I finished my conversation with the doctor, hung up the phone and just stared at my desk and chewed at my nails. I started to dial Amber several times, but never hit send. I couldn’t bring myself to tell her. I couldn’t hold my composure, anyway. My mind was moving too fast. I had to think about how I was going to break this news.
I walked in the house and heard the faint sound of the shower. Cailyn was napping and Amber was just getting to relax. I knew that was a symptom of a rough day of therapy. I tip toed through the hall and into our bathroom.
“Honey,” I said, slightly startling her in the process “I talked to the doctor, today. Our results came in.”
She slid the door open a crack and looked at me. I think my face told the story, but I continued.
“The mutation they found in Cailyn’s genes…” I paused, looked at the floor, and took a deep breath. “They found the same abnormality in your DNA.”
She looked like she wanted to say something back, but just began sobbing. I jumped towards her just in time, as her knees began to buckle. I caught her and lowered her to the seat in the shower. She just sat there weeping with her head in her hands.
I can’t tell you the number of times I’ve held my daughter and apologized. How I felt that I had let her down and was, to some extent, culpable for the battles she would face. I felt responsible for not researching vaccines enough, for wrestling with her too much, for letting her watch TV too long while Amber was at work, for not getting her around other children, and for not pressing for an emergency c-section during her traumatic birth. I wondered if the trigger could be the food and water I gave her, the house I chose, or the bright, loud toys that I bought her.
Guilt is the terrorist of an Autism diagnosis. No one knows what causes Autism, but we know it is part genetic and part environment. In a parent’s mind, that translates to “I’m to blame.” In the heat of a tantrum, sweat pours down your forehead and your heart beats to the words “your fault…your fault…your fault.” Every time you watch her in a corner, a part of you wonders if you put her there. You watch her struggle with other children and you tell yourself you’d do anything to make up for your mistakes. You just want her life to be easier. She deserves so much better.
The truly dangerous part of guilt is that it breeds and forms a downward spiral to pity and depression. Every moment spent dwelling on an unchangeable past, distracts from a fragile present. Regret prevents progress, which spawns future regret. This isn’t a unique feeling for families fighting Autism. It creeps up everywhere in life, which is why I feel like I have to share what I’ve learned from this battle.
I’ve found to overcome guilt, I have to first remind myself that I have done everything possible for my family given my knowledge and ability. Second, I commit to the mindset that some things in life are out of my control and Cailyn’s life is meant for more than just my comfort. Lastly, I have to admit to making mistakes and use it as motivation to move forward. By giving my present self completely to my family and pushing Cailyn to be more than what others expect, I live today in a way that will make me proud 5 and 10 years from now.
We’d later see a geneticist, only to be informed that Cailyn and Amber’s specific genetic mutations were of little to no significance. In hindsight, it wouldn’t have mattered. Parents aren’t perfect, be it in action or DNA strands. We don’t need to be. Our course is plotted, not by a single event, but by a lifetime of commitment to the present and a twist of grace. This realization is what puts me to sleep at night and lifts me from bed in the morning.
Someday, you will see the evidence of this in Cailyn.