially with his plastic orthotics on, and I am unable to control him in the store without him being strapped down. He reaches out to grab everyone who passes by and will not let go of them, which can be quite frightening/embarrassing. And don't even ask me about how toilet training has gone. He will be FOUR soon, and I'm still changing diapers with no end in sight, being kicked in the chest while I try to care for him. Maybe we'll go to the library again soon. That went well last time.

I know that once his IEP rolls around, I can ask for help again. One more month.

His birthday is in October, and he will be visiting the cardiologist. At the convention I learned that ALL people with WS have what is called "elastin arteriopathy." That's a type of general arterial disease. We just need to know if this currently affects his health or not. No biggie, right? In addition, we have to sedate Erik to keep him still during the echocardiogram. Our attempts at unsedated echoes in the past have failed miserably and ended up requiring an additional appointment. Sedation in itself is risky, too. In one afternoon, the procedure itself or the results of the procedure could alter our lives forever. While I know things will likely turn out just fine, I just detest waiting.

So here I sit, trapped at home. Lonely but wanting to be left completely alone.

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Blogger Julie said...

I totally understand. We are getting to the point where 20 HI's are annoying and you can see it on peoples faces. I am lucky he is tiny so I should be able to fit him in a cart for sometime. He acts like a maniac running, and clearing shelves. Yes, he to tries to grab people. We have to shut the bathroom door for all the same reasons. The other day he crawled in the dryer. On one hand it scares me to hear that there is a huge possibility that he won't outgrow these things any time soon, but on the other hand I am glad I am not alone. Thinking of you.

5:35 PM  
Anonymous Auntie Dee~ta said...

Now I know why you did not answer your phone today! I love you girl and am praying for you... how I wish that we lived closer, I would kidnap you or perhaps Erik and let you have a day to grocery shop or sit on your wonderful porch with a drink in one hand a good book in the other! We could take Erik to McDonald's, for some reason he does okay there with us... I know the reason, he has two BIG cousins that stand right by his side and I mean right by his side! Consider yourself hugged and maybe the boys and I need to come for a visit,"before the grand party" or perhaps Erik needs some time here with us before the summer ends???

Brad just said wouldn't it be great if we lived in your area one day! I about cried! To live near family and friends in one wonderful state, to be HOME would be a gift! We could help with Erik!!!!! Or you and I could do some shoe shoppin therapy!!!!

BIG HUGS and know that I love ya and am always-always here for you and for Erik!


Love the song and you vent all you want, I love your honesty and if you go tonight to group I truly hope it helps in some way!

5:47 PM  
Blogger abcmommy said...

I attended the convention, and I truly wish that I could have met you in person. Reading your various entries reminds me so much of my own experiences at the convention. I'm truly amazed at how well you articulate and capture these experiences for everyone. You are truly gifted with an amazing ability to write, and find humor in the most aggravating or heartwrenching moments in life. You're truly blessed with this ability to reflect and share of yourself, and as a result, you've helped me and so many others get through days that are lonely, frustrating, and right down scary. Thank you!

8:00 PM  
Blogger Penny said...

Oh, I wish I had words of wisdom for you, but unfortunately, this week I feel like your emotional twin. Keith will be 5 on the 25th of this month and there is no end in sight for our Potty training either. I am so bruised this week, I look as though I have beentaken out and beaten and left for dead.

I can only say that I know how you feel and if you ever need to talk.....I am here

8:27 PM  
Blogger Tara said...

You're words of feeling rejected by your son hit home for me. I felt that way for so long with Payton, not understanding what in the world I'd done wrong. Bob and I were so unsure of whether we wanted to have another child and then when we had Koen I realized that what I had experienced with Payton was so not normal. Even though I have Koen and know that babies will typically have such a bond with their mothers, I will never forget the feeling of rejection I felt with Payton. My heart has been forever broken by that feeling.
I feel for you on the hitting/, trouble at the grocery store, etc. I'm still so shocked how often I hear what a wonderful syndrome this is (ok-whatever that means) - the behavior issues are overbearing and exhausting.
Again-thank you for your posts.

8:34 PM  
Blogger jbgrinch said...

You and all the WS families are so Brave(no that is not the right word but I just dont know what is)to put this out there. It is a far cry from what I deal with but I understand the rejection part every time my daughter says I hate you. or I dont love you. I thought this would pass but at 7 it is still going strong

7:50 AM  

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