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Wednesday, July 25, 2012

Guest Post: On Early Retirement

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Reed Soper was born and raised in southern California. He considered attending the Lord's University but opted for BYU instead where he met Kathryn Lynard doing his home teaching. They married in 1992 and have seven children. Friends and loved ones often describe Reed as "difficult" or "a slow learner." In his spare time, he likes (virgin) pina coladas and getting caught in the rain. Check out Reed's first guest post or his more recent post on becoming sterile, which won our Post of the Year in 2011.

Recently I got some sad news: the check-out lady at the grocery store where we shop told me that Eric, a bag-boy at the store, was retiring.

I imagine that not many people "retire" from bag boy, but Eric is not like many people. Eric is in his mid-30's and has Down syndrome. When we first moved to the area and began grocery shopping at this store, I avoided the registers where Eric was bagging. I am not proud of this; in fact, I am quite embarrassed by it. I had my superficial reasons for avoiding his bagging, like concern about squished bread and broken eggs or other mishandled or damaged groceries, but the real reason why I avoided those lines was because of Eric’s different-ness -- something I was uncomfortable with. Beyond the typical visual cues, Eric's speech was often difficult to understand. On several occasions he would speak to me and I’d have a hard time understanding him, or worry that if I did respond, he might hold me captive for a lengthy conversation. These interactions reminded me that I have always been uncomfortable being around people with disabilities. And being around Eric reminded me of my significant character flaw.

I remained this way for some time until my son, Thomas, was born. Thomas, like Eric, has Down syndrome. Thomas' extra chromosome was a big surprise for us -- we found out shortly after his birth. It has taken me substantial time and effort for me to be comfortable with the differences and limitations that tiny extra chromosome brings to Thomas and our family. One of the more difficult things for me is seeing the limitations and separations the world places (and I placed) on those who are different, like Thomas or Eric. I was at once feeling protective of my child and also realized that I was one of the people he needed protection from. As his father, I knew I needed to make some major adjustments in how I viewed Thomas and others with special needs. I also knew that no matter how much I was able discard my biases, others would continue with whatever biases they have held onto.

One of the first times I took Thomas with me to the grocery store, we were in the check-out line and Eric greeted Thomas. Eric had met Thomas on several other occasions when my wife had been shopping, and he was excited to see him. Eric recognized that he shared something with Thomas. So much so that on this day, he showed me a baby picture of his own and told me, "When I was a baby, I looked just like Thomas." And indeed, in many ways, he did. It got me to thinking that when Thomas grows up, he may look just like Eric. He was a living, breathing example of what Thomas might be like in 20 years. Since his birth, I had always wondered about what Thomas would be like as an adult and what my parental role might be at that time. Seeing Eric as a grown Thomas was at once calming and terrifying. Calming in that I could have an understanding of what Thomas might be like and what his capabilities and limitations might be. It was terrifying in that I feared I would not be able to make the changes I would need to make to care for him over time.

Over time, I would interact with Eric at the store. I'd see him bagging groceries at a check stand, short and stocky, with closely cropped blonde hair. I’d see him and tell him hello. In his somewhat halted speech, he'd ask me about Thomas and tell me about trips to Disneyland, or that his birthday was coming up. Knowing Eric as a person helped me to become comfortable with the differences Thomas would likely exhibit through his life. This relationship enriched my life, gave me comfort, and helped strengthen my relationship with Thomas. For example, I remember talking with Eric while he was bagging my groceries and making a silly joke and hearing him laugh and repeat the punch line over and over again. One of the things I like to do most with Thomas is to interact by laughing together – seeing a silly picture or making a silly noise and both of us cracking up at the same time. Interactions like this calm my concerns about spending the rest of our lives together.

Given how much I'd come to enjoy Eric, I was sad when the bag lady told me recently that he was "retiring at the ripe old age of 37." But I was even sadder when she told me why: Eric had early onset Alzheimer's disease. This is not uncommon for folks with Down syndrome who are Eric's age, but I didn’t expect it to happen to Eric, and I had never seriously considered the possibility that it might happen to Thomas. I would miss those interactions with Eric at the store, hearing about his life and catching him up with Thomas' life. I felt sad for Eric knowing that he and his family would have to deal with the confusion and difficulties that accompany Alzheimer's. I was sad for Thomas -- for the possibility that he would have to deal with yet another indignity as he grew older. And I felt sorry about having to deal with another potential reality of having Thomas as a son. That sorrow had led me to understand that no matter how "enlightened" I may become as a parent of a disabled child, it is still hard for me to live that role and I would prefer to avoid having to deal with the hard things to come. And I will never retire from that process.

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