Beautiful tragedy. Two words. Two simple words. Short but meaningful. Simple and straight to the point, yet powerful or even joyous but full of pain, heartache and sorrow.
I look back and think these words are the perfect definition of that time–the trial for our family, the valley we walked in. Here’s the thing, the beautiful part–we were walking and not standing still. In retrospect writing these posts, these excerpts from our story, I realize I have forgotten so many things. So many things I feel I need to share. Some beautiful and some tragic.
We absolutely knew The Lord would mend Case’s heart, we just weren’t sure how.
He could have completely healed it before Case was born. But, He chose not to.
He could have mended Case’s tiny, broken heart by making it whole in heaven. But, he chose not to.
He instead, chose to put the perfect medical team together. These doctors and nurses, they have been covered in prayer for months. These people, they would work together and come up with the plan for my warrior boy. A plan that I am sure many thought to be crazy and incomprehensible but it worked. Because of one word. Jesus. Jesus is always better.
The day after Case was born David had to go back home to finish a job. I was alone when we got the call that they were prepping Case for surgery. I was wreck. I was holding it together on the outside but on the inside I was a complete and total wreck. My parents were with me, and looking back, I couldn’t have made it through those first few days without them. We get through the first surgery but I couldn’t hold, touch, or even talk to Case and I needed clean socks. Socks. I hadn’t done laundry at RMH before we went to the hospital and I needed clean socks. So my mom and dad take me to target and I just lose it–over socks. Lose it as in falling on the floor, collapsed, crying because I’m at target buying socks and my kid isn’t with me. Instead, he’s in a hospital, surrounded by loving and kind nurses and doctors getting the best medical attention in Texas but I wasn’t with him. I hated that. Is was so difficult, the guilt and sadness consuming me–and I just withered–right there in the middle of target. My dad had to practically carry me out of the store.
Or the time when David and I went to eat at Olive Garden when Case was in the NICU and I just started crying. Our poor server, she didn’t know what to do, so she just let me cry. David let me cry, right there in the middle of Olive Garden, I was crying.
Or when we have to stay 3 extra days on the recovery floor because Case isn’t gaining weight. 3 more days of checks and pricks and sleepless nights and zero privacy days. I was so ready to leave that hospital.
Or how every single time I wash my hands with that Texas Children’s soap the memories or sterile rooms, metal sinks and life-clinging (maybe I should say life changing) days come flooding back. I will never forget the soap.
Or when our family and friends and even some of my students drove hours to sit with us in the hospital even though they couldn’t even visit Case.
Or when the parents of the kids in my class sent emails and text messages the day of Case’s surgery. Each and every family, praying for Case, his team, David and I. And the teachers send hand written notes, and my boss comes to see us twice in the hospital.
People I don’t even know pray for us, for Case, for his team. Sending us letters, care packages, donating to our Go Fund Me and other fundraisers to help offset the cost of extensive medical bills.
Doctors coming into his recovery room, wanting to lay eyes on my warrior boy. The boy with the tiny pulmonary that became an aorta. The boy who’s heart was once thought to be unmendable, the boy with now pink lips and flesh colored nail beds. They look as his scans and then look at his scar and have no words. They tell me this. Again. So many doctors tell me that they never thought it would be possible. That Case was was the topic of conversation at cardiology round table weekly meetings before and after his surgery. They, again, can’t explain his success, his less than normal but amazing recovery. I tell them there is only one answer. Jesus.
These are the people, who knew it or not, were vessels for the Lord. He revealed Himself to me, to David, to us, in so many ways. Our hearts were pursued when we turned away. He is good. He is always so very good. Not in the superficial way when we say we are blessed, because we really are, but in how He chased us, minute by minute, hour by hour and day by day. He never stopped pursuing our hearts. Because he is So. Very. Good.
Case stayed in CVICU for 7 days and then was moved to the recovery floor for 6. There were many ups and downs during those days, but eventually he was discharged to RMH where we stayed in Houston for another 3 weeks. His cardiology checkups have slowly staggered and he now doesn’t have to be seen again until January of 2018 (Feb. 15 as in two days from now!). A whole year, people. A whole year. I feel as if this is a huge triumph for my CHD warrior boy, my heart hero Case. I want to soak up the appointments, the ones with good news and cheery laughs because eventually they will change. That is the reality of being born with a CHD. That is the reality of being a heart mom.
[originally posted 2/13/2017]
*edited and updated 2/13/2018