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.

When Sniffles are Actually Just the Sniffles

She's home with the sniffles today, so extra snuggles and play time are in order. Audrey says Cosmo wanted to go to the ball but then he found out only girls were allowed, so he went in disguise.  Silly Cosmo!

Although Cosmo discovered that there are no footballs at royal balls, Audrey did discover that the word B-A-L-L is found inside the names of many sports. She practiced her letters and sounds today with me playing a cute Cosmo version of hangman on the website CosmoCougar.com. She also learned her vowels, which letters are most common in English words, and which letter always comes after an apostrophe.

There's a saying among special needs parents, that with our kids, a cold is not just a cold, the sniffles are not just the sniffles.  So many of us have seen what is "just a cold" turn into hospitalizations and worse. We've been there and done that too, so it is with no small humility I say: What you see is a little girl with actual normal little sniffles.  And this, friends, is huge.

She has had the healthiest winter EVER so far.  She even weathered a one day stomach virus at Disney over winter break when we traveled to Orlando for the first time thanks to a very special gift, spent just one day with extra fatigue and needing a stroller, heaving up saliva once in a while for a couple hours but nothing much beyond what other kids deal with.  Don't worry, we took it very easy that day and were careful not to expose others.  With a large family and traveling with extended family sometimes we have to adapt when things are less than ideal, and she was a sweetheart and mostly watched things from her stroller that day snuggling with her blankie or in our arms. And then after an early night's sleep she got her energy back, moved on  with the vacation and had a marvelous time.  It's the first time we've gone on a long airplane trip without bringing a stroller, and her strength and sparkling energy were absolutely inspiring to me. Without her recent surgery, particularly the posterior tracheopexy and the work on her lungs, we'd probably be singing a different song. Feeling thankful in innumerable ways.

Having a blast in bustling Hogsmeade 
at Universal Studios

I've always wanted to see this
lit up for Christmas.
It was just as magical as I'd
imagined.

Ready to ride the Hogwarts Express!

 
 All set for their surprise morning flight to Disneyworld!

On the shuttle to head back for a break and go swimming!

Annnnnnnnd back to reality.  But full of cozy memories!

Picture a Christmas

So many beautiful things happened this weekend, I'm determined even a work filled Monday that started out with finding Audrey's detached extension lying in a pool of milk beside her bed--milk that should have been in her belly--will not ruin the warmth in my heart.

Just one example: Came home last night from singing at a fireside performance to this sweet sight. They've been having little sleepovers lately, and even when I have to hush their conspiratorial giggles long after bedtime, I can't help smiling through my stern mom voice.  

Audrey was a shepherd in a little Christmas production at church.

"Picture a stable in Judea.

Picture a sacred, silent night.

And can you hear The angels near

And see the star so bright?

Picture the kind and gentle Joseph.

Picture the mother, Mary, fair.

And can you see So rev'rently

The shepherds kneeling there?

Picture the little baby Jesus.

Think of his life and words so dear.

Sing praise to him; Remember him,

As you picture Christmas this year."

Words and music: Patricia Kelsey Graham, (c) 1983 IRI

We visited the beautiful Temple Square Christmas lights display and saw this gorgeous tree inside the Joseph Smith Memorial Building.  We focused on serving and helping others this season, and it lent a beautiful spirit to the holiday.  So much beauty around us in so many ways, and so much to be thankful for this Christmas.

Autumn Gold

Playtime after church on a gorgeous autumn day

My tooth is wiggly!

First Day of Kindergarten!

The art critic in me swooned when I saw Audrey's elegant-lined mermaid from a painting birthday party. They'd told her to paint what she loves, and the first thing she painted was me all in red and yellow and purple, and then she painted a mermaid.

Star of the Week at kindergarten

                                                                After school treat at the Sip N Spot!

School Picture Day

Blue Pancake Day, aka the BYU Homecoming Parade!

Hiking Y Mountain to help light it for Homecoming!!

Surveying the vistas!

Audrey lost her first tooth!  Tooth Fairy brought her a princess dress for her baby doll.

It had been wiggly for a couple of weeks,and when it finally came out she said, "That tooth was in my mouth for like a million years!" 

Tooth Fairy runs on a fairly unorthodox schedule around our house, but when she finally comes, she sure brings the smiles.  

Fun at the Harvest Festivals

This turkey leg was almost as big as her head!
Smiling so wide to see her eat this difficult food with ease.

Feeling proud after: "Mom, this rope bridge is really hard but I'm not giving up!"

                      The "Miracle Happy Dress" by Audrey
"This is Audrey. Audrey loves miracles.  She has a miracle dress.  On her dress is a picture of her cliff diving and riding in a boat made out of a trash can.  She's one of the best jumpers in the world.  She has some training.  Her dress also has smiley faces because they make her happy, and potion curls to help kids who are sick get better."

Trick or Treating on Halloween
 at Daddy's Work

  

In the same dress big sister wore many years ago at her uncle's wedding.

 Thank you so much for the package with the pretty tutu, hair flower and running bib, Valerie!  Val lives in Washington state and runs in honor Audrey with the IRUN4Michael program, where kids with big medical challenges provide motivation and runners dedicate their miles to a child.  She is a total sweetheart who has overcome huge hurdles in her own life, and we hope to meet her in person some day.

 She loved her surprise date with me to watch the high school's production of The Little Mermaid and have pizza lunch, now ready for parent teacher conference dressed in gold from head to toe and all around and in her heart.

 Fun on Thanksgiving Day at Grandma's House!