CPN | I am a proud father. Allow me to tell you about my daughter.

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I am a proud father. Allow me to tell you about my daughter.

I think Father’s Day is a Hallmark holiday of the most execrable sort. In its historic roots, it’s a cheap rip-off of Mother’s Day. In its modern incarnation, it’s often a celebration of men fulfilling our basic responsibilities, as if we deserve a day in our honor for not abandoning our children. Even in happier times, I never liked Father’s Day and urged my wife not to do anything special to celebrate. So if this reflection seems a bit jaded, maybe that’s part of the reason.

One thing I’m never jaded about is my daughter Jessie. I’ll talk about her to anyone who will listen. Jessie was an exceptionally joyful person. She enjoyed the simple things in life – and yes, that’s a compliment that’s paid to a lot of people, but Jessie took it to an extreme. How many people experience exhilaration watching a TV program they have seen a thousand times? How many shout for joy at a restaurant when their mashed potatoes arrive? How many people’s joy bursts out in laughter when they get a hug from a loved one? Jessie did all those things, all the time. And despite being nonverbal and intellectually disabled, she expressed her love for the people in her life in a straightforward way that the rest of us only wish we could emulate. Spending a day in Jessie’s presence was celebration enough – on Father’s Day, or any other day.

Years ago, my best friend told me that Jessie would touch more people in her short life than the two of us combined would if we both lived to be 100. He was certainly right about that. Maybe I talk about Jessie so much now because I want to extend that influence further. Maybe I talk about her because, 18 months after her death, talking about her brings a part of me back to those happier times. Or maybe I talk about her to help me remember, out of fear that my authentic memories will fade, and that I will substitute an invented memory for the actual experience of knowing – and being loved by – such an extraordinary person.

I may talk a lot about Jessie, but I don’t talk much about my own feelings, beyond the tinge of sorrow that I’m sure comes through in my reminisces. I don’t see the point of getting into it. I feel her absence profoundly, every day. It is never far from my conscious mind. What else is there to say? Besides, on those rare occasions I have chosen to talk about my feelings, nothing good has come of it. Sharing my sorrow doesn’t build people up, or draw them closer to me; to the contrary, it brings them down, and drives them away.

Most of the people who know me best, know enough to empathize. That’s fine; they’re never going to understand, and frankly it isn’t necessary for them to understand. Empathy is enough.

There are some folks who can’t empathize – they get visibly uncomfortable when I talk about Jessie, and they certainly don’t want to hear about my grief. That’s fine too.  I do keep those people at arm’s length, however, which means I’ve pushed away some folks whom I once considered close. I’m less upset about that than you might think – once you’ve reckoned with the impermanence of your beautiful child, the impermanence of a friendship is a small thing.

But while I might be a bit jaded, I am not bitter. During Jessie’s life, so many people did so many things, both large and small, for Jessie and for our family – sometimes out of love for my wife or me, but most often out of love for Jessie. Her unconditional love brought out the best in people, including me. I won’t ever get tired of talking about that.

To hear more about Jessie and her shiny bright life, with Sanfilippo Syndrome, visit her family’s video page here. on CPN.