Growing up with one sibling, a sister, means we pretty much experienced everything in life together until one of us moved out. It was her, she is the older one. Then we spent the following years explaining our lives to one another, places we would go and people we would meet so the other was sort of still there experiencing it. Mike must have gotten tired of hearing me say oh I wish my sister could see this on each trip we took....So...we both took pictures or got souvenir shot glasses, mugs, or key chains. Little things to let the other know you wished she was there to see it all with you, too.
When my only sister experienced the tragedy of her first born being diagnosed with SMA, my heart shattered with hers as if it was my own daughter's life changing before my eyes. I remember wishing at that time I could hand her my muscles so she could run track meets and cross country invitational's, or even just so she could use them to walk. Forever.
The diagnosis was final the year I was getting married and it took a long time for all of us to swallow. I recall completing my college degree the following year or so and taking a course called Performance Studies. I learned to incorporate written works, visual and audio media to deliver a personal message with each project. The most memorable and moving brought some to tears; including me. It was this performance that I realized there was a part of my sister's life I could never fully understand, and it angered me there was nothing I could do to change that.
Part of the performance was a video tape of little Lindsey using her small hands (from her wheelchair) to assist with the care of her baby brother. I knew exactly what song I wanted to play along with the scenes. I was there the night she came home from the hospital as a newborn. Nothing could stop her from crying, except listening to Jewel. Jewel's song Hands is what I think she would have sang to all of us at that time in her life if she could have pulled the words together.
The class was silent, mesmerized by her subtle movements and loving effort with each clip of footage. Then I began to read Welcome to Holland by Emily Perl Kingsley. It reads:
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!
I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath,
you look around.... and you begin to notice that Holland has windmills....
and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...
and they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things ... about Holland.
*
When it came to the part above I bolded, I had to walk off the stage. I was sobbing too much I could no longer speak. My classmates thought it was part of the act. I worked at pulling myself together and wondered what just happened. As I got back on stage to complete the reading, I read the words, but my mind was just realizing that I can never go with her to Holland and she will never be with me in Italy. Ironically, Mike and I were planning a trip to Italy that year, which made the meaning of this reading resonate a lot deeper.
I try to imagine that our lives apart won't keep us (literally and figuratively) distant, but the truth is that's a fact we have to work around and work hard at. She has to keep trying to explain to me what the windmills are like and I can tell her about The Coliseum. We also get to verbalize our hardships so we can continue to support each other. Just like she did for me when I didn't make cheer in Jr. High. Like I did for her during a teenage break-up. The kind of support that, at times, only a sister can offer.
