Erik Quinn: The Heart of a Family: Haunted

Friday, November 07, 2008


I sat in church next to Brian today and ended up craning my neck to see the small door across the sanctuary that frames three square glass panes. I previously detected movement behind the glass in my peripheral vision and turned my head to look, instantly recognizing bits and pieces of Marla, the woman who cares for Erik during church services. I spotted a neat ponytail. A flash of disembodied, bright smile directed at an invisible somebody in the hall. I then thought I saw a piece of Erik. A long, stiff leg encased in a plastic brace kicking from an awkward, high angle. Perhaps from an invisible somebody's arms. I smiled and lost track of the sermon. When I glanced back at the pastor and then back at the door, he was gone.

During our church services, young children are called to the front of the sanctuary. They are usually given a trinket or encouraged to use props to help illustrate a popular Biblical story or a heartwarming but educational anecdote. From there, they are instructed to follow a woman in a jaunty, brightly colored hat to their age-appropriate Sunday school programs while their parents continue to worship. Erik has never been a part of this group. It is simply not possible at this time because of the sometimes crippling side effects of his syndrome. Instead, I search for glimpses of my child through the windows surrounding the congregation during the service, hoping to see his face as he leads Marla by the hand. He loves going to church, and we have never forced him to do anything that causes him discomfort in a place where he should feel safe and loved throughout his lifetime. Unfortunately, it has been a long road reassuring him that he is safe and loved in this often noisy environment filled with the children he prefers to avoid. As the adults gather after the service, Erik is in his element. He reaches his arms out to each and every person that passes by, almost frantically grabbing at their clothing and smiling up at them. In fact, he is usually so desperate to grab onto strangers that Brian and I are sometimes forced to carry him out the front of the building so he is unable to get his hands on people. It can sometimes be quite awkward. It's beautiful but scary, sad, and frustrating at the same time, too.

Some Sundays I don't think about our odd church arrangement much at all. We attend every other Sunday and dutifully call Marla at home the night before to instruct her to meet us inside the front doors. However, some Sundays I think a lot about it as we sit quietly inside. I wonder why we have to watch other children sit still listening to stories as Erik wanders the rest of the building haunting classrooms and the nursery as much as he can tolerate. He seems to fill the role there as the greeter who never fails to spread smiles before disappearing when things become too loud or frightening.

This Sunday was somewhat difficult for me once again, but I noticed that my eyes don't threaten to fill with tears much anymore. They remained bone dry, but my heart was heavy. The people who watched me grow up in the church patted me sweetly as I passed by and offered friendly hellos, but I honestly don't really know much about them these days. Williams syndrome has isolated us all now for years. I am thankful, though, for some friendly faces in the crowd, and I find myself grinning back.

Erik, however, seems to be another story.

While we sit quietly or sing strange, contemporary songs that seem to punctuate new-fangled church services these days, Erik is behind the walls making his rounds. The choir room. The classrooms. The library. The commons. The offices. Each time we emerge into the hallway with the rest of the coffee-swilling, cookie-munching crowd, Erik is standing at Marla's side with his hand nestled in hers, smiling up at an ever increasing number of fans, most of which obviously know him by name. Marla is always smiling broadly. As we said our goodbyes today, Marla told us both that Erik was truly a joy. Her husband just had colon cancer resected, and she informed us that she really needed some time with Erik.

I still wonder if Erik will ever be able to sit still enough to join us at church. Or anywhere, for that matter. To be comfortable surrounded by children in front of the congregation, laughing at really lame jokes and learning things like other kids do to the amusement of the congregation. Probably not. At least not in the near future. By then, he will be too old for this kind of activity, anyway. We have missed out on a lot of little things parents take for granted, and I have mourned each and every little thing before I learned to move on. I know that accepting reality will make things easier. It always does.

For now, though, I see how amazing this little guy of mine is. He is a cheerful apparition dancing on the fringes of what is considered normal there, holding a strong, reassuring hand and spreading smiles before sometimes dissolving into the shadows again when the other children appear.

In fact, if you look away for a moment, you just might miss him.

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Blogger Julie said...


Church is becoming increasingly more difficult for me. I think it is because he should be able to move onto the 3 year old class and out of the nursery, but I know that it is not going to happen any time soon. I can't imagine taking him into a church service at this point. He would yell and want to "crowd surf". I don't know if that day will ever come. It is rough because church is so important to me as a family. Thinking of you.


5:51 AM  
Blogger Faith said...

Hi, I'm a WS mom. My son's name is Logan and he's 5 years old now. I've been lurking on your blog on an intermittent basis for the last six months since we found out our son's diagnosis. I just wanted to let you know how much comfort it brings to me. You seem to be able to express the things that I can't bring into words. Anyway, I just wanted to let you know that.

Thanks so much,


12:03 PM  

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