Disturbance at the Heron House: Volume 3

…and we were still waiting.

My wife heard back from the doctor a week after the testing was done to see whether or not Alexa had Cystic Fibrosis, and the word back was that the test was inconclusive. They would have to do genetic testing to see whether or not she tested positive, and in the meantime we would have to keep waiting. Over a month later and we were still in that holding pattern, completing the treatments twice a day, and dealing with the weight of knowing we were one step closer to our child possibly having CF, something we were supposed to be “simply ruling out” with the initial test.

And during that time period we worried. What you need to know about my wife is that in our relationship she’s the worrier on the outside, and me, I’m the worrier on the inside. I might look like I’m doing just fine, but underneath the facade I’m freaking out. In fact, sometimes I just sit still and shake because I’m so worried. It happened when I was so worried that Madeline might have DS, but then when she tested positive for it it was okay. I was able to deal with it, and I figured that would be the same way with Alexa and the possibility of CF. The possibility worried me a lot more than the actual diagnosis, because if the diagnosis came back that she had it then I could make a plan, then I could deal with it.

But Heidi, she worries from the start, and it shows on her face and in her demeanor. Reading about all the issues that children with CF have, she had driven herself into the cycle of “what if.” And don’t get me wrong. I’m not saying her way of dealing with it is wrong. It’s just different how we approach things, but we eventually get to the same place. If that place is acceptance, then we work on it, and if it’s a sigh of relief then we sigh at the same time. We were both preparing ourselves for the possibilities during that month, just in our different ways.

Alexa, meanwhile, had settled into the routine imposed by the “vest,” and Madeline left her alone long enough for the treatments to go as planned every morning and then again at night. Now, this may sound simple, but if you know Madeline, you know this was a huge feat for her to leave her sister alone for even one second. But I think that on some deep level she understand that her sister needed the therapies and gave her the time and space to get them done. In fact, during some of the therapies her sister let Madeline sit right next to her so they could watch together whatever program she had on.

By the time another month had gone past with no word from the doctor, my wife began calling. The frustration continued to mount as at first they didn’t get back to her, and then later as they said they didn’t have the results back. When you’re waiting for news on whether or not your child has a debilitating disorder you just want to know right now, and every second of waiting is an excruciating eternity. It seemed like every day we were calling, and every day they still didn’t know when the results would be in. Until finally last week I got a text from my wife while she was at work.

“CF test came back negative!”

And I let out the breath I hadn’t realized I was holding.

Sam

Disturbance at the Heron House: Volume 1

Disturbance at the Heron House: Volume 2