Denial

“Truth is stranger than fiction, but it is because Fiction is obliged to stick to possibilities; Truth isn’t.” ― Mark Twain

Sometimes I binge on blog reading. When I’m really in a mood, I also read the comments. The other day, I was reading a blog entry by a mother explaining her love for her child with Down syndrome and some of the wonderful qualities her child possesses. As I was scrolling through the comments, a few people lamented her positive attitude, complaining that it’s not positive for everyone. A few others accused her of being in denial about what the journey with a child with a disability is really like.

It made me start to wonder – do people think I’m in denial? Do people think that this journey must be much harder than I’m portraying. Do people think that I’m really sitting in my house depressed and heartbroken?

What is the truth? I suppose with social media and blogs, we are able to paint whatever picture we want of a situation. I was in public relations. While I always told the truth, I suppose there were moments when I might have painted a much brighter picture than I probably should have.

Before I tell you what our truth is right now, let me explain something very important. People are as different as snowflakes. Every single person on this planet is unique from all the others. My friends with twins can attest to the differences, even though their DNA is identical.

If every single person is completely unique, then every single situation is completely unique as well. My journey with my child with Down syndrome will be very different from my friends’. The ways in which the third 21st chromosome affect a person are infinite.

So what is the truth? The truth for me, and I can’t speak for a single other person in the world walking my path, is that our life is good. I’m not going to say that there aren’t moments when I get sad for my daughter. When I see another child walking easily or talking a mile a minute, I get a twinge of sadness. When I think about how other children don’t need blood draws every six months or multiple therapy appointments, I feel sad. Of course every single moment is not awesome.

But when she belly laughs, gets into trouble, tries to put on her clothes (because she loves clothes – little fashionista), scribbles, plays with her toys, pesters her brother, or gives hugs and kisses, I’m reminded that she’s just a little girl. I’m constantly reminded of her sweet uniqueness.

But this is my truth. This is my reality. I speak for no one else with a child with a disability. I think it’s dangerous to say that everyone will have the same experience. It’s just not the truth. The possibilities are endless.

I also can’t say that raising a child without a disability will be great either. I can’t promise that the typical child will be easy to raise. I can’t promise that they will always listen, never talk back, get straight As, go to Harvard, or take care of you when you age.

I can’t promise a new mother of a child with Down syndrome that her journey will be wonderful. I can’t promise the mother of a typical child that her journey will be wonderful either.

The only thing I can be remotely sure of is that life will go on.

God willing, the sun will rise in the morning.

And when each new day comes, I remember that I need to decide what to do with the time that is given to me.

“The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.” ― Maya Angelou 1928-2014