Monday, May 13, 2013

what I can't do

As Hannah's older sister, my perspective on her has changed over the years. When I was younger I was aware she was unique and did not have all the health benefits my brother, sister, and I do. I knew there was something different with her. But at the time I thought she was just going to take a longer time to grow. I thought she would eventually start talking and even walking. I remember doing flashcards and Dynavox with her for entire afternoons, hoping she would say just one word. I remember my dad holding her up on one end of the room as we sat on the other, cheering her to take 'steps' so that she might learn to walk. And, I constantly prayed that God would 'touch and heal' her.

Never happened. No inspirational Christian flick here. Not our division.

Now I'm older, and I hate to admit it, but I'm also bitter. I know Hannah is never going to talk or walk, at least not in this life. I know she can never tell us what her favorite color is or why some things make her laugh and some things scare her. I know that, odds withstanding, I will probably have to watch my parents bury their youngest child. I also understand, seemingly more and more, what we cannot do because of Hannah.

It's become sort of a default in our family that when we want to go somewhere - a shopping trip, a museum, even a walk - Mom has to stay home with Hannah. Mom knows Hannah the best and is her supreme caretaker, getting Hannah ready for school in thirty minutes when the rest of us as a team could do it in fifty. That means a lot of cool events that should be considered 'family events' are not.  Here is a prime example: the Indianapolis 500. My dad has gone to this race for a long time and knows the history of the track, the racers, the legends, the whole she-bang. My first race was in 2008 and since then I've loved every bit of it. Whether you're into racecars or not, the experience is mind-blowing and unforgettable. We can't go every year but since 2007 my dad has taken all of us to the race.

And guess who stays home while we're at Indy? Mom and Hannah.

And I wish I could say the Indianapolis 500 is a family event for us, because it should be. It's something entire families should experience together. But taking Hannah to the race is out of the question. She's in a wheelchair and she gets dehydrated going to a place filled with stairs and stands on a day that can easily top ninety degrees? No...way.

So where does that leave Mom? Staying home with Hannah again, waiting for us to come back and tell her what an awesome time we had at the race.

She wants us to go; Mom would never make us cancel a trip just for her (I have never, ever known her to have the mentality of, "if I can't go, then no one can!"). My dad wants us to go so we can experience it. I want to go. But at the same time I hate myself for leaving them, as if to say, "Mom, Hannah, don't get in the way of my good time!". Unless training someone else to care for Hannah overnight works out - something we've done before but never for such long stretches - trips like the Indy 500 can never be a true 'family' experience. And that just kills me. So, because of Hannah, something that could be a family tradition has dwindled down to 'Dad gets the kids away from Mom for a week' tradition.

That is just one example. I could complain all day; I'm a very good complainer. I have literally (yes, literally) lost count of how many times we found an ad for an awesome campsite, or a convention, or a county fair, or a historical site, or a petting zoo, and because of Hannah we could not go. I have lost count of the times my brother, sister and I begged for our parents to take us to one stupid little thing, because "it's the chance of a lifetime!" and "it's going to be so much fun!" or the good old "It's Star Wars!", and the response that always ended the conversation was, "What about Hannah?" Countless times a cool event came up and we had to decide whether to turn it down or split up the family, and because we love Mom and Hannah and honestly detest constantly deserting them for our own pleasure and entertainment, we've chosen the former more than not. We are all aware of that default in our family and we hate settling for it.

I'm not saying my whole upbringing has been void of fun and games and petting zoos. Nor am I not acknowledging this one wonderful lady who occasionally takes care of Hannah for a day so we can have a family shopping trip. I am saying we tend to crack up at the word 'vacation' or the phrase 'family experience'. To that we tend to say, "Take a hike.. preferably, up a steep trail. In the mountains. In the wilderness. You might as well since you're not in a wheelchair."

And do you know what hurts the most about all this? When my parents were homeschooling us, they had a dream of what it could look like. My mom had this amazing plan that when we were studying the American Revolution and the history of our country, we would have a 'family trip' out east to see Washington, DC, battle sites, reenactments, all the good stuff. They wanted to give us an experience outside of a textbook or a classroom so that history could come alive, and not only would we learn about America in the best way, but we would have an incredible family-bonding experience in the name of real education. That was my mom's dream. Because isn't that what homeschooling is supposed to be about? Isn't that the point of homeschooling in the first place?

Hannah came along and that dream was shattered. No trip out east. No Library of Congress, no Declaration of Independence, no White House. It was a dream and it is a dream and it will always be a dream. And now that I'm older, I know that. That is just one other example.

So why am I saying all this? Why am I bugging you guys with my complaining?

A few months ago, my dad popped an interesting question to us. He said, "We could all list things we cannot do because of Hannah. What about things we can do because of her?" (I might have touched on this on earlier posts.)

The scary thing is that none of us had an immediate answer.

But I'm getting a few ideas. One, of course, is this blog. Another might be an installed determination in me to carry out the dream my parents had for my education to my kids, as I plan to homeschool them. Or maybe always having recreation, entertainment, and pleasure at our disposal might have done something to our family we did not want done. Who knows? If I had been given all those conventions, camping trips, and museums, would I have become more selfish, greedy, or ethnocentric? I have no idea.

But it's something I really have to think about for these next few months. I have to stop resorting to the bitterness clogging up my soul. I have to stop thinking about what I was deprived of because of my sister, and rather the things I have been blessed with.

The best part is that when I realize I'm really thinking along those tracks, I feel more at peace. I feel calmer. I feel more hopeful. Most of all, I feel like the love my sister constantly shows to me is, quite possibly, something I can pass on to others. If I overcome my bitterness.


  1. Wow. I really respect your honesty here. I worry about that with my own kids.. We leave Ella behind on some stuff we do and I always feel a little guilty, but at the same time the boys deserve to do certain special things even if their sister can't.. I know we can't know what things 'would have been like', but I'm sure you would be surprised at what a different person having Hannah in your life has made you. She wouldn't want you to be bitter. I'm sure she would want you to enjoy your life and not feel held back by her. Try your best to take the good from the situation and let the bad strengthen you and make you into a better person.

    1. Thank you so much. It's easy for me to get caught in my bitterness about what "couldn't have been" that I overlook how much of an influence Hannah has been on my life. You're absolutely right.