Tuesday, February 9, 2010
I never had a brother like Taylor, so I can not really speak to what it must be like for Taylor's older brother. As I sit in the other room when C. comes home to visit with Taylor, I hear this conversation:
T: My brudder
C: Hey Taylor
T: My Brudder. Boo
C: Hey Taylor. What are you doing?
T: My Brudder. Boo.
(Copy and paste that about 100 times and you've got the entire conversation.) I know that this must be frustrating and probably a little sad for my (wonderful!) oldest son. There must be some longing in him that craves a regular brother-brother relationship. Even though it's totally irrational, I feel responsible that C. was robbed of that complicated, irreplicable experience that having a normal sibling brings. He can't rag on his parents. There are no, "Remember when mom set the cat on fire!?" stories. Who does C. turn to when he sees one of his parents loses it?
Again, I don't want to speak for C., but I know this life must have been hard for him.
When Taylor was born, people asked us constantly, "When are you going to tell C. that his brother had Down Syndrome?" Uh, well, let me see. What exactly is it that you want C. to know about his brother? Won't he figure a lot of it out and don't you think it'd be best to answer questions as they come up?
Along about 4th grade, C. came home from school and said, "Mama, my friends say Taylor is retarded. Is he retarded? Gulp. Breathe. Here it is!! The BIG question. "Yes," I responded calmly and gently. "What do you think retarded means, C?" Without skipping a beat, C. exclaimed, "Oh I know what it means. It means Taylor is either bow-legged or chicken-toed!"
"EXACTLY!!" I replied. Exactly, my wise son.
Taylor's older brother is an incredible human being. He is the most compassionate (and witty!) person I know. He both loves Taylor with all of his heart and mourns the loss of the "normal" brother that did not show up. C. is as brilliant as Taylor is intellectually challenged. Is some ways they are complete opposites. In ways of the heart, they are identical twins. They are brothers. Taylor could not have chosen a better big brudder to accompany him through this life. It's probable that C. ended up choosing just as well. Bow-legged or standing strong--gifted both. And, in so many ways, each a gift to one another. (Is anybody besides me hearing the swell of the violins right about now?}
Yes, he's Taylor's brudder.
My brudder. Boo.
Well, I just gotta tell you that the picture you're looking at makes me cry. It's been two years since Taylor's second major spinal surgery, but I see that picture and my heart relapses right back to that space. We thought Taylor's first 20 years were hard until we got to year 21. That year, we were flung wildly off a cliff. Long about then, Taylor's spinal cord began compressing. When your spinal cord compresses, it basically cuts off breathing and all of your bodily functions. Taylor's entire life changed. Our family's entire life turned upside down--again.
Many of you who are reading this have had a child, a spouse, a relative who has endured life with chronic pain. For those of you who have not been through this, take our word for it: It's awful. My Taylor was in chronic pain, but he could not tell us. OK, that falls under the category of "Feeling Helpless/Hopeless."
My brave little soldier/son, has had not one, but two major spinal surgeries. (For you medical types: Occipital Cervical Fusions) The first surgery was criminal (another blog) The second surgery saved his life. Our hero, Dr. A.H. Menezes (Iowa University Hospital) repaired and restored Taylor's spinal cord. Gosh, I love that genius doctor. There's really not a "but" here, BUT, Taylor had to wear that brace you see for one year.
You got it. If you think slanted eyes, a big tongue, and thick neck turn off people in Cracker Barrel or at a Christmas parade, just add that Minerva brace into this equation. I felt like a leper. I cried. Taylor hurt physically. But, here again is the miracle. Listen carefully. Taylor never ever ever stopped looking lovingly into the eyes of those who looked at him with such revulsion. Taylor was the one wearing the brace, but it was others who were really trapped and imprisoned. Constrained by their own fear, restricted by their own belief that such imperfect people should not be allowed amongst us--confined by, "He's not one of us"----they missed this holy, loving human man-child longing to be free. Freely loved---by me. By You. Take off your brace.