Monday, July 29, 2013


This post originally appeared as a guest-post on The Narretto Family Blog on July 25th.  Re-posting here.  Thanks for the opportunity, April!
When April asked me to guest blog here this week, I thought, I have absolutely *no* idea what to write.  And, as my fingers grace the keys of my laptop even now, I still have absolutely no idea what to write.  My house is still and quiet, my daughter, Samantha sound asleep in my bed, where she crawled in after creeping out of her own room at 5:20am, my cats sitting on the table, an occasional paw batting at the cursor as it moves across the screen, but otherwise behaving pretty well.  This is the best way to write. 
I could write about myself, my life, what it's like to have a daughter with Down syndrome.  A little clichéd, as it's been done so many times before.  I could write about the desperate need for funding and research for Down syndrome, how urgently we need to get answers and treatments for the medical issues that so often plague our children when they are born, as they grow, mature into adults, and age mercilessly early.  I could talk about our birth story, the process of becoming who we became as the result of the diagnosis we received, but I'll leave that to the new parents - it's now their story to tell. 
Thinking as I type, I have come to the conclusion that I should write about my hopes and dreams for my daughter's future.  Pipe dreams, some of them, perhaps, but dreams nonetheless.  The possAbilities are endless.

When Sammi was born, a social worker came to visit us in my hospital room, bearing brochures and information.  One of the booklets, from our local Down syndrome association, held beautiful color photos of people with Down syndrome sitting at desks in classrooms, playing sports, laughing with friends.  Every stereotype, every misconceived notion that had entered my head over the dark and painful hours just prior to that moment, began to weaken, to thin, and eventually to shatter in a surge of joy and hope.  I'd had no idea...
I know, now, how important dreams of the future are.  How important they are to remember every day, to reach towards, to begin to grasp, to meet and achieve.  We've already had so many come to fruition - countless, really.  And, with every one, there's a whole new future to look towards. 
From where I sit now, the future looks like middle school and high school acceptance and popularity, continuing much as it does now.  This is a hard one - I feel like pretty much no one is accepted in middle school.  And, with the way things are now, pretty much every child and teacher in Samantha's school knows who she is, says hi to her as she passes by in the hall, comes over to greet her, excitedly, when we see them out in public.  Will that change?  Probably.  Do I hope that it won't?  Absolutely.
I dream of sharing stories with her, of giggling and devouring popcorn and watching movies, of spa days, of girls' weekends away for museums or concerts or shopping, of e-mailing or texting from school or work.
One dream of the future involves public speaking.  I want so, so much for Samantha to be a strong self-advocate, speaking for herself and others like her whose voices may not be as strong, showing the world the value and worth of people with differences, making a name for herself in the community, in the world, changing minds.  The kid certainly likes to talk, but will she speak in a way that will make someone want to listen?  Will she be able to build well-crafted, well-thought-out sentences to tell her story, to hold one's attention, to make a valuable point?
I dream of a day when she will rightfully yearn to spread her wings, to soar, to grow into an independent woman, go to college, to get a job, to meet a man and get married, to move out (but not too far...), to live safely, happily, securely.  To drive?  Perhaps... 
I dream of a day when I can accept all of that, to be comfortable myself in knowing she's fine, she's responsible, she's safe.
But for now, at the tender age of 7, I can relax a little, give her the tools, encourage her, watch her grow.  Like a flower, she blossoms so beautifully. 

1 comment:

Kathy said...

My daughter is popular in middle school, just as she was in elementary school! I have been pleasantly surprised about this. I think in part it is because she is a girl... the parents of boys in her class seem to be much more concerned with bullying. Part of it is also because she is naturally sociable and non-threatening. Cultivating genuine, long-term friendships is a little harder though. I liked your story of the positive pictures you were given at the hospital. Unfortunately we got the outdated medical brochures. I could have used some really happy, positive pictures right then. It wasn't until I saw some that my own attitude started to change.