My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has severe hemophilia A, and inhibitors. We live in middle Georgia.
Until three years ago we knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two strong, energetic, healthy boys and we thought we had a pretty good hold on this thing called parenthood. That all changed with Patrick. His diagnosis threw us into a whirlwind of challenges, questions, and a new life of struggles and fears. But we also life goals as a family.
I often joke that if something is going to happen, it’s going to happen to us. Only three years into this life with hemophilia, we have had at least a dozen ER visits, x-rays, CT scans, stitches in the forehead, hematomas the size of golf balls, black eyes from head injuries…the list goes on. It’s easy to fall into the trap of, “Let’s live in a bubble, and avoid anything remotely dangerous,” but that’s not how our family is meant to live. Hemophilia or not, we are meant to explore and love all that life has to offer around us.
Recently we had the amazing opportunity to attend the HFA Symposium in Las Vegas. We planned to arrive a day early to make a detour to the Grand Canyon. It made sense to attempt this, but at the same time, we also wondered, were we crazy? We were looking at three kids ages eight and under, a four-hour plane ride, then a four-hour car drive, with one of the children having a medical condition that requires so much preparation beforehand. What if something went wrong? Would we be hours away from anywhere that can help? These were all questions of fear, and fear leads to nothing good.
The travel details are a story all on their own, but we arrived at our hotel safely late that evening after sixteen hours of travelling. All that was left of our adventure was to get everyone in bed, and then get up early to see the sunrise at the Grand Canyon. We just had to get up in time to do an infusion first.
Remember when I said if something is going to happen, it’s going to happen to us? Our morning infusion gave us a bit of a scare; I could not get Patrick’s port line to flush or get a return. We had this problem a year earlier and had to have Patrick’s port replaced after only nine months. On the morning of our Grand Canyon trip it felt as though it was doing the same thing again. We made a mental effort not to panic, trying not to worry about how far away we are from help or hospitals. After about twenty minutes of praying and moving Patrick’s arms up and around, the port started flowing again. We missed our sunrise time, but we did not let that stop us from enjoying the rest of our day.
There was a moment during our short time in the Grand Canyon State Park that will stick with me forever. A tour guide recommended taking a small hike down into the canyon. I was nervous about it because of how narrow it gets at times and about the uneven footing. I worried about Patrick twisting an ankle or falling on a knee. That would have led to many hemophilia complications in such a remote area. I wanted to carry him the entire way but he kept telling me, “No, I can do it.”
Even at three-years-old he is conquering mountains I never could have and he pushes my wife and I to conquer new ones. He reminds me every day to not live in fear of hard or scary things, but to face them head on. The reward for our hike into the canyon was finding beautiful paintings on a canyon wall of wild animals being hunted by Native Americans.
Our day was such an amazing life moment for us as a family. Yes, hemophilia is scary, even more so as a parent of a young child who is at an age of curiosity and adventure. However, hemophilia is not something that I want to hold our family back from missing out on life’s great rewards and adventures. I want that sense of curiosity and adventure to always grow and flourish.
Greg Hogan, and his wife, Jackie, lives with their three sons in Georgia.