Thursday, April 28, 2016


Today you are 10 years old, my darling Lola. I can barely wrap my mind around the fact that you have graced this earth with your sassy presence for a decade now.  How can that be?  Is it that whole time warp thing I have discussed many times before?  Is it true what people say about time passing so slowly when you're young and then as you grow up, it flies by in the blink of an eye? Not even gonna admit that time has flown by because I am old, because I'm still super young and spry, right?  (Dadgummit, who uses the word "spry" anymore?!  If you answered "the elderly," imma fixin' to tar & feather ya'.  Hell's bells!)


Ten fingers and ten toes that I didn't even count the day you were born.  Somehow, it seemed so unimportant.  All that mattered was that you were here and breathing and alive.  I cannot tell you how frightened I was the day my water broke, one month before your due date.  All I'd heard your entire pregnancy was that no one knew what the future held.  They weren't sure if you'd be similar to Claire or different.  They weren't sure if you would survive the birth or have major complications. I was asked to answer questions that I was not ready to have to answer about resuscitating you, intubating you, and saving your life.  The answer was always YES, Lola.  Please do all you can, just as you would if she were "typical," I told the doctors.  I hated that word -- "typical" -- because you and your sister were anything BUT typical, and the opposite felt so negative, harsh and unknown.  I prayed every single night for you, sweet girl.  I cried and bargained with all Higher Powers to shave years off of my own life if they'd spare yours. 


Ten sonograms.  Ten chances to see you before your birth.  Ten reassurances that you were still alive and stable.  Ten opportunities to fall in love with you even more.  Ten times I prayed that somehow, miraculously, you'd be healed.

Ten sonograms = The number of sonograms necessary for me to realize that you didn't need healing.

You were already everything I had hoped and prayed for.  Your tiny, malformed brain would not define your life or determine your worth.  You were here to experience life just as you were.  The only person who needed to change was ME.  


Ten perfect birthdays that we celebrated on your behalf.  Ten special days I wasn't sure I'd get with you just ten years ago.  It is mindblowing all we have been through over the course of the last decade.  Choosing the pictures below really took me back.  It allowed me to remember and sit for awhile with each passing year.  Oh, we have come SO FAR, baby girl.  You have proven time and again that you want to be here.  Thank you so very much for choosing to stay.

Unicorn crown from Nova Sky's Co.
A huge thank you to Fatima Lee for sending this beautiful crown to our sweet, magical Unicorn Princess.
(And one to Claire, also!)

A peek back through the past ten years...


The day of your birth... You were -- and still are -- so perfect, Lola.


This picture reduced me to tears immediately upon seeing it.  I am 100% convinced that the siblings of individuals with special needs are some of the most incredible, considerate, compassionate, loving people on the planet.  Cal has always been everything his little sisters needed.  From the day both of them were born, he loved them unconditionally as only their big brother could.  His ability to see past differences, accept people for who they are, and love with his whole heart has inspired me more than he could ever know.  I could never have survived Lola's diagnosis without his wisdom.  I am so honored to be called "Mom" by these three children of mine.

Possibly my favorite baby picture of Lola EVER!  This is what she thought of therapy toys back in '07!


Notice Cal trying to help Lola blow out her candles?

Birthday Princess!


All the cousins!





Post chicken pox.
These pictures were hard to see.  She was SO. THIN.  Notice she is wearing the same dress as in the top picture above, but she literally swam in it.  It is a 6-12 month size (thanks, Jessica!), and at age 7 above, she had lost so much weight due to being ill that she could barely wear that size.  Heartbreaking to see where she was, but we are so grateful for the progress that has been made the past three years!  Lola is seriously the strongest person I have ever known.




Drop that knife, OJ Mrs. Pocket!!!


Lola, Kerby, Cal & Claire  ~  Prom 2016


Ten times I kissed you, through tears, just now after reading you this post.  Ten tears streaming down my cheeks.  Ten "I love you's."  Ten seconds of eye contact after telling you that you are the most perfect third child I could have ever asked for in this life, just as you are.  

Happy 10th Birthday, Mrs. Pocket.  I love you to the moon ten times and back.


Sunday, April 10, 2016

Feel Better Friends

This past week, we were completely BLOWN AWAY when these Feel Better Friends arrived on our doorstep, courtesy of our new friend, Michele Llamas-White.  She had contacted us months ago and expressed interest in making some FBF for the girls.  I didn't quite know what to expect.  I sent her many pictures of the girls, zooming in on their legs and faces so she could try to replicate them as best as she could.  I also checked out their website & Facebook page to see more examples of what had been made before.  I was completely awestruck by the end results created by these ARTISTS at work!  The intricate details of each doll... the precision... the craftsmanship... the careful consideration for the beauty that comes through differences... WOW.  I am still speechless.

But I was even more speechless when our girls' Feel Better Friends arrived.  I couldn't take my eyes off of them for a good half hour.  I just kept seeing things I'd not seen before.  I kept turning them around, feeling their soft hair, looking closer & closer at how PERFECTLY they were made, and tearing up -- all at the same time.  Check it out... (said in my best Fergie voice... you know you just said it out loud, too.  Don't even lie!)

Shall we call them LoLo & Clara?  Lolita & Clarice?  LeeLee & Mimi?  Jury's still out...

Michele flat-out NAILED IT on Claire's doll.  The darling crossed legs (left over right, baby!), her arm position, her beautiful ears, her most fabulous Halloween costume EVER... it was straight up PERFECTION.  ALL OF IT!

