Life, Death, and Progeria

I have been putting off writing this for a few days now, because to be honest I just don't know how. Maybe it's for fear of finally admitting all of it to myself, and making it more than thoughts in my head. Maybe it's because I think I'll shake it all off. But I am drowning in emotions and there has to be an outlet. Writing has to be my outlet.

About a month ago, Ryan and I took a trip to Florida to see his family. On the drive back, just when we were about to be home, the thought of death struck me and scared me to my core. I have no idea why, but I haven't been able to shake it since. What scared me so much was the thought of what occurs AFTER. Is there really a Heaven, a God? Am I living my life good enough to please any higher being? Am I just going to die one day, and never wake up? Am I going to cease to exist and my memory fade over years gone by? I don't know the answer to any single one of these questions, yet I cannot stop asking myself these questions every single day since that night. When I have time to myself during the day, I think about life and how it's too short. I think about how quickly a day passes. Then I think about death, decaying, and withering away. Death is taunting me. Life is taunting me. Which is it? I am so confused with all of this I could just scream. At least that was how it was up until a couple of nights ago. And then it's as if someone, somewhere, helped answer all of my questions in a way I had to piece together myself.

A couple of nights ago, my family, Ryan, and I were all sitting around the TV. A special about children with Progeria came on. It captured my attention from the get-go. I'd always been very intrigued and curious with the disease. For those that have no background knowledge, progeria is a disease that causes the body to age and deteriorate at a rapid speed. A 5 year old's body would be in the condition of an 80 year old. Yet their mindset would still be that of a 5 year old. The lifespan is not lengthy. It is a horrible and sad disease. This is the case for a small percent of children in the world, and 3 little girls who deeply touched my heart. On that screen, I saw three girls (two of them 6 years old, one of them 12) who had the biggest love for life that I have ever seen. Every day they are faced with challenges that you nor I could possibly conceive. These challenges are much larger than mine, much greater than yours. They stare death in the face every second that their heart is beating. Do you think they worry? Not one single bit. They don't waste a second - they spend their time loving large and smiling. I don't think I heard a single complaint leave any of their lips. They understand what a precious gift life is, and they utilize every tool for happiness they can manage. They look different from you and I, they develop differently. And do you know the biggest difference between these beautiful children with progeria, and you and I? I'll let you draw your own conclusion and answer that yourselves. For me, they opened my eyes and my heart. They spoke to me on such a deep level, and they answered all the questions I had.

I don't know what happens after we die. I don't know if there is a God, I don't know if there is Heaven. I want to believe there is something, but I can't know for sure. Nobody can know for sure until that time comes. I don't know if what I am going through is a curse or a blessing. I guess in actuality it could be seen as both. It is a curse. I think about death every single day. I think about ceasing to exist and everything that I love eventually disappearing off of this earth, perhaps forever. I think about there being no life whatsoever after this life on earth ends. And yes it is terrifying to me. I worry because the days I have are too short and every moment I live goes by far too fast. I get sick to my stomach at the thought of losing my life and the lives of those dear to me. However in contrast, it is a blessing. I am aware of how short this life on earth is. I am aware that a moment will pass you by so quickly you may not even realize it. I understand how precious one life is. I appreciate every second I am given, and I try not to waste any of my time. Life is a GIFT. It should not be wasted, it should be appreciated. Please, if you take anything from this blog, understand that you are so beautiful, so important, and your life is special. Try not to let those little moments pass you by. Put that gorgeous smile on your face and enjoy this life while you have it. You never know when it can disappear from beneath you.

I would love to hear from each of you that read this, somehow. I want to know your favorite things about the life you live: the big things, but the small things especially. What is it that gives you hope, gives you joy, gives you love and a sense of fulfillment? For me it's looking into the eyes of the man I love - and REALLY looking. For me it's a room filled with my family's laughter creating the most lovely sound I have ever heard. For me it's the sound the wind makes when it rustles the leaves of the crispy brown leaves in fall. It's a warm smile from a stranger. It's the crunchy sound the snow makes when you walk on it. It's the smell of Thanksgiving dinner coming from my grandma's kitchen, and the way we all come together as a big family and put aside all differences, and why can't this be every day? Why can't every day be full of joy and love? There will be hardships. There will be times when you feel like you have hit the bottom. But you are alive, and there is always joy to be had. Look a little bit deeper into this life you are living. Look a little bit deeper into those little things that make you smile. I could list things that make me smile all day. It's important that we don't ever FORGET any of these things. Cherish each other and the time you have.

If you took the time to read this, I want to sincerely thank you from the bottom of my heart. I hope that at least some of it will sink in and stick with you.

-Nastassia*