Harley with a Funko POP of her namesake, age 10
Harley with a Funko POP of her namesake, age 10

Last Friday I recorded a podcast on the theology of hope with Dan Wotherspoon for Mormon Matters (available now). The other guests were Brian Hauglid of the Laura F. Willes Center for Book of Mormon Studies and Patrick Q. Mason of Claremont. Though the podcast was by Mormons for Mormons, I had a lot to say about traditional Christian views on hope and eschatology.

Dan asked us at the end of the podcast if we could answer the call of 1 Peter 3:15 and “give a reason for the hope that is within [us].” I have given a personal testimony here, but I wanted to repeat here what I said on the podcast:

My daughter was born in 2006 at the end of a healthy pregnancy in which I’d had every reason to expect a healthy baby. As I looked down at her resting in my arms for the first time, a horrible thought came into my head. I felt like I was being silly, but in that moment my fear and dread were all-consuming. I had to say it. “Does my baby have a cleft palate?”

The doctor and the nurse exchanged confused glances and looked at me like I was CrazyMom. I thrust my daughter back at them, made the nurse take her to check her palate. I’m sure she was expecting to say, “No, CrazyMom, your baby does not have a cleft palate. Please stop acting crazy now.” Instead, she called out, “Actually, doctor, can you come and take a look at this? I think there’s something here…”

It was the beginning. My daughter had a partial soft cleft palate, the smallest kind of cleft palate there is and very easy to miss, but this was just the tip of her disability iceberg. It turned out that my daughter was missing parts of her 22nd chromosome, a condition known as velo-cardio-facial syndrome or DiGeorge syndrome. Her symptoms have included: cleft palate, low IQ, behavioral problems, speech problems, feeding problems, hypotonia, large umbilical hernia, ventricular septal defect, and teeth problems. She has had five surgeries since she was born and needs at least one more. She is now 10 years old and will be in a fifth grade general education class with a one-on-one aid. I look at that unusual moment in the delivery room where I knew about the cleft palate before the medical staff did as a moment that bonded me to her and her to me and us to God.

I had a bit of an epiphany a few weeks ago when I was watching Adam Sandler in Punch-Drunk Love. Sandler’s character, Barry Egan, is obviously someone with some borderline disabilities and severe social awkwardness, like my daughter. Watching Barry Egan struggle to connect with others and make it in the world—watching how badly his condition was exacerbated by his verbally abusive sisters—I realized that my daughter would probably always be someone who needs some closeness, guidance, and protection. I realized that my daughter might always live with me or might at least need to live close to me, and I realized I was okay with that. It didn’t matter whether or not I ever remarried; my daughter was going to be my best friend, and with her in my life, I was never going to be alone.

Adam Sandler made me reflect on life. IT CAN HAPPEN

For my daughter, that was the beginning, and that is possibly the middle. But how does it end? I said on the podcast that I think people forget what heaven is going to be like for the disabled. We get so used to those with a mental haze being unable to understand and keep up with us, we forget that they aren’t always going to be like that. Someday, the haze of their disability will be removed, and they will remember every unkind thing that was said and done to them in this life.

My hope is that, one day, my daughter and I will greet each other in Christ’s kingdom, and the haze of her disability will be removed, and she will be just as intelligent and quick as anyone around her. She will see clearly then where she has spent her entire life looking through a glass darkly. We won’t be mother and daughter anymore, nor will we be able and disabled; we will be equals. Two women, two friends, two sisters in Christ who made part of their journey through life together. And I hope my actions in caring for her in this life will have made me worthy for her to say to me, “Mom, you were my keeper when I needed it the most. Thank you.”

That is my hope.


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