Tuesday, June 30, 2015

Life and Joy

Little One,

I remember the night you were born. You fought stubbornly with your mom for 36 hours and then finally made an entrance. I was so proud of your mom that the middle name we'd been searching for became obvious. Joy. Just like your momma's. Our prayer over you was that you would be a life (Chaia means life in Hebrew) of joy.

I remember getting home with you and you being stubborn (recurring theme?) with nursing and you and your mom screaming and crying together in frustration as the precarious dance of a tiny peanut and a new nursing mother began.

I remember Squeaky McGee...your first nickname as you made these tiny little squeak noises all the time.

I remember you snuggling on me while we both snoozed and it being one of the best feelings in the world.

I remember the moment everything fell apart. 10 weeks old, gasping for breath.

I remember them trying to get an IV as you were having a heart attack. They tried both arms, both feet and then your head. And you screamed in a way I'd never heard.

I remember you getting a helicopter ride to Akron Childrens. I drove. And I beat you there by 20 minutes. I remember seeing the last plays of the Browns game as I waited for you to arrive. They won. I knew then something was wrong with the world that day.

I remember the doctors imaging you and then the team of pediatric cardiologists looking baffled at the imaging and saying that your arteries just disappeared.

I remember the nurses who took the time amidst all the tubes and IVs and monitors to put a hair bow in your hair.

I remember them saying it wasn't good and that we had to go to Cleveland Clinic because ECMO which often served as a bridge to heart transplant was waiting for us there. I knew then that you were dying.

I remember the white walls...the sterile, lifeless, white walls...it was like an asylum.

I remember the teams of doctors, the barrage of questions, the repetition of our story, being asked if your mom and I were related.

I remember 5.

5 Days to live.

That's what they told us.

I remember the geneticist who happened to specialize in rare genetic diseases and happened to read an article about a rare disease and who happened to order an ultrasound of your belly and happened to find calcifications and who happened to come up with a diagnosis.

I remember them handing us an article about the disease and telling us once we had read that article, we would know as much as them.

I remember the doctor who said he understood we had faith but that we had to understand that your heart could not get better.

I remember your momma weeping because she couldn't hold you or snuggle you.

I remember us pleading for Ezekiel 36:26 to take place in you.

I remember the Church. Oh Chaia, if you only knew the beauty of the Church. The meals. The visits. The prayers. The way they saved us financially. The prayers. All around the globe...The prayers...The cards...you were single handedly violating the Clinic's sterile lifeless wall policy with the cards and decorations in your room.

I remember 100 days...the bird mask...Stanley the Sock Monkey...Finger Puppets...Fleas...Meeting Joe Haden...Meeting the Cavs players...Santa...Gungor...The nurses...Your mom and dad are still alive and still together because of the nurses. They may have woken you up to play with them in the middle of the night, but they saved our little family...my mom buying a GPS so she could brave coming up to Cleveland on her own...The Seahawks...meeting the sweetest photographer and her little family that captured your story through her lens...I remember 100 days feeling like 3 lifetimes.

I remember being discharged. The immense care...the round the clock tube feeds and round the clock meds...the constant vomiting...the loss of teeth...the brittle bones from the experimental treatment...the day you stopped wanting to be in your bouncer and us later finding out it was because you had fractures all over your tiny body. The constant medical/insurance stresses...the set backs...the progress...the pseudo tumor...the move to Columbus in the midst of a ton of uncertainty.

I remember birthday one at the Zoo. We finally made it to the zoo. I'd promised you daily in the Hospital.

I remember your scoot. I remember your gremlin voice when you said "Bible"...and only when you said Bible...and how inconvenient that was as a pastor, to have my kid do that.

I remember 2 years old at Grandma Thompson's house. Great Grandma and Great Grandpa Thompson wearing elmo party hats.

I remember you regaining strength and crawling again and pulling yourself up and taking your first steps.

I remember the word of the week.

I remember watching Despicable Me and Despicable Me 2 743 times. I remember birthday 3 and the most epic minion cakes of all time.

I remember the day you raised your hands in worship and sang the words to the song mommy was singing in church.

I remember you hurling in church and it making an awful sound all over the gym floor.

I remember C3 loving you and raising you.

I remember the day you sat on your little potty as Papa and Nana came into the house and greeting them by saying "Hi Papa, I'm taking a freaking poop."

I remember you calling me Ben instead of Dad.

I remember you having the lightbulb turn on after Mr. Carl had been staying with us for a week or so and you asking "Mr. Carl, are you living here?"

I remember asking you if you wanted to get married some day and you telling me "No, I want to be a restaurant guy."

I remember that 25 percent of your heart doesn't work and they still expect you to decline at some point.

But I remember Who is authoring this story. And I trust the better author to tell a better story.

And now little one, my bean, my Princess Plop-a-lot, my warrior princess---I want you to know that your mom and dad are so incredibly proud to be your parents. And your name is exactly who you are:

Life--pulse...heartbeat....breath...movement...not dead.

Joy--satisfaction in God...despite circumstances...contentment...laughter.

And on your fourth birthday our prayer remains the same: Whether it's one more breath or one more century of breaths, may your life be leveraged to the glory of God and your heart captivated by the grace of God all the days of your life. And may we get out of your way.

Love ya kid. Let's go change the world.

Happy Birthday! Ben (feel free to start calling me dad again!)


Nana Cindy said...

Re-living every moment with you, Ben, and continuing to thank God every single day for this granddaughter so beloved. I'm pretty sure God is smiling right now, for He sees your faithful stewarding of His miracle girl, and He is glorified.

Mama Karen said...
This comment has been removed by the author.
Mama Karen said...

Wow!! Crying happy tears as I walked down memory lane with you Ben. Can't even begin to tell you how my burden for Chaia has never changed. Never wavered in my faith that we are seeing a dead heart come to life. I will never forget a post where a doctor had told you there was a chance that as she grew that part of her heart that they say is "dead" could quite possibly be smaller as she grew and her heart grew. I'm still claiming she will live and not die and declare the works of the Lord. Oh the miracle of this sweet girl! Forever grateful that God made our paths cross. I am a better person to have observed your transparency with a God who knows the beginning from the ending. Oh, taste and see that the Lord is good!! Love you guys and will keep praying!!! Happy birthday sweet Chaia Joy!!!

Anonymous said...

Happy Birthday Chaia Joy!! Still praying for you all!

Tammy Y

Anonymous said...

Happy Birthday Chaia!!! Such a beautiful little girl and those amazing eyes.

Michelle Cooper said...

Loved reading this Ben and Shaina. Such a blessing from God above - and such a testimony to His love.
the Coopers (Becky and Chuck's neighbors!)

Jimi Vanderpool said...

She's a blessing to all who encounter her. Love you guys!