1095 Days

Three years. 1095 days. 26, 280 hours. 1,576,800 minutes. 94,608,000 seconds. And I feel every one. Painfully aware of my missing piece in every second I have lived without you. Written out like that it looks like a lifetime. It feels like a lifetime. It feels like a minute. I didn’t think I would survive a minute, a second, and somehow I have survived three years. Yet I don’t feel like I can survive another lifetime.

This just doesn’t get easier. I don’t want it to. Life shouldn’t be easy without you in it. You were too special, too precious for me to live easy without you. I know what I’ve lost. I know what you’ve lost. And every day I’m reminded of it. What can possibly be easy about that? Life continues to go on. People forget. Well not forget, but for them it’s no longer as intense. They no longer realize the intense pain I experience every one of those seconds. It’s not foremost in their minds. It’s been 3 years. For most it seems like a while. For me it’s like yesterday. They have their own lives, their own joys and celebrations, their own pains, their own traumas. They think I’m okay. I’m not. I hate the question “how are you?” Most don’t want the real answer. Most are just making conversation. I feel like an imposter. Leading a double life. The one in which I act like everything is fine and the one in which I feel like I’m dying inside.

To watch your friends grow up, reach milestones shatters me. Your younger friends and family surpassing you in age. Experiencing things you never had the chance to and yet in an ironic twist of fate you had to grow up much too quickly and were wise beyond your years. How can I ever be okay with the constant reminders of what never was and what never will be? There are days I want to just scream out loud that you died. That my lovely, only child died. It feels like such a disconnect to be out in the world and living my life when you are no longer and I just feel like the world should know. Especially when I don’t feel like smiling, when I don’t feel like making small talk. Especially when people start talking about their children and their perfect lives. I smile and nod and desperately want to run away.

I am futilely trying to fill this hole that seems to be growing bigger. Maybe it will continue to grow and grow and swallow me whole. I have learned to live without you but I don’t like it. The things I do are meaningless without you. They are just time killers, a way to get through the days. That’s not to say I don’t have my moments of fun. I do. And they are more frequent as time goes on. But they are fleeting and always tainted, never pure joy. The highs often turn into lows because I don’t have you to share them with. And that disconnect. How can I be happy in a world without you? Bittersweet. Always on my mind.

It pains me to not know who you would be today. Your likes/dislikes. Your friends. Your aspirations. Your hopes. Your dreams for the future. I used to imagine you in different scenarios but it’s getting harder and harder to do that. I can’t picture you dating, choosing colleges, becoming a young woman. Well I can a little but the picture is probably not accurate. This life is just too hard and empty. No one should have to live like this and yet too many do. I will continue to do what I have been doing, just finding ways to pass the time knowing that one day it will all be over.

Three years ago we made an agonizing choice that no parent should ever have to make. We made the decision to turn off the machine that was breathing for you, keeping you here with us. The only thing separating life and death. We laid in bed with you, holding you, as the settings were lowered, and then lowered again, continuing to be lowered until it was off. Until there was only you and us and silence, and clinging to the last minute unrealistic hope that maybe, just maybe, you would take a breath on your own, then another, and another. Because hope is all we had. Without hope, how could we keep going? Hope is what carried us through from the time of diagnosis until the time of your death. Our hopes changed throughout but it was always there. Always a glimmer. Until there wasn’t. Until there was nothing left to hope for. We did not get the miracle that so many were praying for and we continued to hold you until the time of death was announced. That was when “Fight Song” came on. That was when the sun came out outside. That was when my world was shattered into pieces and that is how it remains today. I’ve tried to put back together some of those pieces but it’s impossible. Many are missing. One very important one that can never be put back, that will always leave me less than whole. They don’t fit together well. There are scars and cracks and they are sharp and jagged and cut me. I am fragile and know that it won’t take much to shatter me again, and again. And yet I’m still here. Broken.

I will forever be honored that I got to be your mom. I like to think that I was chosen for the job, that somehow G-d had so much faith in me that I would be able to parent you through an illness in the way that you needed. That I was the one picked for you to love and support you through all of your trauma. If I had to go back and do it again I would always choose you to be my daughter. Even with the pain and heartbreak, getting to be your mom makes it worth it. Those 11 years and 7 months. Not nearly enough time. But yet. I got to be your mom for 11 years and 7 months. And I wouldn’t trade that for anything.