No crystal balls

Have you ever wished you could see what the future would bring for your child? Will she be one to sing "neener-neener-neener" to her diagnosis? Will things crumble and leave her in a place you don't dare let your mind wander? We probably all wonder these at times...but do we truly want an answer?
crystal ball

I mentioned to my wonderful mentor Vicki soon after my daughter’s diagnosis that I wished I had a crystal ball so we would know what to expect down the road. She had just turned two and I was mostly thinking of practical things—what equipment she would need through the years and whether or not our tiny house should be remodeled to accommodate it. Vicki's response surprised me and her words etched themselves indelibly on my memory.
Vicki drew in a long breath and looked me in the eye. “No. No, you don’t really want to know the future. And here’s why.
“If you saw that things weren’t to turn out as well as you'd like, you’d be sad and feel hopeless. If you were caught up in sadness over what is to come, would you be able to enjoy the good you have now?
“And if the picture of the future was to be better than what you expect, you would be impatient for it to get here. You would miss the importance of the little steps it takes to get to that place and forget to celebrate those tiny miracles along the way.
“No, learn to appreciate today. Enjoy your girl for who she is today and let tomorrow take care of itself.”
Wise words from a wise woman! They caused me to adjust my sights from the future to today. Of course we still hope for a good tomorrow; we work to bring opportunities that will have our daughter ready for tomorrow and to have tomorrow ready for her. We expect good things and work to make them happen.
But we focus on today. We appreciate how hard our girl works to practice a skill today. It might lead her one step closer to her goal…or it might be gone entirely when she next wakes. That is the nature of Rett syndrome. But today she works hard, and that is what matters. We cheer, with gusto; she smiles and enjoys pride in her best effort. We soak up all the wonder of today and hold it precious in our hearts.
If today is a rough one (and I’ll admit, now that I’ve tucked everyone into bed at our house, seizures made it a bit jagged around the edges), that doesn’t doom tomorrow. Today is just one day; we shake off the bad and go to sleep hoping for a good day tomorrow. Even a series of rough todays doesn’t mean we’re sliding into an impossible pit. We live one day and jump right into whatever tomorrow brings.
For all our kids, may today—and tomorrow—be cause for celebration!

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More like this here:

Dreams, Disability, and Detours


Unknown said...

Thank you soooooo much for this timely post. We had a horrible night here (my son) and I was feeling wreched about out future...

Laura said...

Thank you for sharing that bit of wisdom!! I'd never thought of it like that before.

Aadhaar said...

Well said, and good on you for making this blog - I'm sure it will help many people - not least of whom will be you!