As we go through life we carry many labels and define ourselves and our purpose in life based on these labels. Those times in our lives when the way we define ourselves changes dramatically and are outside of our control, we find ourselves scrambling for purpose to this change. My husband Anson Smith and I met when we were defining ourselves as young graduate students at Boston College in August 2000. He was studying to be a teacher / soccer coach while I was training to be a psychotherapist. We married in 2002, the beginning of our definition of husband and wife, and began to think about starting a family. Many people loved to joke around about how our children would probably be basketball and volleyball players since my husband and I are both six feet tall and athletic. We were blessed with the birth of our first daughter Aubrey Eileen in July 2008, and began the Smith Family, defining ourselves now as Mommy and Daddy. We were overjoyed with this addition to our family but knew our family wasn’t complete. What we wanted most was for Aubrey to experience being a big sister and to see the love within our family grow.
In April 2010, we were overwhelmed when we received the news, “Its twins!”, but knew that whatever happened, that it was meant to be. However, building a family grew quite complex when a doctor appointment in November 2010 changed the universe for the Smith Family. At that appointment, we were told that “Baby A” had short long bones and the doctors were quite concerned. I googled “shortened long bones” more times than I could ever imagine and it kept coming to information about dwarfism. With every blog, article or post I read I felt as though I was in a dream state and completely numb. I thought, “This can’t be happening to two 6 feet tall, healthy and athletic people. Baby B is fine. How could something be wrong with Baby A?” My mind was spinning and it wouldn’t stop. The physical and mental stress I was experiencing brought the twins two months early on November 22, 2010. Yet another definition for us, parents of twins. Kylie Erin (Baby A) and Leah Allison (Baby B) were born and taken immediately to the NICU. This was a strange day for me. I wasn’t happy. I was filled with worry. I wanted to see Baby A. I wanted answers. “What was the reason for her shortened long bones? Are my preemie babies going to be ok,” I wondered. While in the NICU for 5 weeks, doctors ran tests to get answers while I studied Kylie’s shorter fingers, somewhat larger head, shorter arms and legs and just knew… she was special in some way. This kid was going to change my life and how I define it. I held her and prayed that whatever it was that she wouldn’t have medical complications and that her brain wouldn’t be affected. I began to bond with this beautiful, special girl. Whatever it was, we could get through it… right? I doubted myself. I worried, I cried. About 2 months after they were born, we finally got answers. “Kylie has Achondroplasia, she is a little person” the geneticist said while handing me packets about Little People of America and genetic information about how this random genetic mutation can happen to anyone. Again, I experienced shock but not surprise. The diagnosis was what I thought but I was uncertain I was ready to hear the confirmation. Anson held me and said that we are strong and she will be great because we are her parents. Another definition for us, parents of a child with Achondroplasia. For months I struggled with the diagnosis we had received and relied heavily on my husband for support. I continually asked him, “Will she be ok?” “Will I be ok?” “Will Kylie be able to survive in this active family who runs, hikes, etc?” “Will she run out onto the soccer field to congratulate her daddy after a win like her big sister does?” I remember one time Anson saying to me, “Some people don’t struggle in life but are they really living life without triumph and struggle?” I struggled for months but sprung into action mode to cope. I talked to other moms of children with Achondroplasia, joined Little People of America, found Kylie the best doctors for her condition and I began to evolve into a woman I never knew I could be; a warrior for my child. I began to love this child with every ounce of me and saw her addition to our family as such a blessing.
Three years later, tears still come to my eyes when I write about how my dreams of a family and for my children have changed. My oldest daughter Aubrey is now an active 5 year old who enjoys playing soccer, dancing and gymnastics while also fulfilling her big sister role! Leah is our most sensitive, intensely loving, active child who loves gymnastics and swimming with her sisters! Kylie fits right in as well and is a smart, determined leader, who loves to sing, dance, and participate in gymnastics. My girls are all very close and it is heartwarming to see how they love to play and help each other. Our family is unique and we do get a lot of looks when out in public. It used to bother me but now I actually embrace it. I love that our family can educate people by just existing. We have grown closer to family and friends after the birth of the twins and have found true love and support through others. Given that Kylie doesn’t walk as fast as the rest of the family, we have all learned to slow down a little and not hurry so much through life. We have become more adept at appreciating others for who they are on the inside, not just what is visible physically. We have met wonderful extended family through Little People of America. We knew our family wasn’t complete with one child but never knew how much twins and one with Achondroplasia would complete our family and change the way we define our lives forever! We embrace our definition as a Special Family and know that this has taught us so much more about each other and life than we ever dreamed possible and we love our new found purpose of educating others.
- Corryn Smith