Some recent comments on some of my posts, coupled with some email exchanges, have been on my mind lately. Some of you have commented to me how I have or my family has “been through so much worse than we have,” or “I know my situation is nothing like what you’ve been through,” and things of that nature. I wanted to respond to those well-intentioned, self-effacing, sometimes self deprecating words. (No, wait, don’t leave…it’s good stuff, honest!)
We all sing with the same voice
The same song, the same voice
We all sing with the same voice
And we sing in harmony
I suppose to someone looking on from the outside, yes it is true; my family, my child especially, has been through very much. On one hand we have the fact of Nik’s extreme prematurity and all its inherent health-related issues. Educators and health care professional are often surprised to meet Nik for the first time; the child they read about on paper is frail and sickly —potentially a child to be pitied for his immense challenges in his short little life. The child they meet is a dynamo —uncomprehending of the word “disabled” or the fact that he isn’t like his typical peers.
On the other hand, I think, in many ways, parenting my child with his myriad needs and diagnoses has been easier for me than parenting your child may be for many of you —my very special friends. While it’s true that our daily life with Nik is often an intricate contredanse in which we must weave threads both medical and developmental, Niksdad and I have had the benefit of being hit with the worst case scenario from before Nik was born.
We already knew that our child may not be “normal” based on ultrasounds showing how small he was for his gestational age. And, certainly, we hoped and prayed for the most normal of possible outcomes. Yet, when it didn’t turnout the way we would have preferred, we made a very conscious decision that our child would be loved and encouraged and believed in —no matter what. We had to throw our expectations out the window from the moment Nik took his first breath with the help of the respirator.
Many of you, my wonderful friends, had what I might call the storybook experience of pregnancy and childbirth. Though there may be some cases where there were some prenatal complications, by and large you had your robust, healthy child who went home from the hospital the same day you did —again, with some few exceptions. You joyfully announced your child’s birth, shared photos, breastfed, and generally raised your completely normal child.
Then you were blindsided by this thing called autism. However it came, whenever it came you were not prepared. You didn’t have the luxury of being able to “gird your loins” as Niksdad and I did. In an instant, everything you knew about your life with your child was changed —radically. I cannot even fathom the shock and overwhelming grief this must have caused. At least, with Nik, I have some idea of the cause(s) of many of his underlying disabilities. I wish that you each could have that for your child. I know that there are many things I cannot undo or fix for my child —things that simply are what they are. I sense, in so many of your writings, the pain of the search for answers, reasons, and understanding—for something you can identify over which you may be able to exert some measure of control.
I recently wrote to one of my dear online friends (and I do consider you to be a dear, dear friend —a kindred spirit —though we’ve not yet met) that I sometimes think the issues our children face in school must be more difficult for a her child than for mine. Whereas my son is more obviously disabled —and has the medical dossier to support him in the face of those who might wish to deny him access and acceptance —her child appears to be just like every other child at school. My son is in a segregated school with dozens of other children like him to varying degrees; the school staff is trained to deal with all kinds of variations on the theme of disability. Her son must make his way in a school where “Special Ed” may still have the negative connotations of previous generations. In some ways, we really haven’t come as far as we think we have.
Indeed, I read a recent post on Redhead Momma’s blog in which she relates a conversation with a principal of a neighboring school —in which the principal expresses her ignorance of autism and how autistic children can benefit from a variety of teaching and therapeutic techniques and measures. I was absolutely floored to read that until I took a step back and realized how fortunate we have been to have a school like Nik’s —imperfections and all. There, he is completely accepted and loved for who he is where he is —right here, right now.
In the final analysis, I must confess, there are times I stand (well, sit actually) in awe of my fellow special needs mamas. To me, you have had it rougher —tumbled like a trailer in an unexpected hurricane —and have risen so beautifully to the occasion. I learn much from the things you write on your own blogs and in comments on mine. I think that is what I love best about this cyber kaffe-klatch we’ve got going here —the recognition that we are all the same in our differences yet different in our sameness.
“We all sing with the same voice” and the song we sing is that of a mother’s love for her child. The notes and harmonies we create together are powerful and breathtaking. Let them be sung from the mountaintops.