Why We Do What We Do

I have been on the brink of burnout for a couple of years now. I’m exhausted. I’m stressed out. I can barely keep up with all of my obligations. I feel the weight of the world on my shoulders.

Most of us feel this way though, right?

The thing is, I could easily let most of my obligations go … I could yet I can’t. And I only recently figured out why.

I’ve been appointed to my city’s Community Services Board, which oversees the use of funds to those using mental health, intellectual disability, and substance use services. I serve on our School Board’s Special Education Advisory Committee. I am a mentor parent for our local Down syndrome association. I advocate for disability issues locally, regionally, and nationally. These are all volunteer positions that take up a lot of time. I am also a mother to 3 young children, married to a devoted father who works a lot of crazy hours, and I work from home.

All of this is simultaneously rewarding and draining. When I’m leaving my house for yet another meeting, I turn to the door to see my children screaming and crying for me to come back and my heart breaks. When I get to the car I sit and take a deep breath and remind myself why I am doing all of this.

I am doing this so new parents don’t feel the devastation I felt when my oldest son was born with Down syndrome. I am doing this so other parents don’t have to explain to their families why it’s not okay to use the word retarded during Thanksgiving dinner.

I am doing this so children with disabilities are no longer segregated in our schools. I am doing this so adults with disabilities can find meaningful jobs. I am doing this so my son and his friends can live independently and get married and live their lives just like the rest of us.

I am doing this so in the years to come, other parents won’t have to. I am doing this to make positive, lasting, universal change.

I am doing this so people with disabilities have the same basic civil rights as the rest of the citizens of this country.

So in the spirit of family involvement, I ask you, what are you doing?



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