Time

Time is a funny thing. We all wish for more or worry over how we use what little we have. Sitting in waiting rooms, recovery rooms, airports with nothing but idle time these past months has forced me to slow down, to reflect and remember my "why". I have never been the kindest to myself but before we ever packed a bag for this surgery I gave myself a gift. The gift of time. Full permission to be selfish with our days together in NY, to not worry over blog updates or fuss over posts on social media. Not because I don’t love this amazing tribe of supporters, I really do. You've pulled me through some hard days. But because A, I'm tired. The pace we've been keeping these past twelve years...we've given our all. And B, I know myself. I’m really good at carrying the heavy load and then tacking on a little more but it always comes at a cost. Typically at the expense of the ones I love. Time is so fleeting, I needed to be fully theirs this trip. 

Surgery wasn't really on our radar at the beginning of this year, but since mid-March we've managed to slap together 3 trips out east. One for appointments and two more for surgeries, our most recent being two weeks ago (July 3rd). The goal was primarily bony work, shaving down and reshaping the overgrowth on Josie's orbital bone. Also accomplished was lifting up Josie’s eye and correcting a droopy lower lid caused by past scar tissue (no more weepy eye). Her doctors centered her nose and raised her mouth. Essentially, Josie had her first face-lift at the ripe old age of 11.

Dr.'s orders, Frozen Peas 

Playing in the PICU Playroom

Besides some itchy eyes after surgery, Josie made it through recovery without any sickness (🎉🎉). She spent one night admitted in the hospital and was released just in time to celebrate the 4th with our friends at Ronald McDonald House (RMH).

After surgery, before swelling set in.
She had sutures under her lower eye all the way to her ear and next to her nose.

Josie’s sweet PICU Nurse (Andrea) that she’s had nearly every surgery
since 2014 and obviously outgrown. Andrea never forgets her💗

The celebration at RMH was actually one of Josie's big motivations for getting through surgery. While I think she probably pushed the envelope on what she should have been doing the day after surgery, who was I to deny her. The New York Police Dept. (NYPD) hosted a huge BBQ at the house complete with homemade knish. To cap our day the PD bused families via police escort (there were 6 bus-loads), blocking off traffic to every cross street down 2nd Avenue to a spot near the Brooklyn Bridge to watch the Macy’s fireworks. It was so funny watching people's faces as our buses passed by, so many stopping to record the moment on their phones. I wonder who they thought might be inside those buses😄

The line of buses near the South Street Seaport

The kids were so excited

While waiting for the fireworks to begin the PD pampered us with snacks and drinks and treated all of us like royalty. I choked back tears so many times that day. None of us expected to enjoy the holiday, let alone celebrate and be celebrated the way that we were. RMH & NYPD (with their families) took what could have been a lemon of a day and made the sweetest lemonade for us and so many others. I will never forget it. 

 During my "idle" time this trip I scribbled out some of Josie's stats over her nearly 12 years of life...

• She's been on the O.R. table 54+ hours during 10 procedures in 3 different NYC hospitals (that's not even counting Iowa hospitals)
• She has lived in the big apple approximately 98 days
• Has seen all 4 seasons in NY, including several holidays (there are actually only 4 months out of the year that she hasn't seen NY)
• She's averaged 1-2 procedures every 18 months since she was 4 years old. The longest break she’s ever had was 20 months. 20 months. Some go half their lives before having one

Going into final appointments with her doctors this past week Dave and I had already made the decision that no matter what was suggested going forward that we were giving ourselves time. A "long" break from surgeries, our hope was 3 years. To our relief, Dr. Waner's thoughts aligned with our own. God-willing, Josie will be 15-16 years old before she ever has to think about another surgery. I don't think I've ever felt lighter walking out of the clinic that day.

 I want to pay homage to our family and friends. For us to be gone for these long stretches of time takes a lot of work and help from those we love on the home front. Time and time again their selflessness, prayers and love have carried us and we'll spend our lifetime indebted to them.

So there you have it, surgery 10 is officially in the books and to say we're feeling relieved would be an understatement. These past months, the last 12 years have felt like a marathon. An emotionally charged, all-consuming, faith-testing, financially-draining, labor-of-love marathon that we didn't train for and would do all over again. That’s life though. Full of unexpected twists and turns. We learn as we go, finding meaning and purpose in the hard places. I wouldn't trade a second of it, but if you need us we'll be enjoying our time in the slow lane. ❤✌