A lot of the time, it didn’t.
Most of all, I made sure not to let Maddy see that. I put on my ‘you’re-going-to-be-fine’ mask and suffered through it. Sometimes, I was sure she saw right through me. If she knew where my thoughts led, she was brave enough not to admit it.
I just hoped she didn’t go to the worst place in her head, too.
That was my greatest fear, on top of - well, you know. I was afraid that she’d let fear get in the way of living her life. I wanted her to know that her illness didn’t define her. It didn’t have to get in the way of her enjoying the world and doing whatever made her heart happy.
She wasn’t like the other kids. She wasn’t sporty, she wasn’t strong. Not physically, anyway. She had the will of a bull, and that’s probably the one thing that kept her going, kept her optimistic, and kept her believing in herself. She wasn’t about to give up. She might cough her way through it, but she was determined to do everything the other kids did in school.
Honestly, I admired her more than anyone I’d ever known.
She’d had trouble breathing for a while, and the doctors kept insisting it was asthma. First, it was exercise induced, they said. But after she had an attack while sitting next to me on the sofa watching a movie, they changed her diagnosis and said she must be allergic to the strawberries she was eating, before quickly going back to a general asthma diagnosis. To me, none of it made sense.
She barreled through, she pretended she wasn’t as tired as she was, but I knew better. I could see her struggling.
I’d insisted the doctors do all kinds of testing, and they’d insisted over and over they didn’t find anything. It was maddening.
Once a doctor told us she might grow out of it, and I’d been clinging to that hope for a while now. But every time there was another attack, that hope was shattered.
“Do you want to go eat in the cafeteria after we leave?” I asked Maddy. We were sitting in one of the rooms in the ER at Rocky Mountain Children’s Hospital. We knew most of the nurses on the floor by name since we’d been here so many times and they were always so wonderful with Maddy.
“Okay, sure. Maybe they have the same chocolate cake they did last time?” she said.
“Maybe. We’ll see,” I said, hugging her close, and wishing for the millionth time that I could make her better myself.
But I couldn’t.
We were in this together, and so far, there was no end in sight.
The doctor walked in and I knew by the look on his face, he had no new answers for us.
“How are you feeling now, Maddy?” he asked.
“I’m okay, now. The oxygen machine always helps,” she said.
“That’s good,” he nodded, turning to me. “So, Ms. Jayne, all the tests came back the same as they always do. Unfortunately, we still don’t know anything new. Did you notice any new factors that contributed to this latest attack?”
“No, not at all,” I replied. I was beyond frustrated, I was exasperated. I felt helpless, and that was the worst feeling in the world when it came to your child.
“Well, let’s just keep at what we’re doing,” he said. I resisted the urge to yell at him, to tell him he didn’t understand because it wasn’t his daughter that was sick.
“Yeah, right,” I replied. “So, basically, do nothing until it happens again.”
“Unfortunately, until something new happens, yes,” he replied. “I know it’s frustrating, Ms. Jayne. I know this isn’t easy. Unfortunately, it is reality, though. You’re doing great. So are you, Maddy.”
“Thanks, Dr. Taylor,” she said, with a smile. I was amazed at her strength, her ability to smile even in the midst of such frustration. She accepted things so much better than I did. I wanted change. I wanted a cure. And I wanted it right fucking now.
“Of course. Hopefully, I won’t be seeing you anytime soon, okay?” he said, patting Maddy’s arm.
“Let’s hope not!” she exclaimed, hoping off the table. “Can I go get cake now?”
“You sure can,” he said. “Take care of yourself, Maddy.”
“Bye, Dr. Taylor,” I murmured, gathering our things and walking out of the room, holding back tears of frustration and anger.
Maddy slid her tiny hand in mine and we walked through the large hallways of the hospital together. I sighed and smiled down at her.
“I love you, baby,” I said.
“I love you too, Mama,” she smiled up at me, the events of the past few hours seeming to fall away into the past so easily for her.
I had a lot to learn from Maddy.
But most of all - I needed to take care of her.