That's a Wrap - 2013

Some of Team Bailey for the Rally Foundation - Atlanta 13.1
Hugely successful Team Bailey fundraising t-shirt.

Filming back-story for "The Doctors"
This year has been completely amazing. As I look back to where we were exactly 12 months ago, life seems to be moving at warp speed. Last December, Bailey had only been off chemo and on her prosthesis for just a few short months. Her hair was starting to grow back and she was still incorporating her new leg into all of her waking hours, adjusting to life as an amputee. We were gloriously joyful, glad to be together and forever changed. We had no idea that because Bailey had made such an unusual choice, that it would lead to amazing opportunities this year, both for her personally and for us as a family. We couldn't know that it would provide us with the chance to be a voice for those who can no longer fight. The year has unfolded with blessings beyond our wildest imaginations. Our little warrior princess who started this journey as a child, is now blossoming into an advocate and public speaker. We have had experiences galore and we do not take them lightly. We approach this responsibility quite seriously and we intend to do all that we can, because in the words of John Piper, we do not want to "waste" Bailey's cancer.

Bailey threw out the first pitch at a Braves game.

Upon review, the specific events of the year are almost unbelievable. In January, the six of us flew to Los Angeles for Bailey's Make-A-Wish trip, a day on the set of her favorite Disney show.  It is one of our most special memories and something we will cherish always. We didn't know it at the time, but this trip was the kickoff for what would be one of the most fun, exciting and busy years of our lives.  I have consistently prayed for opportunities to share our story, but I never imagined there would be this many and that they would come so quickly. Bailey has done countless television interviews. One interview happened to be for the local Fox affiliate that ended up on their national Internet page (much to my surprise, as I discovered it accidentally one day while checking my Fox news app). Over the summer, we hosted a group of backwards-footed girls for what was our first annual RotationplastyPallooza. This was one of my favorite events all year. To see these young ladies together, bonding, sharing information, healing...it was beautiful. My hope is that they can begin to build relationships that will last a lifetime. Personally, I had the wonderful opportunity to meet Ann Voskamp and have a portion of our story shared at our church's women's retreat. I ran my first (and likely last) half-marathon with Team Bailey for the Rally Foundation and as a team we raised over $20,000. We have gotten involved with The Truth 365 and their amazing campaign that uses social media to raise awareness about the realities of childhood cancer. Then we had the chance to be on "The Doctors." It was all simply beyond anything I could have planned. Bailey has also done speaking engagements and videos for both CHOA and Aflac. In the spring of 2012, when we were in the early weeks after her diagnosis and we were sad, fearful and being forced to make agonizing decisions, none of us could have envisioned what would come from her trial and very difficult choice. We were busy trying to make it through each day. And even now we know that this is only a small fraction of the entire picture, there is so much that we cannot see, but we are grateful for even the most brief glimpse behind the curtain.

Bailey speaking at the Aflac "Duckprints" event.
Bailey and Luke with John Smolz and Ernie Johnson, Jr.

And yet, with all of the fun activities, I don't want to paint an unreal picture of life after cancer, because there never truly is an "after." We spent a good bit of time allowing our family to heal, to recover. We tried to be with our other kids and make them feel special - they were neglected for so long. There is so much attention placed on the child with cancer, that the others can feel incredibly left out. Bailey is still monitored every three months to watch for relapse. She will also be forever tested regarding the things that can be long-term consequences of cancer treatment...hearing loss, heart damage, secondary cancers...it is a terrifying list. We are now connected to so many families both in relationship and on social media, that we are "lifers" regardless. We have watched many kids lose their battles over the last twelve months and we know many families who are suffering greatly. Once you are in this cancer world, you are in. Once your eyes have been opened, you can't look away. As a mama who is fully educated in the beast that is osteosarcoma, fear is a very real portion of most days. We know this is God's plan, but we also know that even though He is always good, His plan can look very different from our agenda and that many times there is suffering involved...and so submitting to Him, laying it down...it is not a one time event, but rather an almost daily battle. 

As we wrap up 2013 our overwhelming emotion is gratitude, followed closely by joy. We know that God has been merciful and our thankfulness overflows. We are learning to live in our new normal. We continue to try to figure out how to parent our kids through each of their specific challenges whether it is food allergies, adoption, loss of a limb...none of it is easy. Sometimes even managing the daily and mundane feels more difficult than the big stuff, because the pace is intense and there are so many opportunities for failure. We know we are not enough and that we can only do it through Him who strengthens us. As we approach 2014 our prayer is that we continue to find joy and peace in each day. We want to avoid being lost in busyness and doing, but rather to live with eternal passion and purpose. We pray the same for your family and we thank you for walking with us this year.

"Experience had quickly taught her that she could not survive the storms 
without the anchor of the constraining love of Chirst and what she 
called the 'Rock-consciousness' of the promise given her, 'He goeth before'."
-Elisabeth Elliot, A Chance to Die (The Life and Legacy of Amy Carmichael)

1 comment:

Heather said...

Bailey is so impressive! What an amazing set of opportunities your family has had! My daughter is only 2 and the most she can do is point to her scars and say she's brave. I know exactly what you mean by "not wanting to waste" the cancer. My family is almost one year post-rhabdomyosarcoma now. But I've dived head-long into autism now; my son has it and that went on hold for a long time. Best to you in 2014!