Koy and Kadyn were born on a Friday, April 17, 2009. Ryan was over the moon to be having twins and I wanted as many kids as God would give me, so I could hardly contain my excitement. The pregnancy had been almost perfect and I was very proud to have kept my babies safe until they reached full term. Koy weighed in at 6lbs 8oz and Kadyn 5lbs 15oz. Ryan and I loved them before they were born and even more once we kissed their sweet faces. Delivery, recovery, introductions and first feedings were seamless. I was in a blissful euphoria; in total and complete awe of the fact that these two beautiful humans were mine and I had reached my number one goal in life: I was a mom. All was right in my world.
Within the first few hours Ryan noticed that something was a little off with Kadyn, and when visitors came into the room Koy was snuggled by others while Ryan held on to Kadyn. The twins were with us at all times unless they were with the nurses for quick daily checks, and things seemed to be going well. Then we noticed Kadyn’s feeding began to slow and she was constantly cold despite the master swaddling we had learned. The day we were scheduled to go home the nurses took Koy and Kadyn down for their final checks. Koy came back promptly as usual, but Kadyn did not. She was gone so long I had to call the nurses station to see what was going on. They explained that her temp was too low to return her to us so they were warming her and she would be back once her temp was regulated.
This began the descent of Kadyn’s health. Her body temperature wouldn’t regulate on her own and she was hardly eating. I wanted to believe she was ok so badly that when we were allowed to take her home, despite her having to have her head, hands, feet, and body completely covered and swaddled to keep her at an “ok” temp…I said ok. My husband and mom have since told me how shocked they were at my oblivion. The twins were home less than 12 hours before Kadyn was checked back into the hospital for vomiting and hyperthermia. The next several days was what I would compare to as a hazing period. We were slowly being introduced to what would become our new normal…our new life. Test upon test upon test, needles, prods, pokes, incubators, questions, results bringing new questions, more needles, more tests, and, ultimately, a diagnosis.
7 days after our twins were born we were told Kadyn had cystic fibrosis.
In a matter of seconds the life we had dreamed of and envisioned in our minds… the life we were expecting to live… had been turned upside down and inside out. I remember my mom and mother-in-law were in the room and the doctor had tears in her eyes as she delivered the news. I was holding Kadyn and kissed her incessantly on the forehead thinking about how I would tell Ryan who was home with Koy at the time. I also distinctly remember my body stiffening, my chest swelling and the strange calm that came over me. I knew immediately Kadyn was going to be ok. She would actually be more than ok for however many days, months, years God blessed us with her and Koy because they were ours and our love for them would make it ok.
I remember telling Ryan and seeing his heart shatter right in front of me. We were two people coming from two completely different life experiences. He lost his mother and best friend to cancer at 18 after watching her suffer on and off for most of his childhood. I had never experienced such loss and in my mind it was unimaginable.
As differently as we processed the diagnosis one thing was clear…we were blessed with two incredible children to love and we would do everything in our power to fight this horrendous disease.
Shorty after the diagnosis I sent this text to our family and friends:
Hey! I just wanted to reassure you that Kadyn is more than ok! She is such a strong little girl- it is amazing! We all have to be positive about this! God does not give us more than we can handle and he knows she is a little one that will not let a little thing like this stop her! She is bright eyed this morning and very warm! This is not a punishment, there is definitely a reason she has it! Maybe she will be a champion for cf. We will wait and see what spectacular things she is meant to do in life! In the mean time we are not telling her that she has it- don’t want to give her an excuse to complain :) Please don’t worry!! When you see her you will know immediately that everything will be ok! We love you!
We quickly realized that just because we envisioned life one way didn’t mean that the new path we’d been given wouldn’t also be wonderful. It would just be different. It was going to be all about our PERSPECTIVE.
Kadyn is now ten years old. In those 10 years she has been hospitalized over 30 times, had numerous PICC lines, 6 surgeries; a cecostomy tube placed and removed, a g-tube placed for nighttime feeding,10 bronchial scopes, and a port implanted for easier administration of IV antibiotics.
Kadyn takes over 30 pills daily, does hours worth of breathing treatments/chest therapy each day consisting of 3-5 inhaled medications each treatment. Her life is not easy, but this is the life she has been given and she knows what it takes to stay healthy. Kadyn loves and LIVES life. She is realistic, mature and wise beyond her years. We look to her a lot because in the big scheme of things her viewpoint and outlook is genuinely the most positive. Kadyn is a perfectionist and loves to challenge herself. With all she has endured she makes no excuses and never wants anyone to take it easy on her.
I know the first thing that comes to the minds of most people when they see children who are suffering with illness or going through hard times is that it is unfair. We truly believe life is not supposed to be fair and everyone has their “something”. For some it is more obvious than others, but we have to understand that there is a purpose for it all. There is so much goodness in every life. When we are faced with what seems like impossible circumstances we really have two choices. We can face the obstacles head on and reap the rewards of overcoming, or we can give in and let them harden us.
Kadyn chooses to find the best in each day. She has learned that good things come from hardships if we are able to shift our mindset and look for the blessings in the here and now, instead of dwelling on the what ifs that might be around the corner. And perhaps most importantly, Kadyn has taught us to never take a day, a moment or even a breath for granted.
Please don’t get me wrong, we have often been devastated, heartbroken, terrified, and brought to our knees watching Kadyn endure the painful reality of cystic fibrosis. But, we have committed to live life positively, faithfully and presently, because we know if we were to stay in the trenches and sadness that CF can bring, we would miss the beauty, love, and joy there is to be celebrated in each and every day.
Throughout our journey with CF, we have been incredibly blessed with the support and love of our family and friends. Immediately after Kadyn’s diagnosis our friends and family wanted to help in any way they could. We created Kadyn’s Krew in 2009 to spread awareness and raise funds to find a cure for Cystic Fibrosis. In just 10 years our Krew has raised over 1 million dollars for the Cystic Fibrosis Foundation. When we said maybe Kadyn would be a champion for CF we had no idea how true that would be. Our strong faith in God and confidence in the medical advancements being made give us hope for Kadyn’s future.
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