This blog maps the medical journey of Josie Grace, a brave young lady born with an ultra-rare craniofacial condition called Facial Infused Lipomatosis (or Facial Infiltrating Lipomatosis (FIL)). Our story honors all the beautiful "rare birds" that have journeyed before us and to those little ones who are yet to be. Perhaps our scars can be someone else's hope...
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Perspective
Today marks the 17th night that we've spent in the Big Apple. Five days ago if I had wrote this post I probably would have complained about the rude people, the annoying tourists, the crowded/stinky/hot/filthy subways, the price of groceries (I swear to you I saw a whole, uncut pineapple in the grocery store the other day selling for $9) and how we have been in this hotel long enough to watch enviously as countless others check-in and then get to check-out for home.
Telling her flock good-bye
Today, well today my perspective has shifted northward. This past week with only Josie and my thoughts, I have had so much time to just be and to reflect (and to sleep). Today as Josie and I sat in the park feeding the birds for the umpteenth time, I realized how truly happy and light I feel. It's been so long since I've been able to say that. The weight of all the fear, anxiety and stress is lifting and I pray that when we have to cross this bridge again that I'll be able to handle it with a little more grace and a lot more faith. For those that tell me how strong I am, I'm not. I fake it every single time for my kids. They are and always have been the strong ones, the brave ones. Kids can't fake that.
Halloween 2016
Yesterday Josie and I took a train to Jersey to meet up with two very close friends, Erin and Fred (and their new little guy, Grayson). I have been friends with Erin since college, Fred was adopted into our clique about 14 years ago. The two of them somehow managed to give two very homesick gals the best day and company that they could never have imagined. Fred has one of the biggest, most genuine hearts and happens to be a pilot. Last Halloween Josie dressed up as one of her favorites, the Statue of Liberty. When Fred saw her picture on Facebook last year he messaged me to say that he'd love to fly her around Lady Liberty one of our trips out here. Well fast forward to Sunday and Fred did just that. He and Erin made Josie (and I) feel so special and so loved. It was one of those days that we'll never forget, not only for the adventure but because they literally picked us up out of a homesick slump and gave us all the little bits of home that we needed, right when we needed them. God sure has a way with timing.
Fred's co-pilot for the day, Goose
Goose
Fred may have given her a new ambition
Her Smile in this picture is Everything
Erin & cool Mr. Grayson
She was glued to the window
Goosebumps
Hunting for Shells near Barnegat Lighthouse (Long Beach Island)
Waiting at the train station at the end of the day, deliriously happy
When the day had ended and we had to say our good-byes Josie and I chattered and looked through pictures the entire train ride back to the city. My favorite Josie quotes from yesterday were "my face hurts from smiling so much today" and "see mom, this (today) is why it's okay to have surgeries sometimes." She has it all figured out.💗
We met with Dr. O and Dr. Waner one last time today. It was about an hour+ of strictly one-on-one time with our beloved doctors. So much came from today's visit, when I left the clinic I was buzzing with excitement for the conversations had and all the possibilities for the future. Once I've had some time to process everything and get more details, I'll be sure to post. In the meantime, expect a break from this lady. I'm so ready to be home! Tomorrow marks the end of our 10th trip, our 8th surgery & recovery (in NYC) and the beginning of innumerable smiles for years and years to come! I think that's an excellent note to take a break on.
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