Diagnosis, Disability, and Finding your Tribe
Parenting children is hard. That isn’t a secret. Parenting a child with a disability has even extra challenges that shake us to our core.
I have a daughter with special needs and numerous learning challenges. When she was almost three, she received her first diagnosis of Childhood Apraxia of Speech, a rare and severe speech disorder in children. That was the beginning of many a “dark day” in my parenting journey with her. I remember putting her in her car seat, tears in my eyes as her bright blue eyes smiled back at me and seemed to ask, “why are you crying?” I sobbed that day. I cried for so many reasons. Fear, uncertainty, guilt and confusion. I texted a friend I was devastated, and I truly felt like I had the wind knocked out of me.
Slowly I found a community of parents who had children with apraxia as well; and I started to feel hope again. I started to believe what was possible for their children was possible for mine as well. I found my tribe, as I like to say. All these parents understood me, my daughter, our challenges and the significance of our small successes! I discovered there was a walk to honor kids like mine and spread awareness. I connected with others in my community and no longer felt alone. I no longer felt devastated but instead felt blessed by the friendships I had formed.
My daughter has went on to receive multiple and additional disabilities since that first one of apraxia. I can’t lie. Each new diagnosis, report, or low test score feels like a punch in the gut all over again. However, we have our people now. We have our tribe. We have others who understand. They understand that sometimes you are in such a state of deep grief you can do nothing else but cry and cannot face the world that day. We also know that stage doesn’t last, and when a member of our tribe is down, we will rally around them and be ready to pick they back up when they are ready to face the day again.
I learned that some of my darkest nights were followed by the most glorious sunrise; and I found that sunshine in the community around us. No one should suffer alone. No matter the struggle, we should all find others who understand our unique situation in the world. For us, community was the light that found its way into the dark tunnel of grief and showed us the way out.
