Colton’s Story


As told by his mother, Katy.


I am a planner, and I always have been. Most things in my life have gone precisely according to plan, except for the most important experience that I have known. On October 20, 2014, I had no idea that our family’s world would be turned upside down. My husband and I were pregnant with our first and only child, and on our way to our anatomy scan. For most people, this is where parents find out the “big” question of whether the baby is a boy or a girl, but for us, we found out so much more. Our sweet boy was going to be born with a severe congenital heart defect that would need several surgeries, but the doctors were fairly confident that it would be able to be remedied. My husband and I decided that as long as our baby was with us, we would fight alongside him.


On March 6, 2015, Colton James Key arrived screaming, into the world. He was six pounds one ounce of pure joy, and he was certainly a fighter. When he was just three days old, he had his first heart surgery. Our family spent thirty-six days on the Heart Floor, and was released to go home. For the most part, we lived quite normally at home (amidst feeding therapy, cardiology, and ophthalmology appointments), but we knew we would have to bring Colton back for an open-heart surgery when he was around 9 months old. On December 4th, we did just that, and the heart surgery went very well.  His heart was repaired, and all we had to do was support him while he recovered. Except that he never did. The heart, which was everyone’s main concern, was functioning well, but his brain was not. Within a period of about three days of neurologists and CT Scans, we were told that our chatty and smiling boy would never crawl, walk, and would most likely be non-verbal due to a very traumatic brain injury. He began struggling to breathe, and we decided on do not resuscitate orders and hospice care.


I honestly thought that when Colton passed away on January 1st, with his father and I snuggling him on the hospital bed, that life would never be joyful again. How can you find joy and happiness when you are deciding on hospice and funeral arrangements for a child? This is something that you only do for people who are older than you, who have lived a full life.


My hopeless thoughts continued until I was at his funeral visitation. Not many people met Colton (due to keeping him germ-free), but over five hundred people came to his visitation, with many staying for his funeral service. That’s when I realized that your impact in life is not measured by the length of your stay, but in how you live your life. Colton lived every day with immense happiness and was full of life to the very end.


I knew that in my life, something had to change. When you are a planner, everything is very controlled and perfect, which can also be very boring. Colton taught me so many things, but the importance of perfection is not one of them. He has set me free to show not only the beautiful side of life, but also the messy side.  All of the things that I worried about in the past:  Germs, flying in planes, whether my students can pass a standardized test to perfection, have gone out the window.  It’s a very scary, but freeing feeling.  Having a plan can be a wonderful thing, but sometimes it’s good to walk, or better yet run, into uncharted territory.


I’m still very new in my grief, but I want others to know that you do not always have to be strong.  You do not always have to cry. You certainly do not always have to feel happy, or be in control.  Just be you.  Wonderful, beautiful, imperfect you. The rest will come as times goes on.


Katy Key is a wife to Jordan and a mom to her angel Colton, in heaven.  She loves teaching her 3rd graders, spending time with family and friends, and watching all IU sports.  Her passion is to raise awareness for congenital heart defects and enjoy this imperfect life.  You can follow her on Instagram or Facebook.