“Where is Gus?” Jack asked when he got in the car after school this week.
“He’s home with your dad. Ellie and I just finished at her doctor’s appointment, and I didn’t have time to go get him before it was time to pick you up from school,” I said.
He looked over the edge of the side of Ellie’s car seat and started his inspection. “What kind of doctor? Did she have to go to sleep?” he asked.
“She was at the heart doctor. He took some pictures from the outside and looked at her heart. It’s like an ultrasound,” I told him. “The doctor has this wand that uses sound waves to take pictures of what is happening inside her body without having to put her to sleep.”
“Oh, yeah,” he said with a smile and an attempt at an Australian accent. “I know what that is. I saw it on ‘Crikey! It’s the Irwins.’ They were looking for a baby in a rhinoceros.”
He put his hands up towards the front seat to stop me from responding and said, “Hear this: Was her heart all black and gray?”
“Yep,” I laughed. “It was on the picture, but its not black and gray in real life.”
“The black and gray picture is just the best they can do, though, right? Without cutting her body,” he said.
This whole time, Ellie was all encompassed in eating the promised chocolate chip cookie reward she gets anytime we step foot in the Arkansas Children’s Hospital. She has an all-in attitude, even when it’s food, nothing is going to stop her from enjoying every morsel while she dances and hums to herself.
After I passed Jack the cookie I had gotten for him too, I was back to my all-encompassing world of a parent of a kid with complex medical conditions, processing all of the new, scary things that I had just heard.
Her cardiology appointments are scheduled for every four months, and what happens in the lead-up to those appointments is hard to explain. My husband and I really try not to talk about it too much because there is no point. We can’t see what is happening inside her body, but we know we will find out on that day.
We tell ourselves that worrying won’t do any good and pretend that we aren’t thinking about it, but we both are. It always seems that just enough time passes between appointments that we sort of start to let our guard down and almost find ourselves easing into the comfortableness of a regular family without seeing the dark cloud that is chasing behind us. But soon enough, the days tick by and it is time to gear up to go back for testing.
The night before an appointment is always the same:
“Ellie has her cardiology appointment tomorrow,” one of us will say to the other lying in bed in the dark just before sleep.
“I know. I wonder what they will find,” the other says.
“I don’t know. I mean, the older she gets the harder it is to think about … you know … not having her around,” someone says.
A couple of weeks ago, I got a call from ACH asking for a photo of Ellie to be used at the upcoming American Heart Association’s Arkansas Heart Walk. I didn’t have anything that was high enough quality for them to use, so we decided that a staff photographer would meet us at her upcoming appointment in the Cardiology Clinic for a quick photo shoot.
Ellie loves going to the hospital and gets excited to see the “daw-Tor” (doctor). She does not need any encouragement to get dressed to go, but this time when I told her someone would ask her to say “cheese” and take her picture, she gasped and then set to work.
She chose a pink top with embroidered flowers, blue leggings, red cowboy boots and her new red glasses for the occasion. She wanted two bows (pigtails), both pink and needed her purse, a plastic screwdriver and JJ, the baby doll, as her entourage.
When we got to the appointment, the photographer was waiting on us and Ellie was ready to perform. She smiled, jumped, danced, clapped and sang, saying “I did it!” after pretty much camera shutter click. The nurses and staff ooh-ed and ahh-ed and told her how pretty she looked. Nurse Del even turned on some of her favorite music. It was just like a Vogue fashion shoot.
They say a picture is worth a thousand words, and Ellie’s pictures from that day sure are. What we see on the outside – a vibrant, happy, curious little girl who loves with all of her heart – does not match with what the pictures captured from the inside – an organ with problems far too complex to put into just a few words with outcomes that are impossible to predict, an unpredictable, delicate ticking bomb that could explode at any minute.
Each time we see her heart from the inside, we are left with so many questions and uncertainty, that it does feel black and gray. The dissonance that is created from seeing her wear her beautiful heart on the outside combined with the burden she carries on the inside is frustrating and causes her doctors, her dad and me a lot of pain and loss of sleep.
Our clothes dryer broke this week. I scheduled an appointment with the repairman and texted my husband to let him know the details.
“I just hope it’s a simple fix,” he texted back. With everything else that is going on, that text carried a lot more weight than just dryer repair.
“Please, just give us a simple fix,” I thought. “We really need simple this time,” I thought.
By the time we got home after the appointment on Wednesday, Ellie had fallen asleep. I got Jack inside and unloaded all of the backpacks from the car before I went back out to wake her. I stopped and watched her for a while.
Talking about her and her heart as if they are an object feels like the safest way to tackle these appointments. It’s easy to stay objective if you look at the black and gray pictures or the charts and graphs. It’s infinitely harder when you look over see all of the potential right there in the flesh, breathing and simply dreaming with chocolate chip cookie crumbs in her lap and on her face.
Subscribe to Typically Not Typical for email delivery here: