The moment Sophie was diagnosed with infantile spasms when she was three months old until this moment, nearly nineteen years later, she has been subjected to and participated in any number of therapies. There were the traditional ones: physical, occupational, speech and language, anti-epileptic drugs and tests to figure it all out. There were the alternative and integrative ones: the healers, the osteopaths, the nutritionists and homeopaths, the music and art and augmentative technology and Alexander Technique and Chinese herbs and acupuncture and the laying on of hands. Of those two distinct groups, I will confidently say that the first did nearly nothing, in the end, to stem the tide of seizures and their effects on her development and quality of life. I reminisced yesterday to a friend about the first three years of Sophie's life and then again when we moved to Los Angeles: the endless therapy visits, the sitting in waiting rooms and trudging up and down New York City streets with Sophie in her stroller, then later in a car-seat with two babies, up and down the highways, into the valley and to the west side. No more need be said about the vaccinations that harmed her, the more than twenty drugs that rendered her sleepless, irritable, dizzy and doped, sometimes anorexic and always, always, the seizures kept coming. So many hands. The second group, namely the osteopathy and the Chinese medicine and acupuncture, in certain instances, stopped her seizures (atonic drops with Chinese herbs), but most importantly afforded her more potential and greater comfort. Still, the seizures came, as did puberty (early) and very little else. I doubted what I was doing as much as I knew it was our only option. There were nights when voices and hands spoke all at once in my head, and I lay there, silenced. So many hands. Every three years or so, in the beginning, I was overcome by the all of it -- the all of it -- by what I decided to call too many hands.
Too many hands.
Effective, ineffective, harmful, good -- it's just too many hands.
I stopped all of it, then, shut down the voices, picked one or two things, weaned the drugs, refused to add more, laughed with rue, sprouted ounces and gray hairs, tousled with resentment and swallowed grief, wrote and sat and wrote and sat -- a sort of giving up and giving in, a surrender that keeps hopeful.
I feel a bit of that with Oliver, too, right now. Too many hands.
It's time to stop and think. Listen to my own still, clear voice, above or maybe below those fluttering, well-intended hands.
when you hear it, follow that voice - your own - Elizabeth.
ReplyDeleteYes, Elizabeth, you must. Your own voice is so wise. "Re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem."--Whitman
ReplyDeleteWith my daughter, I often found it hard to know what to do. Sometimes I did the wrong thing, sometimes the right. Sometimes a wrong thing led to a right thing. More than once, we were on the brink of a pretty scary abyss. Sounds like you might be there. Thinking of you and O.
ReplyDeleteI find we never know what was right, always wonder if the other choice would have ultimately been better.
ReplyDeleteBacking away is a good thing... because you come to a point where you realize that the "all of it" is actually the "nothing of it," and your own still, clear voice is really the truth of it. Here's to backing away...
ReplyDeleteYou, as the mother, are uniquely qualified to be the one to make the decisions.
ReplyDeleteToo many hands, indeed, even if some of them are loving, some of them are wise, some of them are knowledgable. YOU are all of those things.
And there is the book title, Too Many Hands
ReplyDeleteIndeed. May you find your own voice clearly through the din of activity and advice and hands. That is always the hardest part for me.
ReplyDeleteMy husband, the teacher, recently completed a college course on the Growth Mindset (as it compares to the Fixed Mindset). It is revolutionizing the way he is teaching high school algebra. He was already a good teacher, but he is seeing how so much is wrong in the classroom for kids that are struggling. Check it out. It has turned him on his head. He's just come home from parent teacher conferences and for the first time in YEARS he is excited. His struggling kids are growing and not giving up. And it shows. Look into it Elizabeth. Oliver has his struggles to be sure - and it can all turn around for him and work to his advantage. Too many so called successful people have lived life having things come easily to them - and it's bullshit.
ReplyDelete