Terror At 1297 Lakeview Road

How much do you want to know? How much do we share? It's been a struggle through these past days to figure out the line. Mostly, I write what comes to me. If i surpress a thought, if it was important, it comes back and gets joined with a newer one.

I never want or wanted this blog to be about trisomy 18. or even just about zoe. i hope you can see it's about a lot more, about the story, the struggle, this faith walk. about family and Jesus and his body here on earth. Somewhere in there, i keep struggling with how much you want to know.

A few nights ago, Jen left Zoe with me and was going somewhere for something. Zoe was in her car seat and on her way out, Jen told me to make sure her diaper got changed and get her out of the car seat.

But because I'm me and I'm a man and a dad I saw a lot of value in just letting Z stay in the carseat. She was comfortable and sleeping and I could cook dinner and get a ton of things done.

So it was a good amount of time before I looked at the clock and realized I hadn't changed Zoe's diaper and hadn't really done much with her at all. I knelt at her car seat and leaned in.

Her hand was cold.

Her hand was cold and she didn't move when I started to unbuckle her, and there was this terror in my heart, this terror and me saying and thinking "Not now." Please not now.

I ran my knuckle on her chest and nothing. I poked her hard.

Zoe swiped at my hand and scowled. She squeaked and tried to go back to sleep.

I didn't share that story when it happened because nothing happened except Zoe's dad experienced terror and I'm not sure you all want to hear about it nor would you know what to do when you heard it. It's a singularly terrible experience, made all the harder when I know that what happened will happen again, and the ending of the story will be even more traumatic.

So today I had just finished talking to a friend from work via email and messenger when I noticed
Zoe was snoring loudly. She snores loudly and it's kind of funny because Jen and I both do so it's very genetic. But knowing that apnea is the leading cause of death for trisomy 18 children, it bothered me this time. It was loud and she wasn't breathing great.

So I poked her and woke her up, which she hated. And her face was flushed and she wailed. And I let her wail. Because if she's wailing, she's breathing. I'll let her cry and be upset with me instead of feel terror.

I keep telling you all our lives have slipped to normal, and for the most part, it's true. But these stories are there. When I told Jen the apnea story she told me some back. I think we both realized we're just living in this weird moment. We feel the same and we're living at the same address and eating the same food, but this thin slice of terror has been introduced into our lives and it changes all of the normalcy.