Making Wishes

Last night Sylvie’s twin sister and I were talking about why Laura Ingalls Wilder’s sister, Mary, couldn’t go to school.  We’ve been reading The Little House on the Prairie series before bed for months now.  We’ve gotten to the part where Mary is blind due to scarlet fever that hit the family while they lived on Plum Creek.  It was unimaginable to my daughter that Mary could no longer go to school, just because she was blind.  Imagine if Sylvie couldn’t go to school, just because she cannot walk or talk.  Yes my child, imagine......

The New York Times has been running a series of stories on adults with disabilities that has caused my heart to shutter.  Last week an exposé reported the alarming rate of people with disabilities that have died unexpectedly in New York group homes.  The front page story today was about a couple--both with cerebral palsy--who got married against their family wishes.  The man in the story survived being institutionalized at “Willowbrook, an infamous dungeon for the disabled on Staten Island [NY].”  I feel sick to my stomach when I read stories like this, because I know if my daughter was born in another time or place, she too could be left alone in a raising tub of water or be strapped down to her bed.  Due to her disability and life threatening disease, she could be considered a “throw away” to society.

But our daily reality is very different from these dismal portrayals of disabilities.  I know there are lots of reasons people put their family members in institutional care, but I cannot honestly imagine anyone caring or loving my daughter more than her own immediate family and community.  This week brought that home to me as we met with Sylvie’s educational team due to their concerns about a recent cold/fever she had. The team is being so careful at kindergarten--they want Sylvie to be included and safe and attended to well.  The team also needed some assurances that they were doing all the right things to keep our daughter comfortable as she wheezes, chokes, snorts and sneezes her way through the day.   For my daughter, catching a cold could literally be the death of her.  I am truly touched by how concerned they are, and I know that both of my daughters are well cared for by the school.  

We also are living in a time when organizations, such as Make-A-Wish exist.  While I’ve previously written here at Hopeful Parents about my hesitancy to be a recipient of any type of “charity”--I am grateful for the many agencies and social workers who have tried to make our lives a bit less stressful. And I’m also grateful that there is some effort not to pity our family.  Case in point....  Thanks to our local Make-A-Wish chapter we’re getting a huge family soaking tub so Sylvie can take warm baths with her family and relieve some of her hypertonia and scoliosis.  As we soak in that tub that is to be installed next week, Sylvie and her family will draw up a big warm bubbly bath and keep wishing that a cure for Krabbe disease will happen soon.