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.
The little blob on Taylor's face is not a potato or a growth. I spilt something on this--the only photograph I have with our man and the good doctor.
ReplyDeleteI am so sorry that this blog requires a FREE google account to comment. It's for protection actually. Even if you never commment, thank you 10,000 times for even reading my story.
ReplyDeleteYour posts are amazing, Marianne. They are so much more than about Taylor--they are about being human, and all the difficulties that come along with it. How come no one ever tells us that simply LIVING is so darn hard? Your honesty about life's struggles shows me that I am not alone: if you and Taylor and your whole family can get through the huge struggle of Taylor's chronic pain, I can get through my little daily ones. I love you. I love Taylor. Having yall in my life has been huge in forming my sense of compassion and that we are all the same. xoxo
ReplyDelete"He's not one of us." That's the key. Nathan has helped me learn to recognize when I'm saying that (at least sometimes), and it's astounding (to me) how often that is. It's so easy to discount people without noticing. Reference your blog about God's wife.
ReplyDeleteAmen, sister, Bryby. Thank you for reminding me. DS people have such a wide range of intellect, skills and talents. Your Nathan WOWS me!!
ReplyDeleteAnd, ALison, I love you with all of my heart.
kamerica, I just learned how to post a comment on my own site.
ReplyDeleteI love the question you pose about what, if anything, one might say to a family with a child with special needs. I don't want to speak for all families (so speak up some of your other parents of SPED kids!) but it can be as simple as, "Oh, I like that kind of soup too." "Looks like ya'll are out having a good time." "Isn't it wet outside?" Anything--very banal, chit-chatty kind of thing. Elevator talk. I wish my mother were still on earth. She would talk to anybody about anything...So embarrasing, but now I look back and see how she was really just connecting us with one another.
You are making me think of all the time we spent with Debbie's father til we lost him last year, when I first met Debbie her dad had just had a massive stroke and was paralyzed on his left side, Every where we went people would stare and whisper and at first it drove me batty but after awhile I guess I got used to it and didn't want to strangle them quite as much. Well there's Roy's comment wierd feeling that reading your blog has made me feel and remember. Thanks we love you guys.
ReplyDeleteYour picture makes me tear up. What a pure soul, to trust in others the way Taylor does.
ReplyDeleteI always love remembering Dr. Menezes' response to your question when describing how serious/dangerous his surgery was going to be. You said, "Dr. Menezes, what would you do if it were YOUR son?" Without skipping a beat, Dr. Menezes responded: "Mother, Taylor IS my son!" I still cry over that one! But, it's true...kinda like Taylor belongs to ALL of us...to the world, huh?
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