Erik Quinn: The Heart of a Family: Hold the Cheese

Monday, August 25, 2008

Hold the Cheese

The doctor Erik saw recently called me this morning. She sounded two thousand years old on the phone, but she was very encouraging and assured me that his stool studies were completely normal. As for his symptoms, they continue but have improved. Every other morning I have to wash all of Erik's horrendously soiled bedding and pajamas. It may take another week or two to really determine if dairy is indeed the problem, but I was instructed to continue the strict discontinuation of dairy for now. The soy cheese has worked very well, although he tires of the milk. We'll try rice milk next. Erik is now successfully using the toilet sporadically, although it does not amuse him in the slightest and he usually refuses.

As for me, I continue to watch my friend with ALS suffer. He is slowly losing the function in his hand and will begin treatment with a BiPAP machine soon to assist with his breathing. He admitted today that he finds it more and more difficult to get out of bed in the morning. He coughs excessively throughout the day, finds it difficult to swallow food, and endures bouts of pain and spasms that are so intense I witness his skin turn lobster-red and his shirt soak up buckets of hot sweat. He is virtually unable to even talk through these episodes anymore. He puts on a very brave face, but things seem to be worsening every day. Last weekend as I flipped through the channels on television, I found a movie about Jenifer Estess, a woman who helped launch Project ALS with her sisters after being diagnosed with the disease. It was really difficult to watch, but I'm glad I did. She died in 2003 at the age of 40.

I took Erik to see his friend Samantha today. Shaena and I drove to the next town to take the kids to McDonald's for lunch. I ordered Erik a Happy Meal. He loves french fries and let me feed him torn pieces of an entire hamburger, although he had no part in putting any of it in his mouth himself. When we are out, I usually feed him by hand, as he freezes up around strange noises and other children. The french fries, however, were a different story.

After lunch in the play area, we took the kids to the gaping hole that houses the stairs to the Playland slide. Erik had no interest in entering this dark orifice, so after a brief comparison of the tunnel's size and the width of my buttocks, I sighed, took my tennis shoes off, and crawled up inside, encouraging him to follow. He wasn't buying it. I disappeared up the little spiral staircase, and he followed only because he was out of attractive options. We found ourselves at the top near a plastic tube that snaked out of sight down below. Thankfully, there were no other children using the equipment to complicate matters. Erik was anxious enough. I decided that I certainly wasn't going to cram myself back down the stairs and prayed that the grease trap in the restaurant wouldn't burst into flames while we knelt inside this gayly-colored death trap. I gently shoved a protesting Erik down the stairs, feeling like the most horrible mother in the world, and the tennis shoes capping his plastic orthotics made his horrific ride down the tube slower than molasses, prolonging his agony. Weighing several hundred times more than my son, my descent was much more rapid. I tried not to run him over and managed to gently shove him through the length of purple plastic tubing. The static from the friction against the slide raised my hair at the roots, and with everything being bathed in a purple glow, I felt as though I was moving through Grimace's lower intestine. Finally, we emerged. I was crazy enough to try it once again with Erik. He was even less amused this time. He looked at me, and his bottom lip quivered. His face reddened in alarm. He said, "Go home, Mama?" as he burst into tears. We were done. After I forced him to slide down one more time, we gathered our things, said goodbye to our friends, and drove home, enjoying the scenery and even driving through a farm supply store parking lot to admire the shiny, red tractors. I would consider the entire outing successful, although I wish simple things like play didn't feel like such a struggle. Or more therapy. I suppose every experience is therapy, no matter who you are, if you think about it.

I have attempted to utilize play areas and playgrounds with the help of my girlfriends more and more over time and have noticed Erik's general reaction is greatly improving. He still struggles with tripping, falling, and running into things and drops to his hands and knees to crawl over simple, unfamiliar surfaces that his brain doesn't define well while other kids zip past him without a second thought. The last time we loaded into the car after an hour on the playground, he told me he wanted to go back. That's a first for him. Now if only I could muster the same enthusiasm.

Instead, I still fight tears.

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Blogger Laura said...

Between both kids, I can't even tell you how many times I've been stuck in those horrible playthings trying to coax a terrified kid out. I would end up with bumps and briuses all over.

I'm so sorry to hear your friend is in so much pain and discomfort. We lost one of our 2 friends, who have ALS, this past weekend. It's very unfair and just really, really sucks.

4:48 AM  
Blogger Michelle said...

I'm sorry about your friend's struggle with ALS.

I, too, have been near tears at times watching Kayla trying to keep up with the other kids on the playground, I wish some things just weren't so hard for her!

12:33 PM  
Anonymous Anonymous said...

Gua said
Tonight Erik said to me, "Mama went down the slide." It wasn't said with a sense of awe or amusument, it was simply a statement, like "Best if used by September 2009." I don't know what he thought as you sprialed behind him, but it did make a lasting impression.


Love, Mom

9:24 PM  
Blogger Believer 1964 said...

Small steps of progress for sure, but I am enthusiastic about Erik asking to go back to the park. I hope that brought out a smile, even if it was snatched back by the idea you would have to go too! ;)

I read "Tales from the Bed: A Memoir" by Jenifer and Valerie Estess. It was an incredible story.

10:08 PM  
Blogger Tara said...

Oh, Nancy, I'm so sorry about your friend with ALS. I have dvr'd the movie 'Jenifer' - a friend of mine lost his father to ALS a couple of years ago and I really wanted to watch it but have been unable to so far.
And - your comment about going thru the intestines of Grimace had me rolling on the floor :) I love your analogies!!!

7:05 AM  
Blogger Jenny B said...

Louie drinks the VERY vanilla soymilk and amazingly enough can tell the difference between that and just regular vanilla soymilk. But he loves the very vanilla. They are so particular, aren't they?

9:14 PM  

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