I sat talking with a patient about a year ago. Her 36 year old Down Syndrome son had just tried to sneak a soda and we were discussing the challenges our children faced as well as what we faced as parents.
“Did you cry when you found out?” She asked me. “I did. I bawled for days. I didn’t know what else to do.”
I felt bad telling her the truth because the truth is, I didn’t. I didn’t cry leaving the developmental pediatrician’s office that day. I left feeling relieved.
“Honestly, no.” I hung my head. “I felt relieved. I spent 5 years feeling like I was failing as a mom that I was so happy to hear that this wasn’t my fault.”
It still sounds self indulgent.
But the truth is, by the time she was diagnosed I had cried a lot.
I cried every time I couldn’t get her to eat as a newborn.
I cried when I knew her very rigid schedule was disrupted because I knew I would spend the next 48 hours with a baby that couldn’t cope.
I cried when her temper tantrums seemed to never end.
I cried when the next one started again 20 minutes after the last one stopped.
I cried when we couldn’t get her to eat.
I cried when she would bite me and pull my hair.
I cried when we exhausted one therapy and we still weren’t “normal”.
I cried when I made the appointment for yet more therapy or to meet another specialist.
I cried a lot.
And I still cry when she struggles.
But the truth is, the tears come from struggle, not a label. These days she is a happy kid. She’s starting to make friends and finding herself in hobbies. She excels in school and radiates with her accomplishments. Her diagnosis doesn’t upset me because it doesn’t define her and it allows us to deal with the tears constructively. And that is something to celebrate.