11 Feb 2009
Not what I pictured …
When in high school, if someone asked me what I thought my life would be like, this would not be what I imagined.
My daughter is 16. Her mother lives about five miles away and visits for maybe 15 minutes, twice a month. My son, also severely disabled, is in a residential program in the next state over. His mother put him there.
I have so many stories. Life with a severely disabled child has its own challanges, add to that the prejudice of society of a single dad and a teenage daughter. Think I’m kidding? Stay tuned.
I believe you. No kidding.
Our oldest daughter was born in 1976. From the beginning, we believed in her spunk, her absolute right to be here. We, too, survived all the professions – doctors for the first 8 months of her life in hospital; school staff who questioned that she even knew where she was so it made no difference (they thought) that she be educated alongside her peers without disabilities. She was our first girl – we then went on to have two more girls. Our Marlow was, indeed, a magnificent teacher. She taught us the true meaning of what is important in the world. The smile she had for those important in her life – parents, sisters, extended family, etc. WAS her communication. She never heard, never spoke a word, but I could tell when I walked in a room and she was with one of the many aides or nurses – just what she felt about that person by the way she held her body. Nonverbal communication – she taught me to be an expert! She passed away at age 21 – but what a life she lived until that final year! I have often thought of writing a book or something, but I hold her memory much too close to share with just the general public. Marlow passed away on her time schedule – when she grew tired of all the attempts to “come back” to the life she knew. I have no doubt she felt cherished and loved by many – and I know she loved and cherished us in return. Never will I regret our decisions for her and her life tells me we were right.