by Tim on February 6, 2010
My grandmother is still with us, but her health continues to worsen. She’s had some OK days, but the last couple of days have brought a more significant decline. I’m starting to expect the phone to ring any minute. I’ve constructed ways to detach myself from that inevitable moment. I realize I’m pretty good at walling things off. When I drop those defenses, I start to lose it. I guess I’m the kind of person who has to grieve a bit at a time.
Between scrambling to finish work projects that have about sent me over the edge to dealing with snow and snow days (and the resulting craziness that comes from everyone being off schedule), I’ve had plenty of opportunities to wrap myself in other things. Even when life is really busy, I normally still try to write or read something or reflect about life or do something that grounds me. Now all I want to do is zone out and forget about the clouds hanging over us.
I’ve assumed the responsibility of writing my grandmother’s obituary and funeral bulletin. Writing usually comes easy to me. This feels more like climbing Mount Everest. I stare at the blank screen and feel paralyzed, but I know if I wait until after, I won’t be able to do it at all. I try to do the less emotional parts like listing surviving relatives just to make some progress. When I get into more complicated details like colors and pictures and design, my brain just shuts down. It’s taken me days just to be able to sit down and write a blog post.
The most important part to me is that I don’t want to write some dry account of her life. It’s not like we get to publish a small novel in the paper, but it needs to say something worthy of her. In addition to the factual details that go into obituaries and funeral bulletins, you do get room for a paragraph or two to summarize someone’s life. But this is not just any someone; this is the someone who has kept all the mismatched parts of our lives woven together since the day we were born.
A year or two ago, somebody turned the idea of six-word stories into a popular phenomenon. The idea is to try to tell an entire story in six words. It sounds impossible, but I’ve read some fantastic ones. (Samples here via Wired and here at the Six Word Stories site) Then came the natural extension of that – six-word memoirs. (the Smith Magazine project and illustrated ones at NPR) The suggestion I read: write the six-word story of the person’s life and let that guide how you write their obituary.
This certainly isn’t easy either, but there is something more focused and less daunting about it. You can’t encapsulate an entire life this way, of course, especially not one full of rich stories that touches countless people. It does, though, let you capture one particular theme or characteristic or truth about someone that can speak to the whole of their lives. In a world full of words and noise, perhaps this is the path to speaking simply and clearly to what’s most essential and fundamental about someone and what they stood for.
So while I sit down this evening to reflect on that for my grandmother, I encourage you to try it out for yourself and your kids. Thinking about your life, what would your six-word story be? What would it be for your kids? What about just something that happened today? What about six words about autism?
by Tim on January 27, 2010
If you follow us on Twitter, you may have read that my grandmother’s health has taken a very bad turn. Her cancer returned with terrible force and swiftness, and now we are holding our vigil and trying to keep things together as best we can. I dread the phone ringing. I don’t think it will be long now.
I got the news about her health this past Thursday, and by the next day it had already gotten much worse. I had originally bought a last-minute plane ticket right after I first heard the news to fly up last Saturday, but her deteriorating condition was too much for me to wait that long. I couldn’t take the chance of waiting that extra day. I threw some luggage in the car, left Mary with the kids, and drove as fast as I could to get there. I arrived just as she was going to bed that night. I hadn’t seen her in about four months. I nearly fainted. I just wasn’t prepared to see her so frail.
As I should have realized, though, her body is frail, but her spirit is irrepressible. There she was telling jokes and picking on people and being the person I’ve always known even while she was in pain and struggling to do even the most basic things. It was a lesson in strength and dignity that I’ll never forget.
In celebration of her 90th birthday in 2008, I posted “What My Hero Taught Me About Parenting an Autistic Child”. A few people encouraged me to share it with her, but I never wrote here what happened after I did. The short version is that before she went into surgery earlier last year after her cancer first started, I had my sister give her a printed copy of it. She said she read it several times a day when she was in the hospital that first time, and most days since. There’s no way I can put into words – particularly without bawling my eyes out – what that means to me. And it was the last thing we talked about before I left to come back home Monday. In all likelihood, that post will be our final shared memory. I draw some measure of peace from knowing that she will go to her eternal rest knowing how much she has meant to me.
I will have much more to say about her and my visit up there in future posts. Right now, the emotions are too strong and raw for me to keep writing. More than anything, I just want her last days to be as comfortable as possible where she feels surrounded by our love.
by Tim on January 18, 2010
I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.
Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.
Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”
Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.
Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.
I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.
I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.
I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.
I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.
I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.
I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.
I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.
I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.
I have a dream that more money will be spent on services and support for both children and adults.
I have a dream that whenever any of us begins to fall there will always be another to help them back up again.
I have a dream that instead of judging we will take the time to understand.
I have a dream that what unites us will be stronger than what divides us.
I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.
I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.
I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.
I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.
I have a dream today.
by Mary on January 15, 2010
When I was pregnant with Dale Jr, I started forcing the J-man to walk up and down the stairs by himself. I just couldn’t carry him. It took us a LONG (echo long, long, long) time to get him to go up the stairs, and coming down the stairs was even worse. Finally though, he did it. He held our hand, and walked up or down the stairs.
After Dale Jr was born, there was a point where everyone was sick. Everyone. And so we carried the J-man up and down stairs because he was that sick. He was pitiful – when we were downstairs, he would just lie on the floor and look sad. He had no sense of balance at all. And so, of course, he started to depend on us to carry him again. And, like idiots (or, you know, people who just wanted to get through the day!) we did.
I decided this week that the J-man was going to start going up and down stairs by himself again. The reason? Our incredible babysitter (Ms. Cindy) was over, and the J-man wanted to show me something while I was upstairs working. So while Ms. Cindy was occupied feeding the always hungry Dale Jr, the J-man just walked up the stairs. By himself. We were all shocked. But I figured, hey, if he could do it when he wanted, then we were dealing with a behavioral issue, and not a sensory one.
So we started. And it was AWFUL. He shrieked and cried and twisted and refused. I tried using Veggie Sticks as a reward. He didn’t care. I tried putting Legos on the steps. He would come up a step, pick up the Lego, and then go back down the step. He did that all the way to the top… and then went back down the steps because, Silly Mama, Legos don’t belong on the steps! But he refused to come off the steps into the second floor hallway.
I ended up picking him up, putting him on the steps, then closing the baby gate, so the only way he could go was UP. Oh, he tried to slither under that gate. He tried going through the spindles at the bottom of the stairs. But the only way to move was UP. The first time, it took us over an hour to go up the stairs. I went to the top and folded a load of laundry. I read some blogs. I purposely DIDN’T listen to the screaming. And it was hard. For everyone in the house.
Going downstairs was even harder, because I worried that he would fall. So I sat him down and showed him how to bump down on his bottom. He didn’t like that. I was so frustrated that I grabbed his feet and pulled him down each stair on his bottom, one at a time. He was SO upset by this that he tried to scramble back up the stairs! Tim had to do a lot of rocking in the mancliner to soothe.
We went two days like that. Diapers went a little longer than they should, because it was just so much work to go up and down the stairs. And then Wednesday morning, I put him on the stairs, and he walked down them. He freaked out at the bottom, but he calmed down pretty quickly. Same with going up.
Thursday, he walked down the stairs calmly when I walked with him. He walked up the stairs calmly when I walked with him.
Today, I guess he decided that it was time for a diaper change. He walked to the steps, walked up them by himself, and shook the gate until I opened it. I opened it, and he walked to his room for me to change his diaper. Then he walked back down the stairs. And we celebrated.
I know, a lot of people think, STAIRS? Really, you’re celebrating stairs?
Yes. Yes, we are.
