cystic fibrosis

Cystic Diagnosis Part 6: My nightmare the night after the diagnosis

The night after we received news that Katie had cystic fibrosis, I had a nightmare. Here are the notes that I took that morning after I woke up:

I dreamt that I heard Noah calling me from outside. Now I am frightened that I may lose both of my children…

It was a faint crying, calling out. I thought that it was one of the neighbours. But, I looked out the windows (bedroom & bathroom), trying to see if Noah was there. I didn’t want to check on him in his room in case I woke him.

But, I had this horrible fear that he was sleepwalking or just walked out the front door on his own. I envisioned him stuck outside, curled up on the porch or field beside the house under the big tree, curled up in a ball, freezing.

I had a sense of panic, as if I was too late to save him from freezing. It was all I could do not to panic.

It was pretty upsetting. I was already worried about Katie’s mortality. And now, I was also worrying about Noah’s mortality as well. I felt so helpless. I felt so afraid. I felt frustrated. I felt scared.

I was processing what CF meant to Katie and to our family and it scared me. As a father, I am supposed to protect my family. But, in this case, I felt that there was nothing I could do. I’m not a doctor. I don’t have a cure. I don’t have the means to fund a cure.

It took a while for this cloud to lift. But it did. The cloud comes back once in a while. It is what it is. Can’t do much about it.

Up next: First clinic visit at McMaster

By Todd Dow

Author, Geek, CF fundraiser & Cancer Survivor. My family, baseball, infosec, privacy & devops are a few of my favorite things.

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