The passing of time is strange. Right after Abby died I remember talking with other parents who lost children three years ago or longer and having a hard time processing that. At the time the grief was so fresh and raw that I couldn’t comprehend living with it for a three weeks, let alone three years. When your struggling to get through a week or a month, the concept of living with a loss like this is unfathomable, my mind couldn’t wrap around what three years would be like. It felt like trying to read a book in a language I didn’t fully understand.
But then you wake up one day and it has been three years. Time hasn’t stopped, life hasn’t stopped.
You look back and realize you’re on your third job since she left. You moved into a new house and have constantly searched for ways to live your life in a way that would hopefully make her happy. You wonder if you’re running from something or if this is just a natural progression of life. You have moments of happiness and moments of sadness that come and go, unrelated to her or DIPG, but you constantly think about what she would think about it. What she would be interested in now, what kind of person would she have become if she wasn’t the unluckiest 1% of the unlucky 285 kids who are diagnosed with cancer every year? You realize your life is going to be spent chasing those unknowns, forever wondering what she would think about or who she would be.
You see her friends out in public, now 11 years old and it’s like someone punches you in the chest. You have friends with children the same age and it’s difficult to be around them, even though you want to be. It’s a feeling of trying to make your life good again and knowing it will always have a ceiling that you will never be able to break through. You realize one day that her sister is now older than she ever got to be and the fact sits on your heart like a mountain.
The grief settles in for the long haul, it’s constantly shifting and changing to fit your life, no matter how much you try and change things around it. It’s eternal and you cannot run away from it. People told me three years ago that “Grief is a part of life” and I hated that, what a bunch of bullshit I would think. But three years have taught me the validity of that statement, regardless of the size of the loss, grief is a constant companion. Sometimes it’s a specter looming large over everything you do, sometimes it’s small and almost unnoticeable, but it never goes away and you can’t run from it.
I’ve spent the last three years wrestling with the grief and how to deal with it. Do I make it a part of me and wear it like a badge for everyone to see? Do I bury it as deep as I can and try to not acknowledge that it’s a part of my life? At points in time over the past few years I’ve tried doing both and have realized that neither are for me. I can’t be the Cancer Dad Warrior dedicating his life to nobly battling childhood cancer for the sake of others, I don’t have it in me and that’s OK. I also can’t be that person who buries it deep down and tries to leave that part of himself in the past, I can’t do that and that’s also OK.
I’ll always be searching for how to fit this loss into my life and I doubt I will ever truly figure out how to do that….. and that’s OK!
Lately I’ve been more active in the DIPG community and specifically talking with other fathers about loss. It always feels strange saying I lost my daughter three years ago and I get the same incredulous statements from dad’s who have experienced recent loss on how I am able to live with it. I always tell them the same thing, you take it a day at a time, you figure out how to get through it and you spend the rest of your life figuring out how to live with it. Time doesn’t stop and life will move on with or without you. It has been a positive experience for me and a way to stop burying my grief.
But all of this really boils down (and almost always does) to how much I miss her. I miss her jokes, her smile, I miss coming home from work to see her, I miss waking up on weekends and talking with her. I miss her presence and my life isn’t ever going to be that good again without her in it. All of the questions you ask yourself about why this happened or how unfair it is take a backseat to the fact that you just miss her and that will never change.
With DIPG the passing of time is always strange.