May (Really?)

I looked at the calendar just now, and was shocked to see it was May 11th.  I mean, on some level I know it's May, but you could have convinced me it was still March.  Not writing - not whipping out a quick blog post, or taking a moment to scribble a few notes on a post-it - seems to make time speed by even faster.  Memories blur and are then lost. Suddenly we are in May.

On those rare days when I do pause, even just for a minute, to jot down a few words about the proud look on Oscar's face when he tells me he was invited to the movies, or Ruby's sweet giggle when I offer to push her baby stroller, our crazy-paced life slows for a second. Writing allows me to gather and relish memories that we can then carry forward with us as life's pace picks back up.  I have trouble remembering this.  I am going to keep trying.

Here are the things I didn't write about this month:

Oscar choked on a hot dog at a baseball game and I had to do the Heimlich.  Very scary, especially when the water I had him drink (bad idea, don't do this) gurgled and then ran down his chin while he stood there, frozen, his eyes fixed on me.  This incident was a blatant reminder that all the choking warnings with PWS are true. I realized too that it's not only the rushing to consume unauthorized food that leads to choking in PWS, but the lack of muscle tone to cough or encourage food to come back up.  It was four weeks ago now.  He's ok.  I'm still shaken.

On that same night I found out my essay was not chosen as a finalist in the Children's Hospital Notes and Words contest.  I was not surprised -- I didn't have as many votes as the lead essays and it would have been a difficult essay to showcase.  And yet of course I was disappointed.  Over the past few weeks I've continued to hear from people about how deeply they were affected by it and this is spurring me on to write. 

I am writing, a tiny bit, with a writing group I just joined. We sit in someone's living room - today it was mine - and write to prompts for random amounts of time over two hours. Five minutes, twelve minutes, or longer when I forget to set the timer.  And then we read what we wrote. No commenting, which I find so difficult because the writing is beautiful and I want to say that. It's fun and it's hard and it's exactly what I should be doing. 

What I am also doing, but don't want to be doing, is dealing with Oscar's IEP.  We had his triennial IEP meeting back in December and I finally signed that document last Monday, the morning of his 3.5 hour transition to middle school IEP meeting.  I don't write much about his IEPs here because I don't want to discuss anything that is deemed confidential or could in any way hurt his case.  I can say that I truly believe that everyone sitting around the table - all 16 of us - wants what's best for Oscar.  But the law doesn't mandate "best", it only mandates "appropriate".  And so I spend a lot of time documenting what constitutes appropriate for Oscar.  I'm hopeful that we will come to some agreement on the appropriate placement (which in my opinion is also the one I consider to be the best) but sadly it won't be without many many more meetings. 

Meanwhile the school year is rushing to a close and I am thinking daily about the ending of Oscar's elementary years in that sweet and supportive school. I will be writing about that a lot here, plus our amazing Walk for PWS last week, and my friend and teacher Kate Hopper's newly released book Use Your Words: A Writing Guide for Mothers.  So exciting!

I won't let these extraordinary moments pass without getting them on paper, but I may have to use those post-its (or the back of my hand) as a temporary measure till I can transfer the words here.