Saturday, May 6, 2017

All the Feels

It's been 5 years. 5 years since we moved to Columbus with a little girl who was very sick.

5 years since we survived the 100 day stay at the Cleveland Clinic.

That place. Awful.

We got there in the middle of the night. Chaia had been transported from Akron Children's Hospital to the Cleveland Clinic. Talk of drastic measures needing to be taken. It was raining.

And the sterile white walls and the melancholy music that played as we entered the place made it feel more like asylum than a place to help people.

And the news was awful.

No diagnosis. Us rehearsing the same terrible story over and over to every medical specialist imaginable and getting no clarity on why our little girl was dying.

5 days to live.

That place. Painful.

I watched my wife's joy wither in that place. She couldn't hold her daughter for days. Chaia was in bad shape. She was intubated, restrained, hooked up to more cords, IVs, and monitors than I could keep straight.

It went from bad to worse. Rare genetic disease. Calcified arteries. Survival rate between slim and none. I remember holding strong to hope the day they took her for a PET Scan to find out how much of the heart was dead vs. how much was dormant. The doctors came around that morning for their rounds and asked how we were doing. I said confidently and humorously, "Ready to crush a PET Scan today." A few hours later, they closed the curtain and gave us privacy as we wept over the news that her heart was the one that was crushed. We were the ones who were crushed.

She wasn't going to make it.

Some freakish disease, I was a carrier...Shaina was not. So a spontaneous deletion of that exact gene on her side of the genetic coding had to happen. The odds of it happening were about as good as the odds of Chaia getting out of the hospital.

We had a doctor come in and share that he was also a man of faith (he knew we were holding out for God to do something miraculous.) He was Hindu. He said we needed to understand that Chaia's heart was not good and it would not get better.

And the news was painful.

People rallied. We couldn't stand the white walls. So we asked for cards and prayers and anything with color. People came through with well over a thousand.

Our church showed us Christ. They visited, prayed, went through the social work channels to get us financial assistance, brought meals, gave us date nights, set up a fund to help with expenses, and so much more.

The lady who brought us the mail when it came it just laughed each day as she brought 50 or more cards and packages. She even made a sign for Chaia that said "Miss Diva". People prayed from all over the world.

Praying For Chaia from Mustard Revolution on Vimeo.

That place. Hope full.

And somehow, Chaia turned a corner. Still a bleak prognosis, but no longer talk about her life being confined to the hospital with quality and quantity of life in question. Now there were hopes of something more. They started weaning us off the stuff that would keep us in the hospital so that we could go home.

And the news was Hope full.

And we made it home. On 12 meds a day, 3 to 5 times a day. Tube in her nose. Continuous feeds that went through the night. We would have to get up twice a night to reset the feeds. She threw up entire feeds at least a couple times a day. We changed her bedding every night in the middle of the night when she vomited over everything. She developed a pseudo tumor in her brain. Her bones weakened from one of the experimental treatments and she ended up with fractures all over her body from her body being stripped of calcium. She had massive oral and texture aversions. Blood draws too often. She was on a med that made her devastatingly sick and we just had to sit there with her as she suffered. Wouldn't eat anything...Fell from lack of strength and lost multiple teeth. Virtually every system in her body in some way shape or form: dysfunctional. Shaina on the phone for hours a week trying to get meds ordered in timely fashion and seeing a flawed system's shortcomings in patient advocacy.

That place. Sorrowful.

The toll something like that takes on you and on your marriage for such an extended period of time cannot be overstated. We were weary. (Granted we were planting a church and having dozens of people in our home every week, but if anything it helped people see us bleed. There is something incredibly relatable when you allow others to see your suffering.) How do you find God in the middle of your child's immense pain and low quality of life?

To be honest it was much easier than you'd think. We experienced the tears of God. It still appeared as though at some point another pound gained or another inch grown would cause her distressed heart to go into worse heart failure and she would be done in.

And the news was sorrowful.

Slowly but surely, Chaia has experienced healing. I can say with confidence that God's deliberateness is bringing the healing has been with high intent. He could have reversed the disease instantly, but we never would have been drawn to trust God's goodness even in the midst of something that didn't resemble good. Chaia's bones became less brittle and she started crawling, pulling herself up, and eventually walking, running and everything else. The news has been consistently better news.

A couple weeks ago, Chaia had her eyes looked at. They suspected that by taking her off the med she had been on, it would lead to the pseudo tumor in her head increasing in pressure (which if left untreated will lead back to the puking and potential blindness. Instead, the pressure remained stable! The doctor was so surprised, he suggested we go buy a lottery ticket. (We didn't...Dave Ramsey would not approve.)

This past week, Shaina took Chaia to the Cleveland Clinic for her first check up in a half year.

They did an ultrasound of her head, an echo and an ekg of her heart.

The cardiovascular surgeon, who we haven't worked with, but has been around since Chaia was first admitted (and was the first to meet with us to explain a course of action), looked at her echo results and then peeked his head in to tell Shaina, "You have a medical miracle in the room with you." And just as quickly as he'd stepped in, he stepped back out.

The cardiovascular head of transplants, who has been over Chaia's case since the beginning came in, took her off two more meds and said that the remaining two meds are such minuscule amounts that she could probably stop those but for his own peace of mind he wanted her to keep taking them for a little bit. From 12 meds 3 to 5 times a day to now 2 meds, twice a day!

He also said that looking at her heart now, you could not even begin to tell that she had had a major infarction. There is still some dysfunction, but Ezekiel 36:26 continues to take root. A heart of stone becoming a heart of flesh!

That place. Beautiful! Joyful! Delightful!

5 years.

Some Heaven. Lots of Hell.

But you have to know: He makes beautiful things. He is good. And often his goodness is most tangibly experienced in the Awful, Painful and Sorrowful places of your life.

Healing is right here.

I'll be honest, I would prefer to short-circuit this process. I would rather fast forward to the beautiful, joyful, delightful and hopeful.

But we can't know Promised Land without Wilderness.

We can't know Resurrection without Cross.

We can't know Love without Cost.

To those whose story is awful, painful and sorrowful...keep going:

The next chapter could be the best chapter.

Not because of you, but because of One who holds the pen.

The Author is graceful, powerful and wonderful.

And He wants to give you your heart back too.


Mama Karen said...

All I can say is WOW!!!!! Right before our eyes, we have seen despair turn into hope! God is the God of turning stony hearts to flesh! He is Chaia Joy's healer! Yes the road has been long and it isn't over yet but the light is shining brighter on this journey! From the beginning I have always said "she will live and not die". And Jesus is healing her day by day. My faith is stronger because of Chaia's story. Thank you for sharing your baby girl and her story of healing with the world. The story is still being written. Hallelujah!!! Hugs!!!��

Anonymous said...

No words sufficient to write here. Never stop telling your family's personal Ezekiel 36:26.

Allice said...

Thank you for sharing this beautiful story that God has unfolded. Continued prayers for you and your "miracle child" and family. I have Ezekiel marked in my Bible with Chaias'a name on it. Love to all.