The quest for various potions and remedies kept the mother separate from her child, though she did not know this at the time. The mother believed it a valiant quest, and prided herself in her vigilance and determination. She would single-handedly conquer what had thus far proven unconquerable to vast numbers of scientists, neurologists, neuropharmacologists, researchers and all those who had devoted their lives to finding a cure for autism. She would save her daughter and she would prevail. Call it arrogance, a lack of humility or simply being unable to understand; she would reflect on her own near miss with death as justification for her belief in her ability to do what no one else to date had. (And yes, she began to forget that her sobriety and abstinence were not due to will power or because she tried harder, but was because of the help she received from a larger group/ a power greater than herself.) All thoughts of something being more powerful than herself were temporarily forgotten, or put on hold, or, depending on the day, justified as being part of what she was trying to do. As I said before, she was veering from the path laid out for her by thousands of addicts who had years of sobriety and abstinence and practiced humility, honesty, openness, willingness and acceptance as the basic tenets of their ability to stay clean one day at a time.
“Courage to change the things I can…” she would often repeat this to herself during particularly tough times, neither saying the first part, “Grant me the serenity to accept the things I cannot change,” nor the last, “and wisdom to know the difference.” She believed herself to be courageous. She knew herself to be courageous. And she had learned over the years how to tap into her innate kindness, to foster it, encourage it and nurture it, though in her quest for a cure she felt increasingly out of touch with all that and began to struggle mightily with what it meant to take “the next right action” or know what it meant to know any will other than her own.
Whether there is a G-O-D piece to all this is not something I can speak of, nor can she, as this is a word that never brought solace, so in the midst of all of this she abandoned even saying the word and stopped trying to make sense of what it may or may not mean. She did, however, believe in something larger than herself, a power whose meaning shifted over the years and eventually evolved to mean – kindness, love, appreciation, gratitude – these were the things she knew to do and act upon when feelings began to feel factual, when feelings served to confuse her and make her believe them, despite what was happening and what she was witnessing. Acts of kindness were the mainstay of her “practice” for no other reason than she knew her life was better when practicing kindness than when she did not.
So it was not a leap for her to believe that finding a cure for all that ailed her daughter was an act of kindness. It’s important that I interject here that to this girl who had grown into a woman, had spent more than two decades of her life being an addict, found abstinence and sobriety through another way of being in this world, became a mother to two beautiful children, a “cure” meant removing all those things that caused her daughter pain. A cure meant that her daughter would be able to carry on a conversation, the way non-autistic children do, that she would not have GI issues, she would not have sensitivities to texture and noise and pain, but that she would be relieved of all of that. She told herself these were all things her daughter would want to have removed and be “cured” of if only she could tell her. The mother believed this wholeheartedly and comforted herself that she was doing the right thing. The only thing. The best thing. Not for a moment did she think of a “cure” as an eradication of her child, but more a version of her child. A kind of fantasy, similar to believing in Santa Claus, of who her child would be if she were relieved of all or most of her physical pain and had the ability to get along in society and this world with ease.
Emma's Hope Book 
I think in accepting Emma as she is, you *have* cured her. If Mama doesn’t have her back, who does?
I used to think the exact way as you. It’s taken me this long to realize that loving my daughter for who she is is the absolute best thing I can do for her. It’s been a rough road for me, as you know, and sometimes still is.
When we got her atypical Rett’s Syndrome diagnosis, suddenly a lot of what we didn’t understand made *sense*. It made sense that Risa was autistic but her brother was not. It made sense that she never talked. (Most kids with autism do eventually talk, I think, even if it’s just parroting or whatever.)
Clearly, my child isn’t going to get “better”. She will need care the rest of her life. We might even lose her someday. (Right now, she is in the midst of a very scary staph infection that literally appeared out of nowhere last week. She is on two very strong antibiotics, we spent the afternoon in the ER, they were horrified at how quickly they became the size they did.)
Anyhow – I have accepted all this. Most days anyways. Knowing what I know now, especially about her scoliosis and chronic constipation – and the fact she might one day develop seizures, or be in a wheelchair, or worse. She still is who she is.
Now, rather than relentlessly trying to *cure* her – I am determined to make every single day she has on this Earth as happy as possible. That doesn’t mean she doesn’t still get her various therapies, go to school, etc. It just means that if Mama ain’t got her back, who does?
I love you, Lady! I never would’ve figured all this out if it hadn’t been for you.
Thanks Ariane for this abstract. There are so many aspects i would like to comment on but i will just focus on the character of the third person – the mother.
She is clearly a woman shaped by years of experience. Now she finds herself in a situation that constantly reminds her of her own experience. Naturally, she loves her child and has sworn to do anything it takes to create a better life for the child. On the other hand she is confronted by fear and negative reports. Fearful to accept the facts of the negative report. She is like a tug of rope pulled on both sides. They make her appear ignorant and in denial.
This is my opinion. She has done everything she “knows” she should do. Which is great. But she has not done what she should do that she doesn’t yet know that she should do. While i sympathize with the previous comment i do not agree that she should accept the condition and live with it.
Doctors are not Jesus Christ and their ability to heal and cure is limited to what they know. While the character dismisses the idea of G-O-D she must understand that this creates a limitation on her part. If all the scientists, doctors, medicines and care can’t help her, it is logical that she seeks the solution in the spiritual. Nothing is impossible. If she spent 50 years without result she must stop now and seek this “something larger than herself”. His Name is Jesus. She should stop listening to negative reports that have no solution and look for people who were healed by this Jesus Christ.
At the end, it all depends on her. Has she really done all she can or has she merely done what she thought – her assumptions and presumptions?
((Ang)) Really, this brought tears to my eyes… Love you, really grateful you’re in my life.
Thanks Ariane for sharing your heart.