Recently, a friend of mine who also has a child with a disability, a horrific one, actually, sent me an email. When I opened it up, I was sitting on a folding chair at the therapy gym, relieved for the hour I could do just that: sit and read emails and then my book, while someone else took care of my daughter, actually worked with her and stimulated her, helped her to move her body and exercise. Anyone who reads my blog knows that my daughter is fifteen years old now, and that she has a severe type of epilepsy of unknown origin. She can walk with assistance but is non-verbal; her seizures have been uncontrolled virtually since the day she was diagnosed at three months, and no anti-epileptic medication has helped her. And I'm tired right now, a bit burnt out if not completely reduced to cinders. I have enough faith that someone or something will spark the tiny ember that contains me at present, but until then I'm smoldering.
But I digress.
I opened the email whose subject line read Here is a poem for you. I proceeded to read the poem which was a sonnet, of sorts, written by a woman as a love letter to her child with special needs. Each line rhymed with the one before it and the gist of this endeavor was God, and blessings and gifts and all things wonderful and nice. It dripped with sentiment and flowers and the bright side of things.
At the end of the poem, my friend had typed Did I just hear you belly laugh?
I could almost hear her laugh as I typed back: Do you see the noose around my neck that this poem has driven me to?
People often ask me how I do it, and I generally say that I am sustained by the obvious: family, friends, faith in God for the most part but really more of a faith in the ever-changing universe, meditation and the deep, abiding love I have for my daughter. I also have to admit that a dogged sense of humor and my quite natural, albeit weird, inclination to see the absurd in just about everything, are what has saved me.
Those who share this sense of humor are My People.
You know who you are, and I thank you.
Elizabeth blogs regularly at a moon, worn as if it had been a shell. She is a terrible joke-teller but will laugh hard at yours.