On Eating Whatever & Whenever

We just complete a FIRST in the Patay Family.

We had our very First Family Vacation Without Ryan.

Without PWS.

Without a schedule.

Without a food schedule.

Without 1000 questions per day.

Without “what’s next ?” and “what if…?” and all his bless-ed anxiety.

And it was weird and surreal and calmer and easier, and yet not having him with us was a little palpable.

We were giddy sometimes with all the food freedom.  We ate or didn’t eat.  We ate whatever we wanted.

We ordered room service snacks at 4:30 in the afternoon.  We skipped lunch at the Santa Cruz Boardwalk and ate ice cream instead.  I didn’t pack healthy snacks and low-calorie kid drinks.  I packed nothing for us, in fact.

Irony struck, though, at the beginning of our trip.  Three of us got the volcano stomach flu.  And then had the residual I’m-afraid-to-eat-phase which can last a day or so.  What a buzz-kill to our “food holiday” as we call in the PWS World.

Oh—and by the way, we didn’t leave Ryan behind with a sitter, pining away for his family.  Ryan was happily (ecstatic really) at Camp Harmon.  A 5-night stay at a structured and food-scheduled-and-locked-away camp for children and adults with Prader-Willi syndrome.  All thanks to the Prader-Willi California Foundation (PWCF) who provided this at a low cost to us families.  All counselors were trained and ready for the little social bugs who love food a little too much.

RESPITE.  A word most PWS families do not know intimately.  

But this camp provided a break for moms, dads, families, and group home staffs.

Respite is imperative for those who care for loved ones or residents with PWS.  (Or anyone with special needs and circumstances, for that matter.)  Multiply your need for a mommy break times a THOUSAND, and well, you get what I mean.

So back to the First Family Vacay minus sweet Ryan.  We were giddy—but then we felt a weensy bit guilt-ridden, too.  Both Luke and Kate expressed spectrum feelings of relief, the “easy-ness” of traveling without the restrictions and limitations related to Ryan.  Then they shared feeling pangs of guilt.  Chris and I made sure to listen and validate.  We shared our own feelings which fully reflected theirs.

And honestly, we fantasized about June of 2015, and played the “where shall we go next?” game.

So as not to over romanticize this whole NorCal trip for the benefit of sounding like it was so PERFECT and IDYLLIC without Ryan, we still dealt with over-tired, grumpy children who had to engage in stinky sibling stuff, just to keep us on our toes.

Ryan was so enamored with the whole idea of his “own sleep-away camp” that he had no space for fear or sadness.  He barely said goodbye until we forced it (lovingly), and snapped a few pics.

I walked away from his cabin sucking in the tears.  He was genuinely happy.  He would be ok.  And by the end of that first day, I was, too.

Reuniting Day fell 5 days later.  We braced for re-entry into full family time and the world of PWS.  Respite was over.  Schedules back on.  Food controls implemented yet again.  Food freedom made me a little bloated, tired, and puffy, anyways…the grass is clover green over there but sheesh.  I couldn’t wait to see his face, hear his first-time-camp stories, and hug his skinny crooked body.  I made sure that Ryan gave me a “real hug,” with both arms squeezing me.

With Ryan come many blessings and lessons and sometimes even unexpected perks.  As we drove the long drive home to Palos Verdes, we for pulled over for speeding.  Chris didn’t even realize he was speeding on the two lane deserted highway.  The cop pulled us over and I rolled down my window.  I knew….here come the questions and possible panic from Ryan. As we did the usual hand-overs of insurance, license and registration, Ryan fired the anxious questions from the middle seat of our cool minivan.  It was his first experience with a policeman pulling us over. Not that it happens often… 🙂

And guess what?  The policeman had mercy on us and let us GO without a ticket.  He even smiled at us as he said to “slow down and be careful out there.”   Thank you Ryan, for scaring off the cop and saving us hundreds of dollars and headaches.

Once again, I am grateful for this child.