I’ve debated writing about this for more than a month, because my son is private and it’s not my story to tell. But, I think his perspective can help SO MANY people in their daily struggles that with his permission, I decided to dive in.
Kasen is my first born and the one who taught me what the unconditional love of a Mom felt like. (His pregnancy also taught me the love of Little Debbie Christmas tree cakes by the box…) When he was born, he was literally perfect. I had always thought babies ALL looked like old men, but he was beautiful. I didn’t let anyone touch him. I was so protective of this miracle (to the point of completely annoying everyone who desperately wanted to hold him!)
Over the last 12 years, I haven’t lightened up much on being protective. He’s very tolerant of my “momma bear” ways and knows that me trying to keep him packed away tightly in bubble wrap is only bc he holds half of my heart. He is funny, kind, filled with faith and is honestly one of the most amazing people to hang out with. I’m super proud of the kiddo he is.
A few years ago, he failed his school vision test and was recommended that he see the optometrist. We took him in and were told he had lazy eyes. He was given a prescription and that was it. A normal, every day appointment with a normal, every day outcome. The glasses were only to fix the lazy eyes because his vision didn’t actually improve with any prescription. We were told it was normal and trusted the doctor.
Over a year into glasses, we noticed him taking them off A LOT and didn’t want to wear them. So we asked for a referral to Wolfe so they could fix the lazy eyes rather than putting a “band aid” on the issue. It was there that we were given the news no parent wants to hear. Our son will, at some point, be blind due to a rare genetic disease.
We instantly hit Google and read everything we could find about this awful disease. I couldn’t help but retreat into my negative thoughts of his future. What could he do (as a job) blind? If he is blind prior to college, how does he take classes? How will he get around if he can’t drive? He will never get to be a carefree, independent adult. He wont get to choose his career solely by his interests like his peers. What a heavy burden for a child to carry, and it killed me not to be able to “fix” my son. (It still does)
The quote “When life gives you more than you can stand, Kneel” was my first thought. And that’s what we did. Our Catholic faith was the arms that caught us, held us, and gave us peace in a situation we had no choice but to give to God. “Let Go and Let God” became the phrase I said over and over and my rosary was no longer a beautiful decoration that adorned my server.
We were incredibly blessed to be accepted by the leading doctor in this particular disease at the University of Iowa children’s hospital. Our “google expertise” told us there was no cure and no treatment, but we were still so thankful to have the opportunity to go to the best hospital and best doctor for his disease.
Our first appointment was October 11 and I can’t say enough about the AMAZING staff at the U of I. We were already massive Iowa fans, but we left with a whole new appreciation of our beloved Hawkeyes. (The “wave” has always made me tear up. NOW, it makes me full on cry. It’s a really special place.)
The testing took half of the day. He went from one room to the next getting scans and tests. He handled it all like a champ, but the moment where him being 12 came to light in the most hilarious way during the test where he and I sat in the dark for 45 minutes.
They needed him in complete dark; no phones, watches or light of any kind. Because he’s so small, people tend to assume he’s younger than he is. The nurse hooked him up to numerous electrodes and then asked him if he would like to play with play doh while he sat in the dark. Him saying “yes” surprised me, but I assumed desperation had kicked in as he had already been tested many hours by this time.
I took my rosary and quietly prayed between Kasen’s random comments and giggles. When the nurse finally came in, she took his tray and set it on the floor in front of me while she conducted a series of tests. When the lights were flipped on, I wanted to melt into the chair. My son, giggling and pointing, had made 3 play doh penis’ and they stood proudly on his tray. He mouthed “penis” at me, snickering, as the nurse bent down to fetch his “masterpieces”. She grabbed one and said “and what’s this?” With zero hesitation, he said “wizard towers!!”
She seemed to buy into it…. as I died a little inside trying to contain my laughter. I have no idea how he came up with the quick cover up, but it made a tough day a lot more interesting! Kids have a way of seeing fun in unexpected moments, and I was super thankful for it!
Because he has very large cysts in his eyes, he has prescription eye drops to help shrink them. I have to put these in three times a day. They literally drop him to his knees EVERY. SINGLE. TIME. They hurt. Terribly. Not only was it my genes that gave him this horrible disease, but I also have to hurt him over and over to try to help him. The Mom guilt is real… and breaks me daily.
In the midst of the diagnoses that will leave my son blind, a lifetime of eye drops that are extremely painful, the risk of a devastating injury every time he plays around like a normal 12 year old, and the fear associated with all of it… Kasen said to me that he has a gift. I had no idea what he could be referring to, so I told him he has lots of gifts. He said “Mom, I have a gift bc I get to walk into the U of I children’s hospital where a lot of kids are fighting to LIVE. I’m only fighting to SEE.”
My chin hit the floor and I cried. For a child with a very heavy burden to carry to have that amazing perspective blew me away. It was a moment I will never forget; a moment that made my life feel so full. I couldn’t help but feel incredibly grateful in that moment (and in the moments since!)
After 9 pair of sport goggles, 2 sets of headgear, hours of research and long talks with God, our son is ready to start the wrestling season at Winterset Junior High. He made the decision that regardless of the risk, he wants to be 12. He wants to have the same experiences and opportunities to do what he loves. There’s nothing in this world that he loves more than wrestling, and we are incredibly thankful for our wrestling family for supporting us.
So….. as we start the week of Thanksgiving, I hope you are able to be TRULY thankful because we ALL have a gift. When you find moments of annoyance or anger in the preparation and execution of your holiday gatherings, find Kasen’s perspective. Find the things that surround you that you are so blessed to have. Find a fire for life and do the things you love. And if you have a few extra prayers, please remember my brave kiddo 🙂 (And if you’re a Winterset parent, he wants to keep it quiet from his classmates so he’s not “different”)
A few people I want to thank:
HS Winterset Wrestling coach Ryan Jensen: Thank you for your research on goggles and for being there with hope while our hearts broke.
JH Winterset Wrestling Coach, Ryan Breeding, for making sure he is as safe in the wrestling room as possible.
His partner, Abe (and his dad) for helping us test out numerous goggles.
Alex Sovel, Michigan State Wrestling Champion for sharing with us the goggles and headgear that worked best for you! Alex and Kasen have the same disease. Read Alex’s story here: http://highschoolsports.mlive.com/news/article/5434288919092644359/alex-sovel-risks-the-chance-of-blindness-when-he-wrestles-becomes-state-champion-anyway/
Indiana State running back, Titus McCoy, for telling Kasen never to give up what he loves and for letting him know he can do anything he puts his heart into. (Titus and his brother both play division 1 ball with the same disease.) Their mom, Amber, for the beautiful texts about the mom guilt that only she would understand.
Our family and friends are the best. We are thankful to you all for the love and support 💜