Today marks 2 months since I lost my Abigail and our lives were sent into a tailspin. During my journey with her and our fight against this awful cancer, people always were ready to give us advice on a variety of topics that ranged from the crazy to the helpful. We had people reaching out to us weekly with articles and treatment options to consider and towards the end we even tried a holistic approach in an attempt to slow down the tumor and give us more time. It was a whirlwind of information, data and advice. However once the battle was over and Abigail had left us for a better place the communications stopped. All of the positive thoughts and prayers were replaced with condolences and sadness. Friends and family kept reaching out, but the numbers dwindled until only a few remain in constant contact. Advocates who helped you brave this lonely disease moved onto other kids who were still fighting and your child just becomes a face on a poster or a name on a t-shirt. You go from being surrounded by people wanting to help to being a family left alone trying to pick up the pieces.
I don’t carry bad feelings towards anyone over this and know it’s a natural condition to want to leave people alone with their grief. What can you say to a family that just lost their previously healthy 8 year old girl? People always ask how we are doing and most of the time I say fine or OK or we are getting by. I know people don’t want to talk about how hard it’s been for our 5 year old daughter Emma as she adjusts to being an only child and dealing with loneliness and loss at such a young age. The fact that she hasn’t been able to fall asleep by herself since Abby died. People don’t want to hear about your anxiety over your daughters gravesite not being clean or how you need to do more to celebrate her or how your biggest fear in life is forgetting her and her memory just fading away. It’s easier to just say fine or OK or we are getting by.
I also understand that a big part of this is me and what I want to share with family and friends. I don’t want to talk about having to deal with this awful depression and painful loss. How certain days it’s an effort to even get out of bed and put clothes on. How juggling this depression and still trying to be a good dad is one of the hardest things I have ever done. This is stuff that I don’t want to talk about when I am over at a friends house or out to dinner/at the bar. I want to talk about the Bears and our new QB, I want to talk about politics and Trump, I want to talk about music, movies and Game of Thrones. The desire to get back to some sort of normalcy is strong and the need to move on is something that pulls at your daily. But I need to get better about talking about the things that I am not comfortable with, because they need to be said and I am not doing myself any favors when I keep them inside.
I feel guilty talking about wanting to move on and finding a sense of normalcy, because I should be spending all of my time and energy fighting against DIPG and working towards eradicating the worst thing that has ever happened to me and my family. A disease that is going to kill 300 kids this year and next year and the year after that until a viable cure is found. But the sad truth is that I don’t have that in me right now, the fight to save my daughters life has taken everything out of me and my focus now has to be on bringing my family together and figuring how to rebuild our lives. I hope to one day rejoin the fight against DIPG and work with so many great charities and organizations that are working towards finding a cure. But for right now my efforts have to be focused inward and on myself, my wife Rachel and our precious Emma. I hope to return to work soon and start working on our charity Another Day with Abby and getting that project off the ground. Our focus will be on providing financial support for other DIPG families as they start the hardest fight they will ever face. I hope to one day expand that support to help provide fundraising assistance for families who are struggling to raise money for extremely expensive treatment options that are only available outside of the USA.
I hope to commit to writing more regularly as it’s been very hard to return to it since all it does is remind me of what I have lost and how hard her not being with me really is. I have been writing a blog post off and on about Abigail’s life and what she meant to me and our family. I put in over a month of work and a thousand plus words before I realized that it was something that I wrote for myself and was not something I wanted to share with the world. But I need to get back to writing more regularly, because I enjoy it and I feel better after I do it.
So feel free to ask how we are doing and we might tell you fine or OK or getting by. We might talk about TV or Childhood Cancer, we’ll be fine with it and just happy to hear from you.