January 14, 2017

Thank you for your patience with me as I took a break from the blog for a time.  Today Audrey is five years old, post (4th major) surgery nearly a year, and although she still depends on her G tube for nutrition overnight to supplement what her stomach can handle, she does finally eat by mouth very well and weathers colds without hospitalizations.  She is vibrant and happy and active and healthy and home.  She attends public kindergarten and plays with friends and can do virtually everything they do.  We have countless people to thank for her amazing progress, and we thank all of you from the bottom of our hearts.  January is EA/TEF Awareness month, and I hope our story can help other families to have courage and hope.  Every EA child's journey is unique, and ours has certainly been an adventure. Thank you for encouraging us every step of the way.

(The following exchange happened November 18, 2016)

Me to Audrey while brushing her hair this morning:

"Who's a pretty girl?"

"Me"

"Never forget it."

"Who's a kind girl?"

"Me"

"Never forget it."

"Who's a strong and brave girl?"

"Me"

"Never forget it."

"Who's a girl mommy loves lots and lots?"

"Me"

"Never forget it."

"Who's a girl that Heavenly Father loves?"

"Me"

"Never forget it."

I finish brushing and she turns towards me and says,

"Who do I love lots and lots and love to hug and kiss?"

"Me"

She hugged me tightly and said, "Never forget it."

I wrote this on my facebook wall this weekend:

For the January breast cancer awareness social media push, instead of joining in the vague posting game, I finally went and got my first mammogram (a process that literally took under fifteen minutes including changing). I'm thankful that the cute awareness campaigns are out there, but I felt the need to do something more to spread the word more publicly than putting a heart on my wall. I am thankful for early detection saving the life of my beloved friend Yasko, as well as deeply sorrowful about my aunt Barbara and friend Anna I've lost to this disease, and my best friend Julie who lost her battle with a different cancer in 2009. I love their families and I mourn with them. I hope to see the cure for of all cancer in our lifetimes.

Similarly, in honor of EA/TEF awareness month, I've spent the bulk of the past two days cloistered at my computer updating Audrey's blog with close to 75 posts from the past three years of her medical battle against this fairly little known birth defect, a task I've put off for a number of reasons beyond the obvious time investment. It's emotional work, and a bit different than the comfort zone of sharing her journey with friends and family here on Facebook. The composing program on Google Blogger is also full of frustrating bugs, so at least half that time was spent wrestling the photo layout and making corrections in HTML, but I finally feel close to completion. For a while during the project I was so grumpy and frustrated, but my husband and family were so patient with me; I really want to thank them publicly. I left my phone upstairs on the charger all day yesterday, didn't check calls or messages, and took a screen break for several hours in the afternoon watching my little kids swim at a fun birthday party. Thank you Justin for a thousand kindnesses while I tackled this overdue project. I hope it can help EA/TEF families and spread awareness (more than fear), and I hope that when we print it into a book for home archiving, the end result will be something our family will always treasure.

Cancer and EA/TEF have brought so much sorrow and challenge and change to my life, have cost so much time and stress and other things I can never reclaim, but I have to admit that the ways they have changed me personally have made me a more compassionate person. More chill on the small stuff, more grateful in the mundane tasks of motherhood, more aware of others' feelings and the precious time with loved ones, more inclined to apologize quickly and much less inclined to take offense or care about petty things. If I could, I would eradicate these cursed diseases from the world, and if I could, I would wish every person on earth the perspective they have brought me. Wishing everyone a day full of love and opportunities to change the world a little bit for the better.