Just Around the Corner...

"And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it."-Roald Dahl

For months I have been wanting to share with you the crazy twists, turns and full circle moments life has handed us this past year. I have sat down numerous times to begin posts only to get frustrated and delete them. It's hard to condense all the emotions and experiences down into words. Call it the perfectionist in me or perhaps its just been God's way of telling me "not yet".

While I may have been suffering a case of writers block these past months, my heart has been open to the whispers that have been sent my way. I call them God whispers, those little taps on the head that we get that we sometimes brush off as coincidence or flat-out ignore because maybe we just don't know what to do with them. Lately the whispers have become louder and clearer and repeated. As I was listening to a podcast interview with Tim Storey yesterday, his message made me stop what I was doing and take notes.

In the interview Mr. Storey was talking about how life is full of "just around the corner" moments. That there are those known corners that we travel around everyday; our journeys to work, home, and our general daily routines, but there are also those unknown corners. The places and spaces that the Divine takes us into that we could have never imagined for ourselves. Some of those unknown corners deliver us packages that we don't necessarily want to sign for; case and point, Josie winning the genetic lottery and being born with an ultra-rare chromosomal mutation. But, as I'm learning first hand, if we trust in Him and shift our perspective from "why is this happening TO me?" to "why is this happening FOR me?" we begin to see how our "just around the corner moments" are truly being divinely lead and peace and contentment begin to enter in.
  

As I listened to the interview my thoughts instantly went to our FIL journey. A year ago Dave and I were in the thick of the wait for Josie's transplanted nerve to begin working. I was sick with worry and anxiety for what had not happened yet and for what was still to come when and if it did. Outwardly I tried to appear faithful and unmoved, but inwardly I was falling apart. Like all good spouses, Dave suffered the brunt of my meltdowns. 

Linda and Alexandra

Ironically, around that same time I connected with another FIL mom from across the pond in Norway. Linda was searching for answers for her infant daughter and I was unknowingly searching for a friend that could genuinely say "me too". Within the same day of our meeting (online), a private FIL Facebook group was born. What started out as a small group of four FIL moms has quickly grown into an extended FIL family of 45 individuals from across the globe, 22 of which are children or adults living with this ultra rare condition. Linda has also lead the way in establishing a website for our FIL community that launched earlier this year called WonderFIL Smiles all the while fighting battles in her own journey that resemble a modern day David and Goliath. Where I fear I may have crumbled in her position, she has stood with fierce determination. Although we have never actually met in person (yet) she has become someone I admire very much, a dear friend, and a kindred spirit.

My next moment came last June. Josie's nerve had recently started "zinging" and we were in the midst of chaos trying to make arrangements for her upcoming surgery. It was actually in my blog update to all of you where I first turned the corner. There was a comment left under "Houston, we have Zinging!" from a 22 year old recently FIL-diagnosed woman named Wilma.

Wilma grew up in Holland and had gone her entire life without a diagnosis; no text books to refer to, no way to know what's "normal" and what is not. A lifetime of doctors guessing, I can't even begin to imagine how isolating and frustrating that must have been for her and her family. Despite the set-backs she has been dealt, I learned quickly that Wilma is a highly talented, motivated, and brilliant person. She is truly living and embracing her life. She and her fiancé Koen have recently been working abroad here, on the east coast. During her time in the U.S. she has made it a point to meet as many of our FIL family as possible, Josie included! A few weekends ago Brooks, Josie and myself made a trip to Kansas City to meet Wilma and Koen. I cannot begin to express the range of emotions that came over me in meeting them. We truly have gained family in this FIL journey in every sense of the word. On the drive home that day, I couldn't help but sense that we are approaching another corner.

Below is a video of our day together, a be•you•tiFIL keepsake courtesy of Wilma...

This past year has been a year of ah-ha moments, full-circle realizations, and so much personal growth and I’m only tipping the iceberg. While I am still very much a "masterpiece in progress" (another Tim Storey quote), I have witnessed firsthand that God’s plan is perfect. I have worried, cried and asked why me/why her? so many times this past decade only to have Him stay steadfast by my side. Me, this undeserving, poor excuse for a believer, and yet he stayed. This year has been filled with beautiful, unknown corners for us. Overflowing with blessings that we could have never imagined for ourselves and that I know I don't deserve. I have also come to realize that this journey isn't just about us, it reaches far beyond ourselves. Moving forward I hope that I am quicker to look for the lessons in my unknown corners, that I fear them less and embrace them more. For we never can know what's just around the corner.

Last but definitely not least, it wouldn't be a proper post without sharing Josie’s progress! We are nearing the 8-month anniversary of the gracilis free-flap procedure and the 6-month anniversary of Josie's new facial movement. Our family spent spring break in Madison, Wisconsin visiting Josie's Occupational Therapist, Ms Jackie Diels. Jackie has been working with Josie to give her new facial movements purpose and oh is she making progress!

Smile Progress from November (left) to March (right) (photo credit Jackie Diels, Facial Retraining)

Pucker Progress from November (left) to March (right) (photo credit Jackie Diels, Facial Retraining)

Our timeline for future surgeries is uncertain but we do know that it will include a surgery to correct Josie's jaw and prepare her mouth for braces. In the immediate future we will likely be making a trip to visit her surgeons for a check-up, continuing therapy with Ms. Jackie and of course enjoying the quiet break we're in.