Special Needs Mama
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Even the most anticipated ending can leave us lost, confused. Imagine an ending that comes without warning or preparation, one that is shocking, sudden and unexpected. When my husband and I left the hospital that night — the same hospital where Evan and his twin sister had been born — I said, “I am so done with this place,” as if by putting my own words of finality on the subject, I might also bring the matter to a close. We want, in an ending, a sense of justice and purpose, a feeling of finality that is comprehensible. In truth, no ending is every complete, no goodbye sufficient. I was not done with my son and yet he died. Did that mean he was done with me?
All of us at Literary Mama are so stunned and saddened to learn of the death of columnist Vicki Forman’s son, Evan. Most of us never met Evan, but we loved learning about his strength and spirit through Vicki’s gorgeous …
As my son’s disabilities became obviously permanent, I began to discover new mothers, and a new tribe: my friend Holly, whom I met in the hospital and whose daughter is the same age as Evan and has cerebral palsy; my “preemie mom” friends, each of us the mother of a child with a disability due to extreme prematurity; the glorious women and mothers whom I found, or who found me, and gave me a new sense of belonging.
Each year in early June, as my daughter eagerly awaits the end of the school year, with all its parties and victories, and makes plans for summer and friends, I must complete a very different set of arrangements for my son. Before the school year ends, Evan’s specialists, teachers and I gather in a small room on the elementary school campus for his annual Individualized Education Plan meeting.
Like any action hero, however, when the costume comes off and I emerge from the phone booth wearing just my civilian clothes, I’m imperfect, indecisive, and often downright wimpy. The friend who called me a special needs action hero was shocked to hear, for example, that I can take months to quit a therapy I see is not working for my son, that I struggle with the words to use to end a treatment or leave a doctor, or, finally, that I stay up late at night worrying about my decisions. A change in school placement or routine, tubes in his ears or not, antibiotics or not. These can all exact their tolls. I may be able to drain a G-tube with a catheter and a Q-tip, but I also worry and fret with the best of them.
Even before my son was born, music was always part of our lives. But having Evan, a blind child whose communication opportunities are limited, has brought music into our lives with even more intensity than the night my husband shocked me with his guitar. Although he cannot talk, Evan can sing at least four songs, on key and straight through to the end. If I begin one of those songs, “Jingle Bells,” for instance, he will pick up where I left off, then finish it up for me. His riffs on the harmonica have made him into a favorite among his kindergarten friends at school. And the piano playing is beyond compare. He’ll stand at the keyboard for half an hour at a time; every session includes a clearly recognizable composition of his own making, one that becomes more involved with each passing day. He practices distinct sections of the composition, one at a time, and then goes on to play the piece whole. If a friend overhears him while I am on the phone, the friend will nearly always say, “Wow, that kid knows what he’s doing.”