Erik Quinn: The Heart of a Family: Yummy Sounds

Friday, April 04, 2008

Yummy Sounds

You just made a yummy sound, so I thought you liked the dessert.

-- Gene Wilder as Frederick Frankenstein (Young Frankenstein)

Yesterday went so well I thought I was on some sort of hidden camera show. I felt as if Ashton Kutcher and his gang would emerge from behind my living room furniture, point, and laugh maniacally. I looked over my shoulder all day.

Erik was a complete angel until he got tired around dinnertime. He watched me work out in the morning, and afterwards I kissed him on the forehead and thanked him for being so patient. I tuned the television to Sesame Street (I time my workouts around Elmo) and took a long, hot shower. After Erik's show, I loaded up my iPod, put on my sunglasses, and invited Erik to join me outside, where the temperature was actually above the 20-degree mark for once. He ran around my chair on the front walk while I dried my hair in the sun. I let him do his thing, for the most part, which mostly involves piloting his stroller around our property, tipping the stroller over to spin the wheels, and righting it again. He did straddle his tricycle from time to time and pushed himself around Fred Flintstone style with his feet. I finally asked him to put his feet on the pedals, something we have been working on, and he did. I straightened his shoes out on the pedals and told him to push with his legs. Slowly but surely, he propelled himself forward and then backwards for two revolutions of the pedals. He seems so clumsy, but his feet obeyed him for a brief moment this way. I clapped, cheered, and jumped up and down like a dreadful Dallas Cowboy Cheerleader reject, thankful we live far enough apart from our neighbors that they need binoculars to see the details of what transpires here. If they are using binoculars and are offended by any of the goings on here, I figure that would be their own darned fault.

When it was time to go inside, Erik did. No fit. No fuss. No physical or verbal abuse. I fixed him an early lunch, and he consumed it with vigor. He even made the disturbing yummy sounds I love so much. My partner called me and asked me to pick up work from the medical clinic, and I suggested to Erik that we take an extra trip to the store on the way to buy ingredients for Rice Krispie treats. He came to the garage door when I asked him to, saving my aging back from having to carry him like usual, and we drove out into the sunshine.

We hit the store first, where Erik charmed everyone and informed shoppers that we were on an adventure. When we arrived next at the clinic, a very handsome young thing stood sentry at the door wearing a Bluetooth headset. He turned to me and explained the fire alarm would be sounding in approximately ten seconds but that it was just a drill. My face fell like a bad souffle, and I turned Erik around almost violently. We exited the building as if we had been told that the reception desk was actually engulfed in flames. As we jogged out, I quickly thanked the man and explained my son has sensitive hearing. He followed me outside, introduced himself, and made small talk as the screeching sound began inside. When it ceased, I thanked him again and Erik said goodbye. Looking back on the way I reacted, I had to laugh. I'm sure to a complete stranger I must look like complete freak show! To think I actually used to care.

In the afternoon I prepared myself to attend my new support group. When Brian arrived home, he was a little surprised I decided to go. I drove to the hospital and found a vacant parking spot in front of the building, which was a complete miracle. The sun was setting, and the building cast an ominous shadow over me as I walked to enter the ridiculous revolving door that makes me feel like a hamster. I admit I spent five extra minutes in the bathroom in the hallway before ascending the stairs in the lobby to the cafeteria. I fussed with my hair. I put on lipstick. I tried to send a text message but was required to walk back outside past the emergency room to get reception to send it off.

When I reached the cafeteria, I saw the friend who had invited me to attend. She was holding a red tray holding a gigantic salad topped with sunflower seeds and those tiny corn cobs on it. I grabbed a coffee mug and filled it with decaf. I watched her pay for her salad, and we walked around the corner into the dining room, where two round tables were pushed together and some women sat around them in one corner. One of the women was in the middle of telling her very intense story about her son being diagnosed with a progressive genetic disorder a mere two weeks ago. I quietly sat down in an empty chair and joined the group. They paused for a moment to check me out before she continued. Another mother joined us and gently parked a wheelchair containing her 7-year-old daughter next to me. The little girl was dressed from head to toe in a cheerful shade of pink but appeared sullen and tired. She slumped to one side, and her mother inserted a pacifier in her mouth. Her sister quietly played on the other side of their mother at the table.

