For a guy that has spent the better part of his adult life living in the same town, I have had an obsession with traveling since I can remember. Before my 21st birthday I had visited places like; Australia, Guatemala, Jamaica, Mexico and a large contingent of the lower 48 states. When I was 16 years old I flew by myself to Newfoundland Canada to stay a week with a friend I had met when vacationing in Florida the previous summer (probably not the smartest decision, considering my parents never met the people I was going to be staying with). My entire extended family was in the Baltimore/DC area and my father was employed by United Airlines, it was the perfect situation and it gave me a great sense of enjoyment growing up. When Rachel and I married we spent the best five days in Kauai, HI and during our vacation made a promise to spend our first anniversary the following May traveling in Europe. That European vacation never happened because only a few weeks after returning from our honeymoon, we got the news that she was pregnant with Abigail. After that we went into a 6 year hiatus where the only traveling that happened were the trips I had to take alone (when she was pregnant with Emma) and the few times I was lucky enough to travel for work.
Despite the 6 year hiatus my love for traveling never left and every summer we talked about “next year” being the year that we finally got to go on our next adventure as a family. But something would always inevitably come up and our plans would be derailed; one year it would be 4 weddings in a 6 month time period, the next year Rachel was pregnant with Emma, the following year we bought a new house and the year after that I changed jobs. Finally in 2015 things were stable enough (and the kids old enough) that we took our first family adventure to Texas. The following year it was our great family road trip to Washington D.C. and before her diagnosis we had the customary family Disney trip on the horizon for 2017. We had a standing promise that every summer we were going to take a trip and I was hoping to instill the love of travel and seeing new places that had been such an important part of my childhood.
I’m telling you all of this back story due to the fact that I am currently writing this in Hawaii and since our initial diagnosis, this has been our 8th “family adventure” in that span of time. My girls have gone from clueless, open-mouthed tourists to kick ass, get through the security line traveling professionals. We have seen and experienced different parts of this country and we have learned and engrossed ourselves into different cultures. We have made life long memories as a family and with every good month that we have been fortunate enough to have with our girl, we have been planning our next adventure for the following. But now it seems, that this adventure is going to be the last we get to experience as a complete family. I don’t say this to get sympathy or moan about my situation in life, but at this stage as a parent with a DIPG Warrior I say it because this is my reality. Abigail has experienced serious progression in her symptoms over these past 4 weeks and is now struggling with both walking and getting her words out. Instead of staying at home to rest up for her next MRI and planning our future treatment plans, we have decided on adventure. Getting her through the airport and completing a 12 hour travel cycle was one of the most physically and emotionally challenging things I have ever done, but sitting here tonight I know it’s one of the things that I won’t regret when I look back on this time in my life.
Every time I think about cutting this trip short and going back home to be closer to our doctor and support system, she talks about how happy she is in Hawaii, how much she loves it and wants to move here one day. I feel a sense of overwhelming pride as a father, because I know that the love of traveling and experiencing different places has taken root in her and will stay with her for the rest of her life (however long that may be.) This is important to me as a parent, because I know my kids might end up with some of my bad traits (sarcasm, quietness, uncertainty) but it fills me with a great relief knowing that they have picked up some of the good ones. Bringing her to a place that is very special to me as our last adventure is cathartic in a way that I have trouble putting into words. I’m not going to stop fighting for her and hoping/praying as much as I can that she will be the first kid to beat this horrible disease. There is so much uncertainty, dread and anger that comes from being a parent of a kid with terminal cancer, it’s important to remember the great parts about being a father.