A Year Later

I remember sitting on our kitchen floor days after Emmett passed, next to Steve, staring at all the beautiful flowers our friends and family had sent. It felt surreal then, and still does. One day your child is there, one day not. One day you’re moving at 100 mph and the next, everything is… still. I remember so many moments from his life and our life with him. They come in waves and flashes in those moments I let myself think about it… which is most often in moments of solitude, when I can cry or tear up, and can just sit in my grief without worrying about stares or explanations. A lot of those memories are from his time in the hospital… the unrelenting beeps and panic, the desperation. To cope back then, I threw myself into learning all the medical “stuff,” trying to understand what was happening to him. What do I do with all that now?

I think about those times – times of happiness, pride, terror and utter helplessness.

I also think about legacy. (Maybe it’s the result of watching/listening to Hamilton constantly lately.)

Thinking about Emmett’s memory and his life and death always leaves me wondering about what matters in life. Is the entirety of our life what we have and experience within our lifetime? Or does it matter what we leave behind? What will our lasting memory be for those we leave behind, and for future generations?

Emmett’s life was all too brief. Three years old… about to turn four. He didn’t – with his own hands – accomplish much, but his life and the struggle it took to hold on to his life for even those almost four years had a profound impact.

Admittedly, it’s important for me to feel like his life meant something. It’s how I make meaning of his existence and suffering. Whether it’s his role in connecting different PIGA families to each other or the broader CDG community, whether it’s giving a family out there a reason to donate and learn more, whether it’s showing someone what it means to survive through adversity… it’s something that happened because he lived and fought, and it’s what he leaves behind.

Many people will try and avoid triggers in their life. Me? As sure as I am that a day won’t go by without me thinking of Emmett, I’m scared that one day that memory may feel faded. That Via won’t remember him. It gives me comfort remembering him and seeing his smiling pictures throughout our house – the house we bought primarily for him and his needs.

Another mom who lost her daughter just four months before Emmett passed, wrote once, “While we are surviving grief it can be easier to sit in some of our heavier moments: those filled with fear, regret and mourning more closely match the pain we are internalizing.” I sat with that line and think back on it because I did wonder why – when I thought about Emmett – often my mind turned to the darker times, to the more painful memories. I try and be conscious of that… to let my mind think about his happier times in addition to those feelings of fear.

I’ve thought about a lot this past year as we navigate how to mourn, how to move on with our lives, how to support others who may be facing something similar. I try and move past the regret – that if we had known how little time he had left, maybe we would have tried to provide him with more experiences, instead of always being worried that what we did would limit his time with us. I remember that I am grateful for the time we had with Emmett, but am also grateful that he no longer suffers.

So when you think of him… don’t feel bad for us; think about how we might all make a difference to others in need. That would be the best way to honor his legacy.

(Note: The mother whose blog I “stole” that quote from is Kelly Cervantes. Her blog, Inchstones, can be found here: https://www.kellycervantes.com/blog. I’ve definitely shed a few tears reading many of her blog posts over the last couple of years.)

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This was one of the last pictures I ever took of Emmett. He was already in a medically-induced coma. We had taken away the most aggressive treatments so that he might be more comfortable, and took him outside once a day so he could feel the sun on his face. (As you can see from the second picture… it literally took a team of people to get him ready to go outside, given the oxygen and number of wires he had connected to him.) As difficult as those final days were, I am glad we got the chance to say goodbye properly, and to spend time holding him and doing everything we could to make him feel loved. Many thanks – again – to everyone in his life who made a difference to him and to our family.