Wednesday, August 18, 2010


Hello out there! I took an unintended four month break from this blog and don't know where to start. Four months is a long time.  So much happened...and yet everything is the same. Here's what I wrote last week, on the eve of our vacation:

I'm packing for our annual big trip east, stuffing way more shorts, tees and hoodies into my suitcase than I really need, and reflecting on the summer thus far. It's not gone exactly like I planned.

For one, I've completely neglected this blog and writing in general which has left me feeling rather unmoored and completely disconnected from my special needs community. I've compensated by overloading a few "typical" friends with all sorts of "life sucks" anecdotes. They're patient but I'm sure it's getting old.

The sucky stuff has had mostly to do with medical appointments, IEPs, and associated boatloads of paperwork, emails and phone calls. I also scheduled too many therapies and activities (all important ones) with too little time for transition so that too many days I found myself careening around tight corners on my way up and over the steep hill to warmer climes where the kids swim, only to find that the last spot in the pool's teeny tiny parking lot had just been taken. Swearing under my breath (or sometimes not), I'd push a whiny and clingy Ruby out of the car into the arms of the ever responsible Abe so that she'd make it to swim team practice on time. Oscar and I would then park the car down the narrow windy road and hike back up. I had to keep my hand twisted around his swimshirt collar to keep him from straying into the middle of the road because he's been in one of those phases where he's checking his watch every five - I kid you not - seconds so that twice he almost gone flattened by a speeding car even as I screamed at him to stop checking the damn watch. As we reached the pool I'd glance resentfully at the never used disabled parking spots and berate myself twice -- once for never inquiring about getting a blue placard and another for even having the nerve to think we should qualify.

Now there have been some incredible times as well. Like Abe's baseball team winning their very first tournament in four seasons. For reasons completely inexplicable to me (given my non-sports upbringing and never before interest in baseball) I get completely consumed by this team. I think it's an island of sanity in the sea of craziness. I let my worries slip away at baseball games, and I swear, for five months of the year, it saves me. One family said they'd never seen as pure a smile on their son's face as in those moments following that big win. I saw the same smile on Abe's face...and wonder too what mine looked like.

And Oscar learned to ride a bike without training wheels. Really learned. Gears, brakes, kick starts, up hills and down, ride-around-town-with-confidence learned. This is high on the list of things I never thought he'd do when we first digested PWS, and to think that now we might be able to ride bikes to school, or rent them at the beach and ride as a family...well, this just floors me.

Ruby learned to both swim and ride a bike. (She wasn't about to let Oscar outdo her). And she's starting to spell words on her own, which is fascinating. I don't remember her first spoken word, but I'll always remember her first written one: BTRFLI. Her lengthening legs and interest in spelling and playdates remind me that kindergarten is only a few weeks away.

And, yet, even with all these wonderful moments, I still feel resentful at times. It would be dishonest to say otherwise. I'm tired of the incessant coordinating and scaffolding it takes to keep a kid like Oscar going. (And now Ruby's been seeing an occupational therapist too, so we have more exercises and home programs to follow.) I know I should be grateful and I really truly am...but right now the resentment is eating me and my usual gratefulness right up. I'm snippy and short and distracted and really no fun to be around.

Something has to change, and I think it has to be me.  PWS is not going away, and, thankfully, neither is Oscar. He has a dream team of people working with him privately and at school. He himself is motivated and fun, two traits I'll never take for granted. The IEP and the school stuff will sort itself out. I just have to make sure it doesn't overtake me first.

What I need is a shift in thinking. If I could mentally pack up the unsavory parts of our life and put them temporarily aside so that my mind was free to appreciate all that is working so well, I'd probably be a whole lot less irritable. If I could open that suitcase only when I needed (say, when the lawyer is on the phone advising me about "stay put" and "10 day notice" letters) and then zip it right back up again I think I'd be a whole lot happier.

This is what came to me as I overstuffed my suitcase with books and clothes for our trip east. I think I will pack another bag -- a bag full of mental crap -- and leave it right here so that vacation might actually be vacation.


  1. I'm so excited to see your blog at the top of my blogroll, indicating a new post! Yay! I'm happy to be caught up on all the goings on in your family and sorry that you're struggling. I'm wondering whether you've ever taken a mindfulness meditation class for stress. When you describe yourself in this post, you have a lot of "shoulds" and "woulds" and all kinds of judgments about yourself -- I know what that's like, and I understand that you want things to change. Without going on and on and sounding like I know what I'm talking about, I'd just finish by encouraging you to read something serious about mindfulness meditation -- it has been incredibly helpful to me!

    And I hope you're around for a while to blog and tell us about your remarkable children!

  2. And please remove all the exclamation marks! I sound ridiculous!

  3. You are so right Elizabeth - I need to read about mindfulness meditation! I've been interviewing friends who do it and it is sinking into my stubborn cluttered brain that meditation might really help.

    (I liked your exclamation points)

  4. Welcome back. Congratulations on all the achievements of the summer. I'm sorry you are feeling low. Mindfulness has also helped me - but whether you choose that or not, what you are feeling is completely normal. Keep writing and keep in touch, that might help too.

    and feel free to email me anytime if you need a dumping ground

  5. What a great idea that suitcase is!
    I can only say that your honesty and your obvious love for your family both give me encouragement. Thank you for writing your thoughts and feelings and sharing them here.