I posted recently about the friends I've made in the Down syndrome parent community - the moms slightly farther along the road who bring perspective and hope to my life. We chatted this week about the awesomeness of older kids who might not fall into the "really high achieving kid with Down syndrome" box.
Regardless of a child/young adult's skills, life can still be good. But what about the dreams we have as parents? So I threw a question on my Facebook wall - what makes life good?
Down syndrome doesn't eliminate most of what was suggested. The suggestions were made by friends and family of different religious beliefs, some of whom have a direct relationship to someone with Down syndrome and some of whom do not. Travel, family, wine? Nothing about Down syndrome eliminates those from a life. Having children is uncommon (though not unheard of) for adults with Down syndrome, but every other answer my friends shared is absolutely possible for adults with Down syndrome.
The responses from my friends involved relationships with people and enjoying life's small moments. Sunsets, pets, hugs.
I have those dreams for both of my kids.
Down syndrome doesn't mean giving up a dream.
I don't know anyone with Down syndrome who dislikes their life.
OK, so when Ellie got in big trouble the other day, she wasn't really happy with her life, but it was also totally her own fault. She was happy again later.
But isn't that normal? Good and bad days? Screwing up as well as succeeding?
The great thing about having a baby with Down syndrome is that you have a baby. A little person who may take on some of your interests or habits or sense of humor. And regardless of the reading level the little person attains in high school, your child is your child, unique and funny or shy or silly or stubborn or carefree.
Yet occasionally, I hear parents confronted with, "Just wait 'til they're older!" I've even heard it addressed to me.
Ellie won't always be cute and little. But the parents I know of older kids have a comfort level with their children that I wouldn't have dreamed possible when we got Ellie's diagnosis. I do expect Ellie to engage in age-appropriate activities. I have heard of new parents offered the encouragement, "Your kid will believe in Santa forever!" No. My kid won't be a kid forever, and we will tell her the truth about Santa and ask for her assistance making Christmas magic for her little sister when the time comes. I don't know if Ellie will be a great reader or writer. I do know that she will be her own person and that she'll be awesome... or a pain in the butt.... or sweet.... or a grumpy teenager... or whoever she will be. Down syndrome won't define her value to our family or this world.
New parents, if you only ever read one thing I write, read this:
Listen to those who have gone before you. Listen to those with whom you share a parenting philosophy. And then live your own life and raise your kid. No one who has warned me, "Just wait until she's older!" has raised a kid with Down syndrome, so I'm not obligated to listen to those people and neither are you.