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Caring for a child with needs as complex and intense as my daughter is a daily challenge. So many people write about the joys and gifts of having a child who is different or ill that I rarely do... it feels like an over wrought and cliched genre to me. But before I start on the demands and complexities, I want to say, "I get it." I get the pleasure and the wonder of her absolute unconditional love for her family. I revel and celebrate in her accomplishments and ours in supporting her.
I don't know if I will ever really welcome Rett Syndrome or embrace it as a life lesson as some people have. Perhaps that level of acceptance is way down the road for me. I think I may be in a place where I can forgive myself for not going there. I'm OK hating what Rett Syndrome did to her, and regreting its impact on my family. I'm also more than OK in my role as her mom; I am a fierce mama bear. That is all I am and ever can be as her mother.
But this life comes with a price. In the same way that no one really gets what it is like to be a new parent and care for a new born until they do it themselves, no one really gets what it's like physically, emotionally and spiritually to raise a child with complex needs who is always on the brink of disaster. Raising children is rewarding, hard work.
Going to South Dakota to live on the farm is my point of surrender. It is reclaiming a life we always wanted and had almost given up on. For years we have stayed in the Bay Area, near the best hospitals and therapists, hoping for treatment and cure. Now I know. Nothing we can do here can stop the progression of her illness. And there is a lot there we can do to have a better quality of life, for her and for the rest of us.
So this is about accepting that I have no control over Rett Syndrome and that I want her to have the best life she can each day. Maybe there will be a cure. But we can hope for that, and work for it too, from there. While we feed the chickens and ride the horses.
