Growing up handicapped

As I've revealed in an earlier blog, my older sister, Stephanie, is handicapped. Today she is a happy, routinized 36 year-old woman with the overall intellect of a 4 year-old. I'm sure Mom would argue with me because, yes, there are some areas where Stef is functionally older than 4, but other areas where she is less than 4. She cannot, however, be left alone to take care of herself. Well, you could, but she would make the decisions any good 4 year-old would-- "Now, where are those cookies?" If left to herself during mealtime she may be found eating spoonfuls of ketchup or sugar, yuck. If left to herself she could not dial the phone, or put out a small fire, or write a letter.

A few years ago my nephew, Tyler, Stef, and I were riding in the back of a truck. He stared at Stef for the longest time. I could see his brain trying to decide what to say. I braced myself, because no matter how much I like a person, the minute they make fun of the handicapped they find themselves on my imaginary hit list for years to come. He quietly said to me, "Mom says that she's a grown-up on the outside, but inside she's always a little girl." It makes me cry even now to remember it. What a perfect description. And the enormous respect it gave me for my sister-in-law at that moment can never be explained. To be that thoughtful and careful as a mom, knowing that your son would need a way to understand what he was about to see... Suzy, you're one of my all-time favorites!

I can remember being a teenager, and Mom coming home from an annual evaluation meeting where all of the disciplines who cared for Stef got together and went over "how she was doing". (Mom ALWAYS hated those meeting.) This one was harder than others had been because they were trying to convince Mom that Stef was "low trainable", only a few IQ notches above being considered "severely handicapped." Mom wouldn't buy it. "She's more than that," she insisted. My mom has always been Stef's greatest champion, believing more than was ever predicted for her child's future.

Stef was born 6 weeks early (but weighed over 6 pounds!!!) at a hospital in Detroit, Michigan. She was blind at birth, a diagnosis that wasn't caught until months later, but at nine months miraculously began to see... sort of. She's had Coke-bottle lenses since her nine month birthday. Her corrective prescription was so strong that I can remember my little sister and me putting on her glasses and running around as a game. It made things look warped and uneven, like everything was a mirror in a carnival fun house. Poor kid. Mom made monthly trips to the doctors, who never were able to give her a real diagnosis, just bits and pieces. "Cervical nerve damage, " "cerebral palsy," "reverse swallow mechanism," and my personal favorite, "other mental and physical handicaps." "She will never walk, talk, or be able to remember sequences." Upon discharge for the hospital following her birth - and this is the honest truth - my father was approached by a doctor who told him he had some papers for my Mom and Dad to sign. The doctor said, "You can just go home and forget you ever had this baby." I believe the papers were to either 1) make Stef a ward of the state and institutionalize her for her entire life, or 2) euthanize her. My dad told him what he could do with his papers, and he took his wife and daughter home.

Gosh, I could fill a book about growing up as the younger sister of a handicapped child. Someone once asked me, "How did growing up with Stef effect your life?" My response was, "It impacted everything, the way in which I see and process the whole world." It has made me less trusting, because I have seen children and adults taunt Stef when they thought no one was looking. It has given me an overdeveloped sense of justice - I just love it when the bad guy gets it in the end; perhaps because SO MANY S.O.B.'s who ridiculed my sister seemingly got away with it (for that moment). It has made me the eternal advocate. I am constantly trying to speak for the "victim" or the voiceless. It has made me angry at the Church in general, something which no self-respecting pastor's wife should admit. In my hometown churches I regularly saw people, some considered "saints," who dealt cruelly and impatiently with "the least of these," not just Stef, but other handicapped children in the congregation. My sister loves church, especially the music. I don't know how, but this child, who was never supposed to remember things in sequence, has somehow memorized the hymnal! We lovingly call her "Johnny One Note" because though she knows them, the songs are more or less moaned out loud, but if you listen you can barely make out the correct vowel sounds corresponding with the actual words. One time, one of the saved-and-sanctified club cornered my sister in the foyer and shook her finger in Stef's face and demanded her to be quiet during the singing of the hymns, "You don't sing pretty!" she hissed. My mom, the amazingly poised woman that she is, witnessed the incident with a broken heart, and publicly wept when she saw Stef with her finger silently pressed to her lips, the "quiet" sign, during that evening service. Stef didn't sing out loud for months after that. Oh, the stories I could tell you--

As you can see, I'm the one who grew up handicapped. Yet the God who allowed Stef to be placed in my life, who saw the roots of bitterness wind their way down into my young heart, is also the same God who faces me today and says, "Out with it, Heidi. Time to give up the pain that you've carried on her behalf all these years." He is a trustworthy friend, the author of True justice, the champion of the downtrodden, and the Head of His Body, the Church.