We all had a chance to tell our stories. The reasons we sat around the table varied. Cerebral palsy. Hurler syndrome. Phelan-McDermid. I fidgeted in my chair, and when it was my turn, I reopened the wound of the day of our diagnosis. Instead of pity, I received clucks of sympathy and nods of total understanding. My numbness of late kept me fully anesthetized throughout it all. I passed a photo of Erik around the table. I told the story of him wrapping his hands around my neck yesterday and trying to squeeze. To my surprise, everyone laughed. Including me. I tell a good story, apparently, and another mother explained her daughter was a complete angel unless they were alone, when she was also assaulted. Another mother reported that her arm was sore from comforting her constantly sobbing, low sensory daughter by gently but firmly striking her child's back with her forearm for an entire hour during the night until she stopped crying and fell asleep, lulled by the strange sensation other children would likely find disturbing. When she pulled her own sleeve up after telling the story, there was a small, red bruise there. We all gasped, and she turned red with embarrassment as we began to laugh again. These women are sleep-deprived saints. Warriors. The best mothers ever.

At several times during the meeting, one woman stopped to ask if I had been on any sitcoms and told me mid giggle that she had not laughed much over the past week. I was halfway horrified, as I am aware I have a tendency to make jokes constantly when I'm nervous, unable to control the impulses in my brain. I sheepishly apologized for my dark sense of humor, and she said there was no need. Her daughter is being fitted with a feeding tube in the next couple of weeks, and I could see a hint of fear in her eyes.

When the meeting was over, three of the women asked if I had to go home right away. Surprised, I told them no, and they asked me what I liked to do. After we all fantasized about going our separate ways home to the comfort of our beds and the company of the books we were reading, we all headed for the nearest Starbucks, where we made ourselves comfortable until we were kicked out at closing time. I bought a doll-sized bottle of Italian sparkling water.

When we parted ways, I felt great. Every single word from my mouth was understood at some level by someone there. Because of Erik's diagnosis, I can't afford to be shy anymore and felt more confident than I ever would be in a room with strangers. I learned about money waiting for us in the community to fund special classes through parks and recreation and how these funds were in danger of getting used for other things because parents like us are unaware of them and simply don't know to show up. How there are people and services itching for us to ask for help. How networking can change a community. How I can attempt to comfort someone who is grieving. How maybe I am good for something after all.

Most importantly, I know I no longer have to sit at home isolated from the world on days I am sad and can't find the strength to immerse myself in groups of typical parents and their children because being at home is simply easier on my heart and brain.

How I can seek out these mothers' company and just BE.

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Blogger camille said...

Wow Nancy, that is so encouraging. I loved reading that post. Very inspiring. I really want to find a support group like that too.

7:46 AM  
Blogger Amy said...

Thank you, I sure do have much to learn from you.

8:14 AM  
Blogger Every minute counts.... said...

I am so happy that your day went so well. It sounds like the whole day was just wonderful. I am proud of you for reaching out and discovering a new group of "friends". I really think it doesn't matter so much that you all have the same experiences with your kids, you just all understand each other on a level no one else does. It really does lift your spirits to know that you don't have to be alone. I get that feeling from the private preschool Abi goes to, and I am scared to death of losing that connection. It has been my lifeline, when i needed someone in person.Sometimes, the computer is just not enough, as much as it does help, it is not the same as a real-live person.


8:25 AM  
Blogger Julie said...

Wow I am glad you found this group. Glad you guys had a good day.

10:55 AM  
Blogger Penny said...

Sounds like you really found a place to be you. That is wonderful

3:54 PM  
Anonymous Anonymous said...

Hello Nancy, I'm really pleased you have found the support group. I recently joined a group in Melbourne called My Time and at last I feel like I fit in. Big hugs to you and Erik xXx

6:42 PM  
Blogger Kerry said...

How fabulous that this support groups exists and also they are not insane women. Yeah for YOU!

5:16 AM  
Blogger LZ Blogger said...

Nancy ~ I can't even pretend to know what it is like for you on a day to day basis, but there is one statement that I thought made the most sense (to me) of anything that you said in this post... "These women are sleep-deprived saints. Warriors. The best mothers ever."
And guess what? You are ONE of them! ~ jb///

4:27 AM  
Blogger Ava Jewel Leilani said...

Nancy I can't stop tellling you how much I love reading your post! I am glad you had such a good day. Luv ya saint nancy ;)

3:49 PM  
Blogger Lisa R said...

You rock you know that :) Love you!!!

6:08 PM  
Blogger Rosemarie said...

It sounds as if this group is together for various reasons. Good connections with folk who understand!

10:31 PM  

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