My daughter Jessica was diagnosed at the age of 2 months with Cystic Fibrosis. A fatal genetic disease. At the age of 19 she was listed to receive a double lung transplant. Her quality of life had really deteriorated after losing 20 pounds her first semester at college. She was, and still is, a fighter so she continued to take online classes even though just existing was hard. She would tire so easy that just walking across the house was a chore. She was on oxygen 24/7. But none of that stopped her. After a 14 month wait she received a call on the night of February 24 that the hospital had some lungs for her. She was at peace with the whole situation knowing that all would be well. And well it was. She was on her way home 8 days later. With minimal rejection and one bout of high blood sugar that put her in the hospital the past two years has been amazing. She is now back in school studying to be a Sign Language Interpreter. GOD IS GOOD!
Update from Jess:
Wow, 13 years… It has flown by! Grab your tissues. I just about needed them while writing this! Before this journey I don’t think I could have ever dreamed that I would be where I am now. That I would ever have the life I have now.
I was adamant when I was little, 5-6 years old, that I would live to be 100. As I grew older, I realized that my goal probably wasn’t realistic for me. By middle-school, I just wanted to live to be old enough to have wrinkles or grey hair. High-school, I wanted to see middle aged. 10 years ago I was just trying to figure out which month that year would have the least affect on those around me and try to hold out that long. With each step backward from my goal of 100 years, a little part of me died. My personality grew smaller, my opinions less important to me, and my presence grew silent. I wanted it that way too. The less I affected the world around me, the less I would hurt those I left behind. I didn’t like pictures being taken of me, not just because I was practically a walking skeleton, but because the little impact that I thought that I had. I wanted that impact to be positive, to be of life and joy, not death and sadness. Looking back 10 years ago, I didn’t let myself fully grasp how close death was to my door. I knew it was coming, but I was still going to fight tooth and nail to hold it off as long as possible. Fighting for the most important people in my life that I didn’t want to cause any more sadness.
Then, God saw fit to answer my, and so many others’, prayers. While the loss of Kyle Ernst from this world will never be a good thing, it did create something wonderful. It gave me life. I don’t mean just in the sense that I am still alive, but also in the sense that all those parts I thought were dead weren’t. They were just tucked away, and now they could come back out! My presence picked up in volume. My opinions mattered to me again. My personality was back! I would have people tell me I was like a whole new person. I would think, “No, I am just getting to be the person I am. The person I was always meant to be.”
I had made a list of things I wanted to do post-lung transplant. Things like blow out birthday candles, dance, roll down a hill, hold my breath for 15 seconds. Those all seemed so small once I reached the other side of transplant. I could dream and work toward bigger things now! I could dream of seeing my 20s, middle age, and older. I was able to look forward to wrinkles and grey hair again! Reset my goal for reaching 100 years old. While I have been able to do almost everything on that list and then some, there have been moments where life wasn’t shiny and perfect. For instance, a year and a half ago I needed another transplant – this time a kidney.
When I began to doubt my future again, my family stepped up (especially Philip Bledsoe, since he was my donor). They made it clear to me that, again, it wasn’t God’s plan for me to leave yet. There was still more life that I needed to live. And my mom has been there pushing me and supporting me, holding my hair back when sick, taking off from work to be with me during the many hospital visits, sitting up all night in ER, the list goes on because she has been telling me since I was little that as long as there was breath in her, she was going to fight to make sure there is breath in me for a good long time.
Kyle and his family’s gift to me was not a one time thing. It has been a daily gift. Every day I get to wake up because of their generosity. I get to see parts of a life that I had given up on having: seeing my brother graduate high school; moving out of my parents’ house; going to college; getting a job; finding the love of my life; being called middle-aged. I have gotten to LIVE so much life in these 10 years that I had once lost hope of having.
When looking forward to this moment in time and imagining what life would be like, I didn’t think I would be doing as well as I am. I didn’t think that my breathing would be consistently in the highest numbers of my entire life. I NEVER thought I would weigh this much, lol. So much of my current life would have been unbelievable to my 20-year-old self. I can’t even begin to imagine how the next 10 years will go since this 10 has blown my expectations out of the water. Then the next 10 after that, and so on till I am a 100-year-old woman looking back over all the blessings and gifts I received because of one very important boy and his wonderful family, God, with His amazing timing and perfect planning, and the amazing people in my life that have pushed me to be here, even when I thought it was nearing time to quit.
I wrote this the day we were celebrating my 12 year transplant anniversary. This “breathday” is a little different for me. Along with all the wonderful things I’ve been able to see, do, and experience over the last 12 years, I’ve gotten to do some mundane and less pleasant parts of life too. However, each one has been a little celebration for me, as 12 years ago, it didn’t look like I would be around to do these tasks. So instead of “Oh, great, a colonoscopy” ; it’s “Oh! Great, a colonoscopy!”. I have looked forward to every little thing about growing older and continue to look forward to what is still to come! Bring on the wrinkles and grey hair, I’m excited for it!