A child with a sibling who is disabled plays a special role in the growth of a family. Our son Cole is that person in ours. Here is his story.
Our family celebrated a joyous event last month. Cole, our 2nd son, graduated from college. His future is bright. He’s attending graduate school right now and we just moved him into his new apartment. For those who know him, he’s loved basketball since he was in the 1st grade and always had the dream to work in the NBA. He’s worked so hard to make that dream come true and is on track to make that happen for himself.
So, as I saw him walk across that stage, words cannot express all the emotions that washed over me. All my kids are special to me in their own unique ways, but today I’m going to tell you about Cole.
Cole is 17 months younger than his brother, Conner. We found out we were pregnant with Cole right around the time of Conner’s deafness diagnosis. Throughout my 2nd pregnancy we were in complete panic mode - going from one doctor appointment to another, getting Conner approved to receive his cochlear implant and just figuring things out what his diagnosis would mean to our world. It was a stark contrast to when I was pregnant with Conner. With Conner, Todd and I played music to him in the womb and took time to anticipate his birth. With Cole, I was just hoping to find time to take a shower and get some sleep.
Yet, when Cole made his way into this world, it was such a happy time. He was healthy and he passed his newborn hearing test with flying colors. In my eyes, he was perfect - such a happy baby.
Cole’s childhood was not what I would have hoped for him, however. We were constantly on the go when he was a baby, focused on Conner - driving an hour to and from speech therapy, doing occupational therapy, and more. I had to cut back at work and we scraped up enough money to share a nanny with our neighbors. Cole spent most of his days with the nanny in the car meeting me at various medical appointments. He only napped in a car seat. I was so caught up in my grief that I missed out on some important points in his early life.
Cole grew up not knowing a life any different than this. He was born into this wonderful but chaotic family life that consisted of doctors appointments, fundraisers for Usher syndrome, etc. When our youngest son, Dalton, was born with Usher syndrome like his older brother, Conner was thrilled - another brother like him. Cole, on the other hand, was upset by this news. It’s right then that I realized how hard it had been for him too. It hit me hard.
As the boys got older, Cole took on an important role in the family that I didn’t probably properly acknowledge or understand more fully until several years later. He and Conner went to the same schools and Cole played a mostly silent but important role in his older brother’s life. He turned on lights, held his hand, watched out for him at school to ensure people did not say mean things about him. He was there for Conner every step of the way. When his two younger brothers were born, this trend continued.
I honestly don’t know what I would have done without Cole. Not only was he a huge support for his brothers but as he got older, he became a respite for me as well. I tried hard to spend one on one time with him. I loved hanging out with him. It was my reprieve from deafblindness and all the worry. I enjoyed watching him play basketball and tried my best to take him places with his friends. I had missed the early years and I wanted to be there for him.
Through it all, I have always wondered if I did enough to support him. As Todd and I grieved, I’m sure he was grieving too. Did we talk about it enough as a family? Did we find ways for Cole to just be Cole - without the burden of needing to protect his siblings? What were the impacts of him not having a “normal” childhood? Over the past 20 years, I’ve thought about this often - wondering if I did enough and if he was happy.
Then I saw him walk across that stage to graduate and my heart burst with pride. The road wasn’t what we thought it would be, but it was our unique journey - it is his unique journey. I am so proud of the amazing man he has become. Today he frequently calls his brothers to check in on them. He makes an effort to spend time with each one of them separately. I see how he is such a good friend to his brothers and to his friends. He’s the first person to offer help if anyone needs it. He is kind, compassionate, empathetic, and caring. He’s also dedicated and more motivated than anyone I know. In my eyes, just like when he was born, he is perfect.
Everytime I go to a workshop that discusses the impact of disability on siblings, I am instantly brought to tears. As parents with children with disabilities, often we are so lasered focused on the needs of these children, the other siblings live in the shadows. So today, I wanted to recognize the important role Cole and his brother, Hunter, play in our lives. The world is a better place because you both are in it. Thank you for all you do. To all the siblings out there, thank you for being you - truly special in many ways - a true gift to your families and this world.
Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.