And check out mini-Lola!  CAN I GET A "BOK BOK" FROM EVERYONE WHO SAW FETA FIRST & FOREMOST?!?!??!  I love you, Michele, for including our Bok.  He'd want it that way.  (Though he told me he is jealous he isn't as large, bodacious & colorful as mini-Feta... or should I say MAXI-Feta?!)  I love how the doll's legs are tucked under her.  I love her blue eyes.  I love her birthmark, long, flowy hair and her low forehead.  She is so pretty -- just like my girl!

Notice the little birthmark on her chin?
That's what we love about you, Michele -- your attention to detail!!!
(Fake $5 to the first person who knows what movie that's from!)

#FetaForever   #BokNation   #FetaForPresident   #BokIsLife   #InBokWeTrust   #WWFD   #ICouldGoOnAllDay

"I spy with my little eye the most beautiful girl on the planet!  Wait, that's me!"

"Who wore it better?!  If you guys say the Shorty with the bigger head, somebody's gonna be in a world of hurt."


We want to thank Michele & Feel Better Friends for making this a reality for our girlies!  We simply cannot tell you enough how much we adore these dolls, how fabulously they were made, and how touched we are by Michele's kindness.  

For more information about these beautiful, handmade dolls stuffed with love and well wishes, click on the following links:


Saturday, March 12, 2016

Finding The Light

Growing up and living in Kansas my entire life, I have always loved sunflowers. Since Scott & I have been together, he has often given me sunflower bouquets. They are stunningly gorgeous, unique, brilliant in color, and timeless. In part, sunflowers define what I love about Kansas besides its flowing "amber waves of grain," our green, rolling Flint Hills, and the most breathtaking sunsets EVER which so totally -- hands down -- trump all other sunsets on Planet Earth without question. I love that we're known here in Kansas for this striking flower that eternally faces the sun & follows the light each and every day.

Oh yes, I love sunflowers.  And that is why I was so elated when our girls' teacher, Amy, told me that she'd be doing a sunflower project with the girls to celebrate Kansas Day this year. During the end of January, the girls worked hard several Fridays in a row to create their special painting with Amy's help. How awesome it is to have an art emphasis to help our girls learn!  Amy explained to me her plan for this picture and how the girls would use their hand prints and footprints to create sunflowers on a foot-painted sky and grass background. I couldn't see her vision initially, but I am so glad I was able to watch the picture unfold each week because it was magical!

I will always treasure this one-of-a-kind painting because it represents so much for our family.  It is a reminder of my love for Scott, my girls, my favorite flower, & my state. I see this painting and remember how hard the girls worked on this project to achieve this perfect finished result. I am in awe of their progress this year, and seeing their sunflowers is a physical symbol of all of their accomplishments. Most of all, it embodies the way we try to live our lives. No matter how dark life seems, we continue to find our light and keep our faces to the sun. It isn't always easy, but it's always worth it.

"Sunflowers" by Amy, Claire, Lola & Feta  ~  January 28, 2016

(Ignore Mrs. Pocket's attitude -- my girl was hangry!)

"Hey Chucko, that doesn't smell like mud."
(If you don't know what movie this is from, I'm not sure we can still be friends.  LOL)

Claire seemed to enjoy the feel of hand painting & seeing her finished gang signs hand prints!

Check out those long legs!  Claire is growing so tall!!!
Notice her yellow-fading-to-orange-fading-to-red footprints in the background?  

"Ummmm, are you really gonna stick my foot into that cold paint???  Who do you think I am?!?! Where's my tiara?"
Routine eye roll  ~  #divability

I love the way she is looking at Amy.  So incredible seeing such progress with her vision lately!

Feta could not be excluded... notice the "seeds" in the center of Lola's sunflowers?!
Yep, chicken scratches GALORE.

I see you, Pablo Bokasso!

Look how his little feet are tucked under as he is painting!!!!  I literally can't even.  And I still can't, for the life of me, figure out what the shit that means, but I simply can't.  Even.  Or whatever.  

In its new home!

Lola's flowers are on the left, and Claire's are on the right.  You will notice that the center brown sections of the sunflowers are the girls' hand/fist prints.  The yellow petals are their footprints.  Claire foot-painted the sky, and Lola foot-painted the grass.

What you WON'T see but PLEASE KNOW IT STILL EXISTS (!!!) is a rogue, white paw print located nearly dead center of the picture under a yellow petal.  They say that many great artists hide codes or secret messages in their artwork.  A certain large, white, apparently artsy-fartsy whippet, who had to be part of this project in his own little way, may or may not have galloped across said painting as it was drying after the girls foot-painted the background.  I'm not gonna
name names, but suffice it to say that it rhymes with "brash," "trash," and "gigantic horse's ash."  

Once again, we are SO GRATEFUL to have such awesome teachers & therapists working with our girls!
We could not be luckier to have Amy as part of Team Hooligan!
THANK YOU again, Amy, for one of the most touching gifts we've ever received.

“I don't think there's anything on this planet that more trumpets life than the sunflower.  For me that's because of the reason behind its name.  Not because it looks like the sun but because it follows the sun.  During the course of the day, the head tracks the journey of the sun across the sky.  A satellite dish for sunshine.  Wherever light is, no matter how weak, these flowers will find it.  And that's such an admirable thing.  And such a lesson in life."

~Helen Mirren, from the movie Calendar Girls

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