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When Motherhood Takes on New Meaning
Parenting a Child With a Disability
By iParenting Staff
doesn't have that defect. We have assumed that her problems were most likely the result of my difficult pregnancy and prolonged labor, which distressed her. Her motor skills have become more difficult, and she also has myoclonus – severe shakiness."
Recently, Sarah was diagnosed with degenerative peripheral neuropathy – meaning that her condition will likely worsen over time. The Turners and their doctors have surmised that the conditions with which Sarah has been diagnosed are all symptoms of something larger. "Sarah is now on four medications to control symptoms, and they have their own side effects," Turner says.
For Turner, as for Esherick, grief is ongoing. "First I grieved because she was not 'normal,' then because of her surgeries and difficulties, and now out of the fear of having to watch my child deteriorate. I have to deal with her in the present, because thinking about her future is scary."
Even after Esherick's son was later diagnosed with learning disorders and a seizure disorder, never once did she approach her parenting with a "Why me?" attitude: "It was sheer heartache over how difficult life was going to be for this child," she says. "While the grief continues, I find that with each passing year, it has less hold on me. I'm at the place in my life now where I trust that God has a very specific plan for my son, and that God is using his disabilities to bring hope and encouragement to others. We're very much at peace with it all – although that doesn't mean we don't still hurt sometimes."
As difficult as it is for parents, "it is essential to find time for fun, which can be difficult if the child is receiving multiple therapies and special services," says Fisher. But by concentrating on the positive, parents and children can truly live life to the fullest