April 20, 2017
Being rare has really made us feel isolated. Isolated geographically from others that share our same journey, but we knew there were many more of us out there, but we were an island. Last month we went to the HPS Network conference in Long Island, New York, and the irony is on the island we found our people.
I quickly resolved that yes, I/we would be a blubbering mess all weekend. I was so happy to have Jodi beside me with that same lingering pain, and my brother Eric who through all of this has been a huge rock for us. He gives us so much comfort just by sitting in our pain with us, crying with us, and just listening. There is something so powerful about being able to let people be and to just be there in it with them. That is Eric, he doesn’t try to fix it or clean it so it may look a little more shiny, he just plops right down in the muck with us. We love you for that Eric.
The conference was amazing and we met so many wonderful people. Friday night they had a “Year in Review”, it was so amazing to see how much they were all doing to fund raise, bring awareness, and so much more. In the morning on Saturday they got everyone together to have what they call the “Family Album”. Everyone got a chance to share joys, pains, celebrations, and losses. Thank goodness Jodi spoke for us, because she is so much better at keeping it together than I am. When Tegan was a newborn I remember walking into Anchor Center (school for blind children) for one of the first times and seeing two little white haired toddlers running down the halls of the school. They raced around, tackled each other, climbed all over the furniture, just bouncing off the walls like every typical 3-4 year old boy. I could have sat there and watched them for hours, these two little humans gave me so much hope. They showed me that Tegan was going to be just fine. The “Family Album” was just that for me. I listened as people who have HPS talk about their kids, the amazing travels they had that year, who got engaged that year, what careers they had, who got their lung transplant and so much more. I saw adults with so much ahead of them and lives full of adventure. It was so hopeful for us. I could see how Tegan would find love, maybe have kids of his own, travel the world with his friends, and create a life full of adventure and love.
After the “Family Album” we had breakout sessions and I went to a parent group for parent of kids with HPS. It was so amazing to meet so many parents who were going through what we were going through. Some had babies, others had older kids, and some were parents of adults. Each story they all shared felt to connected to our story. We cried, laughed, and we learned a lot from those who survived the early years.
On Saturday night we had a huge banquet dinner and Tegan and Rylan headed out to the dance floor to dance it up with Uncle Eric. They had so much fun. We also met another family from Colorado that also just found out about their daughter. It was so wonderful to meet them and hang out. We swapped doctors and stories. It felt like for the first time ever we had someone in Colorado that knew what we were going through. We hope to get to know them more and continue to support each other through this.
On Saturday all the doctors/researchers doing work on HPS got together for the “Meeting of the Minds”. They literally spent all day Saturday sharing their research and findings with each other, and on Sunday they came together to share it with us. It was incredible to hear about what they were all doing, I met researchers from the (NIH) National Institute of Health and so many others who were looking at all aspects of HPS. I was able to ask questions about their research (it was totally an amazing science moment for me) and meet one on one with a doctor about studying the impact to carriers (I will write more about that later). It was really, really amazing and a little heart breaking. Even with as much research that they are all doing there still is no cure, or potential prospects that are in testing, and that is hard to swallow. Research takes time and time is ticking.
What we took away was our desire to get involved. Donna (the founder of the HPS Network) continued to say, “Let’s get some skin in the game!” That is exactly what Jodi and I want to do, make a dent in this beast. We are throwing around some ideas with friends and family and I will update you on all of that, but we have some great ideas about how we can raise money for research, education, and support for families. What I do know is that many of you are waiting to know how you can help and “get some skin in the game” and I love that we have team! Jodi and I are lucky to have some talented family and friends who are going to help us make this happen.
Again thank you all for your love, laughs and tears with us. The power of your presence means so much to us.
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