Turning Scars Into Beauty Marks
By Emily Kohlman
My husband and I met at four years old at Johns Hopkins Hospital in Baltimore, Maryland, scheduled to have the same surgery within days of one another. Cameron called Ohio home. Wisconsin was mine. Both of us were bound to a hospital bed, introduced by the man who gave us back our health and gave us one another, world-renowned surgeon, Dr. Robert Jeffs. We share a birth defect called bladder exstrophy. Back in 1995, our parents could not have guessed this defect would abundantly reward us with a lifetime of blessings.
In 2006, after many years of friendship, we fell in love. I might argue I fell in love with Cameron in 1995, the first time he kissed me at the Ronald McDonald House. Our love was endless, relentless even. People thought we were foolish through high school in a long-distance relationship, counting down the moments until we could start our lives together. We proved each of them wrong. On November 21st 2012, Cameron got down on one knee, pulled an engagement ring from his cowboy boot and asked me to be his wife. In 2015, we had the wedding of our dreams, bought a home and continued to fill our lives with everlasting love and laughter. The days were getting better and better. I thought these would always be the best days of my life until October 1st, 2016.
Despite thinking we were ready to start trying for a baby two months prior, nothing could have possibly prepared me for what was about to happen. I realized I was a couple weeks late and took a pregnancy test while Cameron was at work. Part of me wondered what I was thinking, taking the test alone. You know how the couple usually takes the pregnancy test together, impatiently waiting and staring at the stick changing colors like a chameleon on the bathroom sink? DO that. Not alone. As I suspected, a positive sign appeared after what felt like hours of waiting. I was undoubtedly excited, but it was also terrifying. So many questions pulsed through my mind as I impatiently waited for Cameron to return from work. Would our baby have bladder exstrophy? Cameron’s sense of humor? My terrible vision? I pondered every scenario until the workday was over.
When I told Cam, he shared in my excitement tenfold. As any new parents, the questions came. Especially that lingering question we couldn’t ignore: Would our baby have bladder exstrophy? There is not a known case of both parents with bladder exstrophy having a baby together and little research to prove genetic connections. Scary, right? Absolutely. We found the best doctors and started to plan for the healthiest pregnancy with a special emphasis on finding that baby’s bladder. First, our doctor thought we could visualize the bladder at 14 weeks. (Visualizing the bladder via ultrasound would ensure it was in it’s proper place-meaning no bladder exstrophy.) No luck. Then came week 17… 19… and finally 21. It was getting discouraging quickly. We emotionally prepared ourselves that our baby would have BE, and that was okay.
I will never forget January 10th, 2017. The day before I turned 26 and newly 21 weeks pregnant. The ultrasound technician slid the transducer over my growing belly when our doctor told him calmly, “Stop. Right there. There it is.” Comfort flooded every ounce of me. The bladder. We found it… ON THE INSIDE! This was a big deal, not only for us, but for many families with lingering questions for their BE kids, too.
The next 16 weeks passed quickly with nearly zero complications. The few I encountered weren’t even BE related… unless you count having to pee about every 15 minutes. (No, really… Every 15 minutes.) On May 23rd, at 37 weeks pregnant, we had our routine check-up, prepared to deliver via scheduled Cesarean section the next week. I waddled into the office swollen and uncomfortable. Fitting in with a family of beluga whales was not far from my reality. To shorten the long story, my doctor made the call to deliver that day. We drove to Cleveland Clinic, and eight hours later with the help of my obstetrician and urologist, our princess made her debut via C-section. Everleigh Grace weighed in at 6 pounds and 4 ounces of absolute perfection.
The last five months have been nothing short of amazing. As I sit here and reflect on my life thus far, I’ve said it before, and I will say it always… Bladder exstrophy has rewarded me in more ways than I can explain. There have been times I called myself crazy for saying this. Times where I thought I couldn’t handle one more bladder spasm. Times when I looked at my scars in the mirror believing no one could ever love me. “This too shall pass.” My mom always reminded me. It seemed impossible to convince the shaken 15-year-old me it was just a phase. That girl didn’t think she had a place in the world.
Eventually, I found who I was and wanted to be with Cameron helping me up each time I doubted the reflection staring back at me. I could never repay him for pushing me to believe in myself, helping me to confidently walk through life and reminding me to never give a damn what people think. With my growing confidence, I found an abundance of strength in sharing my struggle. Teaching other people to fearlessly be whomever they chose to be pushed me to better myself each day.
No one is perfect, nor should they be. There are still nights when I’m singing my baby girl to sleep and think back to those days wondering how I deserve this. There was no dream of mine that led me here. Fate awarded me with great things. Working fiercely towards my goals rewarded me even greater. The negative will try to consume you, if you let it. For those moments, I remember one of the greatest gifts my mom ever shared with me: Garth Brooks. One lyric always radiating in my mind, “…Life is better left to chance. I could have missed the pain, but I’d of had to miss the dance.”
So, dance. Bust out every move you must to get through this crazy roller coaster of life. It’s pretty incredible.
© 2016 Emily Kohlman & Courage to Shine™