The Power

Abe's not the only sibling struggling right now. Ruby too, in her own way, is coming to grips with PWS, but instead of retreating she's started pick-pick-picking on Oscar.

"Chew with your lips closed!"

"Stop sticking your elbow into me!"

"Hurry up Oscar, it's your turn in the game!"

Honestly, she's noticed my (decidedly more gentle) reminders and is imitating me with an added punch.  I'm working with her on just taking care of herself and not worrying about Oscar, but that's not in her nature.  She's highly attuned to her environment and just can't turn off the noticing.

Last night at dinner was no different. We were at our very favorite Mexican restaurant and the three kids were squeezed together on the bench side of the table. Ruby balked at having to sit in the middle and took out her frustration on Oscar.  Elbows! Lips! Stop squishing me!

Instead of reprimanding Ruby again I decided instead to compliment Oscar.  "O-man", I said, "I want to honor you for putting up with all this criticism day after day and not letting it phase you one bit".

I reached across the table to give him a fist bump. He returned the bump with a triumphant smile and said, so eloquently,

"Mom, I have two choices in these situations.  I can ignore her, or I can walk away.  When I do either of those two things the power bounces back to me."

"WOW", I said. "Where'd you learn that?" hoping it was something I'd said in some moment of brilliance that I'd clearly forgotten.

Nope - it was one of his amazing teachers. Of course.

More Thoughts on My Essay

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 

If 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 13^th. The finalists will be announced on April 16^th, 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!

Costa Rica

We’re in Costa Rica with Paul's family this week, visiting my sister-in-law who is living in Monteverde with her daughter while on sabbatical.  While all of us were excited to get here, Oscar was especially ecstatic about this trip.  As a little guy he was obsessed with rainforests and has been begging for years to visit one.  I reminded him yesterday that his preschool teacher turned the classroom’s play kitchen area into a rainforest on his behalf. (He doesn’t know this was also because otherwise he would have spent the entire school day in the kitchen, making plates full of plastic fruit mixed with all sorts of forbidden foods like pink frosted donuts, three layer chocolate cakes, and miniature fake fries.)

Oscar’s been so engaged and energetic here in the rainforest.  He’s the first one to volunteer for any walk – to Quaker Meeting, a mile up the big hill to breakfast, an extra two mile loop in the local reserve.  On Sunday he hiked the steep, rocky, and, at times, slippery trail to the impressive San Luis waterfall.  He hikes slowly in the back of the group with whichever adults feel like strolling, while the other kids race ahead, bounding up hills and leaping across makeshift bridges. Oscar doesn’t leap or bound, but he does just keep on going without complaint.  When we got to the waterfall he happily squatted on a damp rock overlooking the deep pool and watched his dad, cousin and brother jump from the face of the rock into the water right next to the misty fall.  I don’t think he ever thinks about wishing he could follow in their footsteps, but sometimes I do.  Not for my sake, but for his.  What would it be like for him to be out there jumping too?  What would his dogged determination look like in a body that complied? Or, I often wonder, are his determination and positive attitude also a result of learning to persevere through the challenges that PWS presents?  I’ll never know of course.

On Monday we went to Selvatura, a nearby adventure and wildlife park.  Oscar insisted on visiting every exhibit - he toured the reptile house, saw the hummingbirds, and visited the butterflies and insects.  And, amazingly, he agreed to a ziplining tour through the rain forest. I didn't know, and neither did he, that it would be thirteen ziplines through the rainforest canopy that would take 2.5 hours to complete.  I had chosen the hanging bridges walk instead but arrived at the last platform in time to wait for Oscar and the rest of our crew to complete the last zip. I stood there waiting, pacing, hoping he'd had fun. Hoping it wasn't too strenuous or stressful. Hoping we hadn't stretched him too far.  Hoping he and Paul hadn't had to hike back on the trails instead.  I looked out across the valley in search of the starting platform but it was hidden among the trees over one kilometer away. Another family was waiting too, and we took turns checking the cables for vibration, our only sign that they were on their way. When Oscar finally zipped in to the platform he was waving and beaming.  “Mom, mom it was so cool -- we were so high up in the trees!"

Here he is mid zip. (I was relieved to learn he did every zip with a guide).

And here he is beaming. (You can't see me, but I'm beaming too)