Yesterday, Gigi figured out what dancing is. She also figured out how awesome it feels to just let go and rock out. This is a birth rite for all kids. At some point, they learn that dancing is something that evokes pure joy, and they do it.
Gigi had never danced before. We tried to get her to understand it. We all modeled it, turning up the music SO loud that she could feel the bass booming in our wood floors, and we all rocked out for her. We gave her the sign for it. We begged her to join us.
She looked at us like we had lost our everlovin’ minds.
Yesterday, as we rolled out of the driveway for the children’s hospital before the sun even rose in the sky, I turned up the music in the car so loud that, again, the bass was thumping. We rode through nearly deserted streets toward pre-op check-in. I pointed to myself in the driver’s seat and began to shimmy in my seat. I am relatively sure I am the worst dancer to ever grace God’s earth. Doesn’t matter. I wanted her to see me. As we stopped at a red light, I turned to look, and there she was full on jamming. Then, she signed ‘dance’ to me, as if to say, ‘I get this now! I understand that THIS is THAT! And, it’s FUN!” Her trademark giggle followed.
I love that giggle.
We danced our way into and out of the OR in record time. The news about Gigi’s hearing, or complete lack of it, was exactly what we had expected, and honestly, prayed for. Our daughter is deaf. Deaf deaf. A jet engine roaring next to her ear would go unheard. It might be felt, but her ears would hear none of it. Good. This is what we were prepared for.
Later that night, the caller ID of the Cardiology Clinic popped up on my phone. I excused myself from our Dining Room table where we were working with our deaf mentor and answered.
I was met with…
“Not what we had hoped for.”
“Open heart surgery.”
The call ended with an “I’m so sorry, Becky.” This Cardiologist had to be the one to deliver the news about Tess. This is the worst part of her job, I know that. She didn’t want to tell us this about Gigi. We were hoping for a different answer. We were hoping, somehow, we could avoid cracking her tiny chest.
It is unavoidable.
I walked out to the dining room, to a table full of children, all of whom hear absolutely every tear that is shed in this house, all of them learning to sign for their baby sister, so that she too can understand just how loved she is. I smiled and sat down next to them, not letting on that anything was wrong. We bid our amazing mentor goodbye until next week. I asked them to gather around.
They were met with…
“Fight like hell.”
Neither Joe or I slept much last night. We’re back where we were 3 years and 4 months ago when Tess arrived home. We’re reeling. We need to be strong for the kids, but these surgeries, they leave a mark on us too. A mark on our marriage. A mark on our finances. A mark on our sanity. Going through this over and over, wondering if your child will die, even if the chances are relatively remote, ages you fast. We both have PTSD that we’re grappling with.
We’ll rise too. We just need to take a minute to find our feet again. To stand firm, so that the kids can lean on us.
All extracurricular activities for this evening are cancelled. I’m writing this. The kids are playing. We’ll eat dinner together.
And then, we’ll crank up the bass, and we’ll all dance.
Because now, Gigi knows what it means to dance with her family.
Forever and ever. No matter what comes.
–FullPlateMom, who loves a good family dance party, even in the middle of a storm.
The medical notes (for those of you armchair Cardiologists/heart enthusiasts):
- Gigi has severe composite aortic stenosis. She has odd anatomy. Her valve is attached to the stenotic portion of her aorta with some sort of weird membrane that complicates the repair further. A valve repair will probably need to occur at the same time they do whatever they’ll do to her aorta.
- Her left Pulmonary Artery is small, “but decent.” Her right Pulmonary Artery is a joke. It is “diffusely, severely small.” It likely can’t be stented. There’s no way it can be ballooned. Some sort of surgical repair will have to happen there.
- Her left ventricle function plots normal on echo, but the wall itself is thickened. We knew this. Her heart is working hard to compensate for these defects. While you want big biceps from a lot of hard work, you don’t want thick walls in your heart. It makes pumping difficult. We’re looking at progressive worsening of this issue if we don’t do something. Her heart will eventually fail.
The next step in our winding staircase to God knows where will be a heart cath. They’ll thread a catheter into Gigi’s heart through a vein in her leg to measure the actual pressures inside her heart. The imaging estimates, but we need to know for sure. This will also give them an even better idea of some of her odd anatomy. From there, well, again, only God, and maybe a surgeon or two, know.
One step at a time.