Before Nora was born we were encouraged to get involved with a hospice organization. With everything so completely uncertain, we weren’t sure how long we were going to have her. We wanted to have the resources and support available to help us through what ever was to be. Our efforts led us to Hospice of the Bluegrass, specifically their pediatric division known as Daniel’s Care. My initial misgivings and fear of the word “hospice” were quickly squelched after our first introduction to one another. I never was able to get through the Infant Loss literature or go so far as to plan a funeral (even through I imagined it and tortured myself with that fear over and over again). Then one beautiful spring day, against all odds and statistics we brought a baby girl home who we had named Nora.

We had no idea how long we would get with Nora, but what ever it was we were going to take it, savoring each and every moment. The support and compassion given to us from this team of amazing people was nothing short of a godsend! They supplied Nora’s oxygen supplies (tanks, tubes, concentrator), translated scary medical diagnoses, checked Nora’s heart and lungs every week, prayed with me, cried with me, laughed with me, and even allowed me to get a shower from time to time while they kept an eye on Nora for me. They were never “hospice” in the way that I once imagined — hovering around waiting for imminent death. In fact, they were far from that. They recognized Nora as the little miracle that she is and focused on her sweet LIFE!

This past week on a bittersweet Wednesday morning, I am excited to announce, Nora was officially dismissed from their care because she’s doing so well.

Lisa, Gerri, Billy, Chris, Donovan, and Randy too – thank you for everything. The world is a better place because of you! We are ever so grateful for your your compassion and your love through some harrowing times and for sharing with us in the joyful times too. Thank you!

Saturday (Oct. 19)

All warm and “schnoogy” in her nest ~

“Eenen I waked up!! Good mornings!!

Sunday, I had the opportunity to do some deep cleaning and organizing upstairs. It’s probably safe now to put away the tank tops, shorts and swimsuits (I think?!), and to get rid of the size 3T socks in Greta’s dresser.

Meanwhile, downstairs in the living room :

“Hear dem Bengals growlin,
Meaned n angried,
Here dey comes a prowlin,
Leaned and hungried….
(for milkies?)”

Nora’s Bengals outfit was in the laundry for much of the game, but we did manage to get it on her for the latter part of the game, THANK GOODNESS!!! It’s very important that she has her outfit on. Her Daddy INSISTS!! She’s a really cute good luck charm!!

And so begins another Monday! Breakfast made, beds made, lunches packed, teeth and hair brushed and off to school they go! {Daddy always needs a picture of the kids. He’s at work before they wake and misses them!}

“*SIGH* You gotta be kiddin me. Dey leave me again?!?!”

“Wewl GO ON DEN!!! Have fun at yer schoolz…. Wiffout me…”

And we’re finally all together again at the end of our day.

Tuesday morning! Off to school!

“No commentz.”

“Dis is getting to be like dat movie Groundhog Days around here.”

“I watch for dem wistfully out da window while I help Mommy make apple pie!”

“My Mommy makes me smiled!”

“Yay for 4:00!”

“I lub my sister!!!!”

“Eenen I lub my baffs n my Mom!”

“My brudder is so silly!!! Mommy found dis on her phone.”

Wednesday Nora had an awesome therapy session. She got to play with some pretty sparkly fall leaves…

“What in da heck?!? Is dat my noze?!”

“I’m making a punkin an I got to try da noze on me!!”

“Dat bow is kinda pretty! I kinda like dat!”

“See what I can do?! I’m such a big girl!!!”

“My Mommy is real prouda meee!!!”

“I’m a real big girl an I know how to do big girl tings!”

“I like to listen to musics.”

“My seahorsie sings pretty music!”

Thursday morning the big kids snuck off while Norns was still sleeping, but not before administering some kisses and stealing some sniffs of sweetness to hold them over till 4:00.

It was a dreary overcast morning with intermittent raindrops, but my day was extraordinarily brightened by Kate W. aka “Ellie’s Mom”. We met for coffee at 9:30 and spent the next 4 hours catching up on each other’s lives and “wondering” about God, in the purest most beautiful sense of that word. That time we spent together seemed to have elapsed in 20 minutes. I left feeling energized and renewed, inspired by Kate’s strength and her perspective. The Holy Spirit shines brightly from Kate, despite everything she’s endured.

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
(Romans 8:38-39)

“I tink I’m about to get some lovins!”

“Yeps!”

Friday, Nora and I threw the prospect of a regular old ordinary day to the wind and set off to go visit Nana!

“I gotta getta baff first doe! I’ll keep dis part of da ordinaries!”

Oooh she’s all cleaned and stinky fresh!!!!

It was a beautiful day for a ferry ride!

She knows where she’s going!

Sometimes it’s just nice to get out of the house. Nora had a fun day at Nana & Papa’s house.

She shared some loves with her Nana and even got a surprise visit from Papa on his lunch break!

All this loving makes for a real tired girl. She had a nice afternoon nap in her nest that we brought with us.

We would have liked to stay all day, but we had to get back before 4:00!

“I know what dat means!!!”

No one can LEAVE her alone!

She’s much too sweet!!!