People tell me almost every week to “live in the moment” and “make every day count” as phrases of comfort. When people say this, you realize that it’s from a place of love and support, but even more importantly you realize that it’s a very honest truth about life and death that people only seem to know how to express in these phrases. Something like DIPG forces a parent to deal with death from day 1 and part of our battle is a constant struggle to get back into the everyday lives that we have made for ourselves and how to integrate the hard truth that these “live in the moment” phrases mean for us. This reality brings with it something that pulls at you every hour of every day. A pull that is as constant and unrelenting as a river. Some days its like a brief, occasional pull of your sleeve and other days it’s like a rope tied around your waist that makes it hard to move anywhere. It’s a steady feeling that what you are doing with your time isn’t important and you need to be doing more, being more present, ignoring the monotonous grind of the day-to-day and living as well as possible while your loved one is still with you.
When everything happened and we knew what we were up against, I was hit with an almost overwhelming urge to quit my job, sell everything I own and spend whatever months, weeks, days and hours Abby had left with me making everything as fun as I possibly can. I had dreams of selling all my worldly possessions and buying an RV, or taking the family to Europe to learn, see and experience as much as possible with no return ticket or plan outside of the 6-18 months that we have left. It’s a pull that was almost dizzying in its effect on me when I first felt it, and still is to some extent. It’s large neon sign in my brain that screams “THIS ISN’T IMPORTANT” that can grind my entire day to a halt and brings me to that hard place when I am thinking about my reality and those phrases people always say to me and my day promptly goes to shit.
When I spoke with another DIPG dad we talked about all the normal stuff like; treatment, doctors, how their friends/family were responding. When we got to work I talked about how much I love my job (I do) and how flexible my employer was being (they are) but my new friend leaned in and asked “Can you REALLY do it? It all seems so unimportant now” and I had trouble answering that question. Because I knew he felt it to, the pull that wants to know why you are going to spend 9 hours at a desk every day when your girl only has months left and you aren’t with her.
I took this pull very seriously in the beginning. I went as far as to look into logistics and entertain some of my wild ideas on what our lives were going to be over the next few months. But you slowly have to come to terms with the fact that the pull isn’t real and the pull isn’t what is best for you and your family. You have to come to terms with the fact that you can’t ruin everything you have spent years working towards, you can’t sell the house you bought, quit the career you love and the life you have built for yourself. Most importantly you realize that this pull is what you want, not what Abigail wants. She wants her life back, she wants to go back to school and learn, she wants to see her friends every day, she wants to go to ballet class and girl scouts, she wants to watch stupid videos on her iPad and have family movie nights. She doesn’t want to change everything and go to the Grand Canyon in a RV, or fly 12 hours to go see the Black Forrest in Germany, she wants her life to be as normal as possible. All that travel and adventure isn’t what she wants, that is what I want.
So you fight against the pull, you sit in that chair every day for 9 hours and do the job that you love, you let her go to school and be a kid for as long as possible. You ignore the reality that the time you have left with her is finite and running out, you ignore it to be normal and give her the life that she wants. It’s the hardest thing you have to do, but it’s the right thing (I think) that you have to do. Because all that matters to me is making sure she enjoys whatever time we have left together and if that means being normal, I have to give it my best shot.