"A Glimpse of Heaven and a Taste of Hell," this is the motto for the Tahoe Rim Trail Endurance Run. I experienced that and more during my 2017 running of the TRT100 mile endurance run. This was my final attempt at the Tahoe Rim Trail 100 mile run.
What was different this year then in years past you might ask? The difference was my reason for running. My Why, my driving force this year was my daughter Taylor. She is "Why" I was running and "Why" I was focused on completing this run. I wanted to be able to tell both my children not just her that no matter happens you never give up, you get up and you keep going. You never stop, no matter what. You may not succeed the first time, the second time or even the third time, but you never stop trying. The mind is a powerful tool and if you put your mind to a goal, you can accomplish anything. That is what I will tell my children one day when they are old enough to understand, but more importantly this is how I want my daughter to live her life. Never giving up, always trying and reaching her goals no matter what the obstacle may be in front of her.
Why is this so important to me you ask? Well, because my daughter is hard of hearing and has Usher syndrome type 2c. What does that mean you may be thinking? When she was born, she failed her newborn hearing test in the hospital. My wife and I were wrecked with emotions. Oh maybe it is just fluid in the ears the nurses told us, but my wife and I knew it wasn't. We went to more hearing test and finally received the diagnosis, she has hearing loss and the next step was to find out how much hearing loss there was. We went to more testing, one test took 2 hours to complete and that was just one ear, then it took another 2 hours to complete the other ear. After that hearing test we knew, she would need hearing aids. We still at this point didn't know if the hearing loss was progressive or not. This process took about 3 months to complete everything. It was a long three months trying to understand this new world we were in. All the thoughts went through our heads, "How much hearing loss is there? Can she hear us now? What does this all mean? But there was one thing my wife and I both knew and we knew this before we left the hospital, we as a family were going to learn sign language, ASL. We wanted a way for her to communicate with us and us to communicate with her. And so our journey began.
But our journey didn't stop there, we had finally come to terms with the hearing loss, though I think one never really comes to terms, it was a fact, we couldn't do anything about it, but we could learn sign language, we could give her a way to communicate. We had a plan. During all this time we did ask for genetic testing because we wanted to find out what type of hearing loss she had. Was it Connexion 26 or some other form of hearing loss. We received word it wasn't Connexion 26, and that they had narrowed it down, but needed to confirm before they could tell us. The emotions we went through again it was like a roller coaster. We had our minds settled it was Connexion 26, but it wasn't. What was it, could anything else be effected by this? All kinds of questions we had but no answers only worry and fear.
By this point I had returned to work, we were learning sign language as a family. Taylor was going to school one day a week at a deaf and hard of hearing class for newborns. This way we could incorporate more sign language, and any other needs she may have during her newborn years. Then my wife called me in tears, and I knew, we had a hunch that is was Usher Syndrome.
Usher Syndrome is the most common condition that affects both hearing and vision. A syndrome is a disease or disorder that has more than one feature or symptom. The major symptoms of Usher syndrome are hearing loss and an eye disorder called retinitis pigmentosa, or RP, which causes night-blindness and a loss of peripheral vision through the progressive degeneration of the retina. The vision loss worsens over time, and currently there is no cure. Our little girl potential could loss her vision, it would be like looking through a straw and her hearing loss could potentially be progressive, meaning she could loss the rest of hearing over time. This syndrome is so rare only 25,000 people have been diagnosed with it.
I immediately broke down at work, and left right away, I knew I needed to be home with my family. It was a lot to process and we had already processed the hearing loss, but now the vision too. What does her future look like? When will she lose her vision? What does this all mean? So many questions, so many emotions. How does one respond to that news.
As parents we are suppose to protect our children, but right now I felt completely powerless to do anything. This was out of my control and I couldn't stop it. How do I tell her? Do we tell her? Of course we have to tell her, she is going to know, she needs to know, but when? What can we do right now to better prepare her and our family? My wife and I read everything we could get our hands on about Usher syndrome. We are learning sign language, she will learn Braille when that time comes, a service dog, yes that is a possibility. We are going to do everything we can to advocate for her until she can advocate for herself.
The fear of having this diagnosis is real. The fear of what her future holds, what does that look like? The fear in general at times controls me. The fear........We don't know when she will start to lose her vision, we can only look for signs that her vision is starting to go, is she afraid of the dark? Is she bumping into things? How is her peripheral vision and same of hearing. We have hearing test every 3 months to track her hearing. She currently has hearing aids so she can develop spoken language. We are using sign language to help develop communication, we have deaf mentors that are teaching us sign language and deaf culture, she has an amazing deaf and hard of hearing teacher, we are doing everything we can to make sure we don't fall between the cracks in the system. But the fear is real, it is there every day and at times debilitating.
It's the fear of the unknown, but we can't live in fear. Because then, are you living at all? Fear cannot control me, I must control my fear, my emotions are real, I can't ignore them. But what can I do? I can love my daughter and be thankful each and everyday for her. She is amazing, she is strong, and nothing is going to slow down. I can see that in her. She is independent. She will develop 2 languages as well as our son. I can share with her my journey to 100 miles when all I wanted to do was quit and lie down, when I was laying on the side of trail completely spent not knowing how I was going to get up, but I did. I found the strength to get up and put one foot in the front of the other. I found the strength through her, she taught me that. I got up and finished that race. I finished that race, because I was drawing strength from her, I was running this race for her. I needed her to see me crossing the finish before she losses her site. That is why I fought so hard at TRT100. That is why I continued on when there was no possible way I should I have. I was throwing up the final 50 miles, my legs had nothing left in them, but I had my goal my "Why" and it was her my daughter.My daughter gave me the strength I needed to complete that race. When she is a bit older I will share that story with her, and I hope she never forgets her "Why". Never give up, keep moving forward no matter what and always have a "why" in life.
I may not be able to change my daughters diagnosis but I can do everything in my power to give her the necessary tools she needs to be successful in life. Never give up that is what I will tell her.