I recently received an email from a former graduate school classmate. She wrote to tell me that her 7 month old daughter was just diagnosed with a rare and fatal disease that would lead to a diminishing quality of life until she passes away at four or five years old.
In the midst of this most grievous time, she wrote to tell me that she has been a faithful reader of this blog and reached out to thank us for...providing a road map, I guess, for how to survive hell. She said, "I have a clarity of mind and perspective on this crisis-turned-lifestyle that I owe to you and Laura. So thanks for bravely paving the way for those of us that would follow. You helped me understand, before I barely knew what was happening, that our little family will persevere, and although it will suck A LOT, we will be stronger for it. And most importantly, there will still be joy in our lives."
This is quite possibly the most powerful confirmation I have ever gotten that there is a point to all of this mishegas we have been enduring for the last four and a half years. If something she gleaned from us helps her figure out a way to find joy in the life she will face over the next 4-5 years, I will die a happy woman.
When Simon got sick and we were tossing and turning on the crazy seas that come with critical illness, I kept looking for perspective, some sort of lighthouse, something out in the distance to focus on. I knew that one day I would be able to understand why all of it happened. I knew, with a certainty I can't explain, that even if Simon didn't make it, I would somehow be able to make sense of it.
At the time I sure as hell couldn't have told you what it was, but I'm getting clearer and clearer about what it is. Part of what our journey on this planet is about, and part of why we are both compelled to write about how we're managing, is to hold out the very perspective that she closed her email with. There will still be joy. There is always, always room for joy.
Even in our darkest hours in the ICU, even on the worst days, we hunted for joy. Invariably we found it. Even if it was a tiny nugget like a friendly garage attendant asking about Simon at the end of a wretched day, we polished it up and turned it over and over in our hands until it was warm. I never have felt as loved as I did when we were in the hospital with Simon.
It feels cruel on some level, that I couldn't truly tell how loved or strong or perfectly matched to my wife I was until I was faced with the death of my child. But I will take it. If joy is found twinkling in the dark, dark night, it is meant to be found. It is no mistake. Pick it up and take it with you. You're going to need it later. I am still using that shiny lining to paper my life, to reflect the love and connection and strength I still have four years later.
Life in the face of death (for us anyway) became about the little things. Our perspective got SO myopic. In some ways I was never more...content is not quite the word.
Quiet.
I was never so quiet as the days that Simon was in crisis. In some twisted way, I treasure that time, because I was forced to step out of the craziness of day to day life and could do nothing but just BE. Life got very very simple and pleasure got very, very valuable. I walked around with the filaments of my heart seeking kindness, gentleness, humanity, anything to remind me that I wasn't alone. With my guard down and heart seeking, I was startled to discover that love and kindness and connection lurked everywhere. I had just been moving with my eyes focused so far in the distance that it was hard to notice the sweetness at my feet.
It's hard now. I'm back to being busy and feeling lonely and like I didn't really accomplish anything at the end of the day. It's hard to remember those days when my sole purpose in life was to be with Simon, love Laura, and seek joy. My eyes are set week, months, even years out and I can't see the treasures hiding in plain sight.
Today, I consider myself reminded. Today, there shall be joy.
In the midst of this most grievous time, she wrote to tell me that she has been a faithful reader of this blog and reached out to thank us for...providing a road map, I guess, for how to survive hell. She said, "I have a clarity of mind and perspective on this crisis-turned-lifestyle that I owe to you and Laura. So thanks for bravely paving the way for those of us that would follow. You helped me understand, before I barely knew what was happening, that our little family will persevere, and although it will suck A LOT, we will be stronger for it. And most importantly, there will still be joy in our lives."
This is quite possibly the most powerful confirmation I have ever gotten that there is a point to all of this mishegas we have been enduring for the last four and a half years. If something she gleaned from us helps her figure out a way to find joy in the life she will face over the next 4-5 years, I will die a happy woman.
When Simon got sick and we were tossing and turning on the crazy seas that come with critical illness, I kept looking for perspective, some sort of lighthouse, something out in the distance to focus on. I knew that one day I would be able to understand why all of it happened. I knew, with a certainty I can't explain, that even if Simon didn't make it, I would somehow be able to make sense of it.
At the time I sure as hell couldn't have told you what it was, but I'm getting clearer and clearer about what it is. Part of what our journey on this planet is about, and part of why we are both compelled to write about how we're managing, is to hold out the very perspective that she closed her email with. There will still be joy. There is always, always room for joy.
Even in our darkest hours in the ICU, even on the worst days, we hunted for joy. Invariably we found it. Even if it was a tiny nugget like a friendly garage attendant asking about Simon at the end of a wretched day, we polished it up and turned it over and over in our hands until it was warm. I never have felt as loved as I did when we were in the hospital with Simon.
It feels cruel on some level, that I couldn't truly tell how loved or strong or perfectly matched to my wife I was until I was faced with the death of my child. But I will take it. If joy is found twinkling in the dark, dark night, it is meant to be found. It is no mistake. Pick it up and take it with you. You're going to need it later. I am still using that shiny lining to paper my life, to reflect the love and connection and strength I still have four years later.
Life in the face of death (for us anyway) became about the little things. Our perspective got SO myopic. In some ways I was never more...content is not quite the word.
Quiet.
I was never so quiet as the days that Simon was in crisis. In some twisted way, I treasure that time, because I was forced to step out of the craziness of day to day life and could do nothing but just BE. Life got very very simple and pleasure got very, very valuable. I walked around with the filaments of my heart seeking kindness, gentleness, humanity, anything to remind me that I wasn't alone. With my guard down and heart seeking, I was startled to discover that love and kindness and connection lurked everywhere. I had just been moving with my eyes focused so far in the distance that it was hard to notice the sweetness at my feet.
It's hard now. I'm back to being busy and feeling lonely and like I didn't really accomplish anything at the end of the day. It's hard to remember those days when my sole purpose in life was to be with Simon, love Laura, and seek joy. My eyes are set week, months, even years out and I can't see the treasures hiding in plain sight.
Today, I consider myself reminded. Today, there shall be joy.
Written by:
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| Jaime |
