I Know

I am realizing that the comments of mostly acquaintances to Clara’s disability are making my skin thick, as I no longer cringe or heat up in anger. I also realize I am hearing comments that I will be hearing for the rest of our lives.

The latest one came before the holiday break. One of my coworkers had sent a Christmas poem to the entire office. I appreciated her sentiment and so I sent her a warm reply thanking her for giving me reason to smile. Her response back was to let me know she often thought of me and my Down syndrome child, and that she knew it must be hard on my family. I was proud of myself as I politely informed her of what a joy Clara is and I told her I wished she could know her so she would understand her disability was in no way a burden to my family.

The people who say these things don't know. As I stated a few months back in a newsletter article for our local Down syndrome organization, a developmental disability does not make life worse, it makes it different. It seems that those of us raising children with special needs are the only people that really understand this.

I work in social services, and on a daily basis I interact with a slew of interesting people. Today I talked with one who hugely impacted my day, and possibly my life. I was assisting this client over the phone and our exchange was taken off track as an intimate conversation was shared between two people who know.

Her daughter is in high school and has an intellectual disability. She shared advice with me and she shared difficulties, such as not being able to work because there is no before and after school care for her daughter. Her daughter is too old for child care centers but too young for adult day care. I was seeing my future as she shared her dilemma, as I, too, am a single parent.

Then she talked about how fortunate we are and I sighed a breathe of relief. I have at times wondered if Clara and I are in a honeymoon phase of disability, meaning horrors lie ahead. Do I find beauty because my daughter isn't even quite two yet? Will I someday see her as a burden and long for freedom? I can't imagine either being true, yet this is a fear that sometimes bubbles to the surface.

Then my client said, “Maybe you know this already, and I didn't learn it until she (her daughter) was five, but we are blessed.” Tears streamed down my face as she continued, “It takes some people years to know it.” I've known since Clara was born. Then she spoke my words, “Having a child with special needs only makes life different. And it’s so beautiful. My daughter is beautiful. I wish people knew.”

She shared a story I'll never forget. A couple of years back one of the boys at the school her daughter attends had been voted king (of something; of what is irrelevant). As king he was to choose a queen and he chose this client’s daughter. She stated he went on to be interviewed on one of the local news stations and he proudly revealed that by selecting her he knew that it would be an opportunity for her that she could remember for her lifetime. More recently, my client saw the young man at their local Special Olympics where he approached them and congratulated her daughter for winning an award. She pulled him aside to thank him for choosing her daughter as his queen a couple of years back, but she also told him, “In 40 years my daughter isn't going to remember who you are. But, in 40 years you will still remember her.” She said, “That was a good thing that you did for my daughter but I believe the experience was even better for you and I think that someday you're going to realize that.”

I don't know why our society understands so little about people with disabilities when there are so many. I know just as few years ago I, too, was in the dark. But, I hope when I share stories of Clara, or my experiences with others, I hope that I enlighten someone—or at least peak their curiosity. I'm living a wonderful life and I have four uniquely different children as evidence. I don't regret a single one of them, nor would I want them to be anyone else.

A good friend of mine told me not too long ago that Clara was lucky to have me for a mother, which I took as a compliment, and then she continued, “But, I can tell that you think you're the lucky one.” Again, I suppose I can take that last comment as a compliment and not try to over analyze it too much because, you know, I know I am the lucky one.

Happy holidays and I pray God blesses you.