Chapter 11: Our Little Angels
An anecdote about life and death. And an important dedication.
This is has been the longest I’ve gone between chapters since starting this narrative. The reason is not due to a lack of writing on my part. I have been on my computer plenty, trying to sort out everything going on in my life, let alone everything swirling around in my head. Rather, I’m all of a sudden hesitant to reveal my struggle. I very much want to be the hero in this story I’m documenting. But I think I’m putting too much pressure on myself to show you how unwavering I think my bravery is.
I promised myself that I would tell you the absolute truth, as far as I can distinguish it from fiction that is. And the truth is that I’ve been thinking about death far more than I’d like to admit. No matter how hard I envision my inevitable victory over ALS, it’s very, VERY difficult to constantly block out the words “two to five years” that seemingly jumped off my doctors lips back on D-Day.
Before we get to my recent thoughts on death though, allow me to share my favorite story about life.
There are moments that get burned into your brain, and when you recall these memories you feel it viscerally. When I first saw my bride turn the corner on her fathers arm comes to mind.
But nothing stays with a man more than when he first lays eyes on his daughter.
One of my favorite pictures of me and Iris. This was on her first birthday in our backyard.
Iris came to us with her own unique flare for the dramatics. After already being induced and spending the night in the hospital, Jamie was greeted the following morning to news that our baby girl did a tail spin and was breach. I was furious because I thought the doctor was lying and flat out missed it all together. However, there was no time for that argument, not to mention I didn’t want to make Jamie more nervous than I could see she already was (yes, even the unflappable Jamie isn’t invulnerable).
My wife was immediately taken to the OR for an emergency C-Section. I had to wait outside in the hallway while they prepped for surgery. Another moment I’ll never forget. I had some words with God whom I’d been having strained relations with. My sister, whose name she shares with Iris, died from complications at birth. An event that reverberates through the family still to this day. It felt as if I was destined to relive a nightmare I knew all too well.
Nevertheless, He came through for us that day along with the doctors and nurses at Advent Health and of course the real hero of this story, Jamie. The family curse appeared to be broken and we were all treated to a happy ending. And while mom was being tended to, I was further treated to my little angel’s first act in life, holding onto dad’s finger. I knew that it wouldn’t be long until I was wrapped around hers.
Back in our room with our new dear treasure, from our window we saw the boldest rainbow streaking through the sky and we knew something divine had just taken place. Iris was named after the Greek goddess of rainbows after all.
That whole experience changed me. Before Iris came to us, I felt invincible. Yet now, much like Achilles, the greatest warrior to live, I had a vulnerability. A chink in the armor that could lead to my undoing. Every parent knows this weakness. Children are far too precious to lose.
I know now that the worst possible thing imaginable that could happen to me is not receiving this diagnosis. Rather it would be receiving news of something equally tragic happening to Iris. I think of this often as I think about my parents. Everything they’ve endured. They lost their little angel 37 years ago next month and now it probably feels like they are reliving a nightmare THEY know all too well. My heart breaks for them and they are up there with Jamie among the strongest people I’ve ever known.
I had a client inform me her son just passed suddenly. Before they could even reach the hospital he was gone. He has a daughter Iris’s age.
The death of a child before a parent is something I won’t pretend to explain. Despite that, I’m choosing to use these brutal reminders of mortality to better appreciate the time I have left.
And I do plan to outlive my parents by the way.
I wish this next part came to me from Homer’s “The Iliad,” because there’s something more romantic about ancient texts. But alas, it was an addition to the dialogue between Achilles and Briseis in the blockbuster movie “Troy.”
“I’ll tell you a secret. Something they don’t teach you in your temple. The Gods envy us. They envy us because we’re mortal, because any moment might be our last. Everything is more beautiful because we’re doomed. You will never be lovelier than you are now. We will never be here again.”
And that’s the punchline. I am alive. And so are the people I love so dearly. Most of all Iris. This story wouldn’t be a tragedy if I died but it would be if I chose not to appreciate my life. I owe my sister that much.
This chapter is dedicated to Lauren Diane Smith