Early on in our journey, our son, Coleman, received a rare Chromosome 13q deletion diagnosis. So rare that there wasn’t very much information on his prognosis or developmental outlook. Medical journals only depicted worse case scenarios. Medical professionals only communicated what would never happen. No one could tell us exactly who Coleman would become or what he would be able to do. His abilities and milestones wouldn’t change how much we loved him, but I felt that if I could just know what the future would look like, I could prepare my mind and heart for any difficulties he would face.
As Coleman grew, so did his delay in meeting milestones. All of our friends’ kids who were the same age seemed to meet these important stages with ease while our boy took his sweet time. Knowing better and instantly regretting it, I would always compare him to his peers. That ultimately would break my bruised and battered heart and extinguish any bit of hope I had of him living a “normal” life.
Because of society’s definition of normal and its treatment of those that stand on the sidelines, I equated a normal life with an easier life and who wouldn’t want life to be a little easier for their child. As I mentioned earlier, we love Coleman just as he is and wouldn’t change him for anything in the world. It was just the fear of the unknown. It was the grief of life not looking like we had originally planned.
Then something amazing happened! I realized that the world’s standards aren’t one-size-fits-all and don’t dictate a person’s worth or quality of life. With this revelation, I amended my expectations: the expectations of myself as a mom and of Coleman. They weren’t lowered or lessened in any shape or form because high expectations can promote high achievement but they were different now. Instead of trying to meet the goals everyone else thought Coleman should meet in their timeline, we gave Coleman the lead to move at his own pace and on his own path.
As parents, we continued providing Coleman opportunities to learn, grow, and be challenged, but we didn’t use his progress or lack there-of as a measure of success or failure. All pressure to “achieve and exceed” were removed, and we gave each other permission to truly live this beautiful life we were given to the fullest. Happiness isn’t contingent upon living up to a standardized checklist. It isn’t tied to the expectations of others. It is a daily choice to find joy regardless of circumstances. To see the good when everyone else is spewing negativity.
In typical Coleman fashion, he has continued to do amazing things and surprise us each and every day. The child we were told would never walk due to low tone, now runs EVERYWHERE. The child we were told would never talk, communicates using American Sign Language and a few spoken words. The child we were told would never…continues to do. But even if he doesn’t, he is still loved beyond measure and a remarkable, irreplaceable contribution to our family, community, and world.
Coleman has taught me to love without condition, appreciate the little things in life, and to literally stop and smell the roses (even the ones in the Lowe’s Garden Center, which are his favorite). I’m so thankful that I get the opportunity to be Coleman’s mother, and I can’t wait to see what else he teaches me in the future.
Never say never and remember there is always something worth celebrating!
Jada Babcock lives in Breaux Bridge with her husband, Mike, and 9-year-old son, Coleman. She works as a Parent Guide with the Louisiana Guide By Your Side Program, which provides parent-to-parent support for families with deaf or hard-of-hearing children. She is also the author of An Exceptional Life: A Story of Faith, Missing Chromosomes, & Unconditional Love.