I am still so thrilled that my essay made it to the semifinalist round in the Children’s Hospital Notes and Words essay contest! Up to five finalists will be chosen based in part on the number of “likes” they receive by this Friday April 13th. As of right now I have about 500 votes, but a few essays have well over 1,000, soooo
you haven’t had a chance to read my essay yet you can find it here – Gone by Mary Hill. If you read and like it,
please do “like” it on the essay and feel free to share it on facebook, on your blog, or
forward the link to anyone else you know who might like it too. The voting
ends this Friday. I encourage you too to read the other essays here!
And THANK YOU again to all who have read,
“liked” and shared my essay already.
I’ve been overwhelmed by the comments I’ve received, both publicly and
privately. While it was an
incredibly difficult essay to share, the personal responses have made that
decision very much worth it. Many
friends who do not have a child with PWS have told me that the essay helped
them understand a little better some of the extra challenges our family
faces. And while this is OUR
experience, and I don’t pretend to speak for anyone else, many many parents of
kids with disabilities have thanked me for writing about feelings they’d
thought they alone had experienced at some point. To lessen the burden of even a few people makes this worth it.
Of course, if you know us well or are a regular
reader of my blog, you know too that this essay portrays only a snapshot of our
family’s life and certainly not our whole experience. The theme of the contest was Parenting Through a Challenging Time,
and I struggled a bit with this. Here on my blog I write mostly about the joys
of raising Oscar because, honestly, there are so many joys, and PWS doesn’t
scare me the way it did when I first learned about it. And, importantly, we now have lots of
support in trying times. But when
Oscar was born I was plagued with fear --worried about PWS and what it would
mean for Oscar, for Abe, and for our whole family. I also realized pretty early on, when Abe was rather young,
that he would be grieving at each stage of his development as his understanding
of PWS unfolded. And that is
exactly what is happening. He loves
Oscar and is an amazing big brother – a teacher, a friend, a cheerleader - but
he is also grieving right now.
I did end up reading my essay to Abe when it
was chosen as a semi-finalist. I
just couldn’t share it so publicly until he’d heard it in full and approved. We sat down on that same brown couch together
and I explained that he might find the essay scary. I told him that I trusted that if he ever ever - that day, next week, or in twenty
years -- had questions that he would come talk to me about it. I also assured him that I didn’t feel
this way anymore, but that I wanted him to know that I did once so that he
would perhaps feel less scared by his own thoughts. I watched his face carefully as I read. He laughed at the
black bean reference (those were his words!) and he did tear up a little when I
read about Oscar’s birth. At the end I surveyed his freckled face again,
wondering, worried, knowing it was too late to take back my words. After a moment though he looked up at
me, wiped his eyes, and said, “It’s really good Mom, really good.” And then he added, “And it actually
made me feel better.” I cried a
little then too.
Voting ends April 13th. The finalists
will be announced on April 16th, and the winner will be announced at
the Notes and Words Benefit on April 28th. The prize is excellent -- phone
consultations with an agent, two editors, and introductions to well known
authors (Michael Chabon, Kelly Corrigan, Anne Lamott) and John Hodgman of the
Daily Show. These connections
would be immensely helpful to me in writing my book, but making it to the final
round would also help me raise more
awareness for PWS, and about the challenges that can arise when
parenting a child with a disability and their siblings.
So, if you can, take a moment to read my essay, "like" if you do, and share it in any way you can with those who you think might also appreciate it. Voting ends Friday! Thank you!