Sunday, February 16 2014
In 1986, my dad was diagnosed with an inherited disease called Von Hippel-Lindau (VHL). On June 9, 2012, my dad passed away at age 48 from that disease. In September of that same year, Tyler and I found out we were expecting Mr. Jax. He was born on April 11, 2013. On April 13th, we discovered the cloudiness in his little eyes.
As you can imagine, I was already having a hard time dealing with the fact that my dad was not here for the first big milestone in my life since his passing, having my first child. Then to find out my son was not perfectly healthy was a huge blow. I began asking the question, “why me?”
Words can’t explain the feeling of finding out that the perfect moment I had been picturing in my head all these months, wasn’t so perfect after all. Instead of going home together as a family, we were transferred to the University of Iowa. When Tyler had to return to Des Moines for work, and my visitors had left for the day, I sat in my 4-pound baby’s room and cried with him in my arms.
"Why not me?"
I began to feel better when we started getting answers. I felt a lot better when we formed a plan. Then, Jaxon had his transplant and I finally felt like things were moving in the right direction. Between all of the appointments and eye drops, I accepted that our lives were never going to be “normal.”
That’s when I started posing a new question to myself. Instead of asking, “Why me?” and continuing to feel sorry for myself, I started asking, “Why not me?” Why shouldn’t I be given this child who is showing me miracles day after day?
At first we were told that Jaxon could not see more than lights and shapes. We were also told that Jaxon would be delayed in hitting his milestones. But day after day he has proven those things wrong. Day after day I get to see these miracles unfold. This kid is killin’ it!
If Jaxon would have been “normal,” guess where I would be everyday? Work. Instead, I get to stay home and witness every awesome thing that he does. I have discovered a hidden talent that I never knew I had (writing) and I get to share it with you fine people. I get to call this little boy, who has already overcome so much and inspired so many in his short life, my son. Doesn’t sound so rough after all, does it?
We All Have Chioices
I learned a lot from growing up with a terminally ill parent. I never knew how long my dad would live. He showed us all miracle after miracle. I used to call him a cat because he showed us that he had 9 lives.
My dad’s sense of humor got us through some of the worst times. When he was woken up from a medically induced coma after his first brain bleed, a nursed asked him his name, the date, and all of the other questions to test his mental state. Finally, she asked him if he knew where he was. He replied, “Yeah, a shithole.” He made us laugh to show us he was still putting up a fight. He showed me how to have a good time, even under terrible circumstances.
He also showed me that you have the choice to either cry about your misfortunes as a way to gain sympathy and attention or you can display strength and courage to overcome those misfortunes and be an inspiration to those around you. As things got worse and worse for him health wise, he and my mom displayed more and more courage to show me that things were going to be okay. I could never thank them enough for that because they gave me, not only a normal childhood, but also an amazing childhood.
With these lessons from my parents, I realized that I had a choice. I could either feel sorry for myself because my son has a medical issue or I can make the best of our situation and do everything in my power to give him a happy life. What kind of example would I be if I thought of his condition as a negative part of my life and used it to gain sympathy? I would only be showing him that it’s okay for him to do the same.
Your reaction to disappointments in life is a choice. You can let them overcome you and lead an unhappy life. Or, you can make a fool of life’s tricks by taking the things that are supposed to make you unhappy, and turning them into something that sets you apart, that makes you thrive, that pushes you forward. That is how you smile through adversity and I’m thankful my parents taught me how to do that. My goal in life is to teach others how to do the same. Especially, my Captain Jax.
Captain Jax on Facebook: https://www.facebook.com/CaptainJaxFFS
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