by Tim on February 25, 2010
Not surprisingly, we’ve had a rough go of things lately. So I was thrilled to get our child care person in for about four hours yesterday. We know we can hand the reins of the house and whatever else to her for a few hours and do whatever we need to do. We’ve found a variety of ways to reduce the amount of money we spend on various things during the month, and we’ve used some of that savings to pay for occasional in-home child care, which lets us have a few opportunities to get some things done and generally get a break.
Yesterday for me was the truest form of respite care. I’ve been so tired lately that I feel delirious much of the time. All the lack of sleep that went into all of us traveling to my grandmother’s funeral and all the extra emotional exhaustion that went with it has just about done me in. Having her come over is always a godsend, but yesterday felt close to a miracle.
She got here about 12:30, I did a couple of quick chores, and then fell into bed, piled on the blankets, and tried to sleep. It took me a while to unwind enough to rest, but finally I could feel myself sinking into something close to unconsciousness. I slept until about 5:00. I barely even knew who I was when Mary nudged me and told me it was time to eat dinner. I probably could have slept another 24 hours.
I imagine that most of us develop a pretty high tolerance for lack of sleep, mental and physical exhaustion, and all sorts of stress. We build up the equivalent of Kevlar armor like our own brand of callouses. If we don’t, we fall apart. I’ve drunk enough coffee lately to keep half of Central America in business and eaten enough donuts and sweets to stone an elephant. It’s another coping mechanism. But I’m realizing that this is like charging all that energy we put out on a credit card; eventually you have to pay it back somehow.
One of my words for the year is ‘bamboo’, but I’ve been more like a gnarled, old tree lately. While I have been giving myself some latitude within the understanding that this is so much about grief, I can’t keep this up. Life doesn’t wait around for us. It’s not like I can tell the kids to take a couple of weeks off from being themselves while Daddy regroups. Finding ways to grieve and rebuild myself at the same time is just something I have to start figuring out.
Mamaw frequently gave me a piece of advice that I often didn’t care to follow. Don’t dwell on the past, acknowledge it, move on and move forward. She tried to have this attitude about everything. I don’t think I got this at all until after the J-Man was diagnosed. I guess I liked holding on to all the psychological debris of my life as if not to would be to deny who I am. But I think what she was getting at is that holding on to all that stuff requires us to pay a steep toll, and paying it costs us and our families too much.
I invested a lot of time and energy doing what I needed to do for her obituary and funeral because I wanted everything to be perfect for her and to honor her in the best way I could. I am content with how things turned out. I feel like right now she would be gracious and thankful to us for that celebration of her life, and with her next breath she’d kick us in the behinds and tell us to get moving on with life because our families need us in the here and now.
I finally understood today that we honor her not with how much sleep we can get by without or how much coffee and donuts we can consume, but by the way we build up our families, do good for others, spread some laughter, and keep trying to leave the world a little better each day. She left us the blueprints for a well-lived life. It’s about more than survival and getting through the day; it’s about living a life that others will want to honor and celebrate, just like we did hers.
by Tim on February 16, 2010
My grandmother passed away at sunrise on Sunday, February 14th. It was the first sunny morning in her town after many, many days of cold, wintry weather.
Everyone noticed how bright and colorful and warm the sky looked. Of all that she taught us – so much that it would take volumes of books to tell – we think that wonderful sunrise was her last teaching to us. No matter how bad things seem to be, there is always light that will shine into our lives if we decide to let it.
We’re finishing up our multi-day, mad scramble to get out the door to go up tomorrow for the funeral. This has been very hard for me to talk about these past three days. I’ll write more after we get home, but for now, this is part of what I wrote for her obituary. I took my own advice and wrote a series of six-word stories about her.
I want to thank everyone for your support, thoughts, and prayers over the past several weeks. It’s meant a lot to us, more than you can know.
Six-Word Mamaw Stories
Superheroes wear aprons, get hair fixed.
Stood straight, head high, facing forward.
Uphill, both ways, overcame every hurdle.
Didn’t dare tell her she couldn’t.
Cleaned her gutters, because she could.
Brightened every day with infectious laughter.
Nobody went hungry at her table.
Soup beans, cornbread, fried potatoes – home.
Plates always full, glass never empty.
Always constant, our family’s true compass.
With every breath – grace, dignity, strength.
Watched over us, and always will.
Best in us comes from her.
Nothing is more important than family.
Love everyone and everything God made.
You can’t love someone too much.
Make your home everyone’s safe place.
Provide more than what people need.
Leave porch light and coffee on.
Hot biscuits and gravy cure anything.
Enjoy life; go back for seconds.
When times get rough, tell jokes.
Be a survivor through every challenge.
Your legacy lives on in us.
We remember everything good; we remember.
Rest now, surrounded by our love.
You are forever in our hearts.
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.
One year ago, we spent that March 19th in shock and in tears, stunned and lost. I can picture every part of that small office and the way I kept gripping and releasing the arm rest of the faux leather couch. I can still see the doctor looking at us, eyes full of understanding, clipboard and notes in his lap. I still remember the calm and kindness in his voice, an even tone but direct and honest and spoken through a chorus of moanful sounds from the J-Man, though I remember few words other than ‘autism’.
My fingers still know how the fabric over Mary’s knee felt as I awkwardly patted her in an uncertain attempt to comfort both her and myself. She was bouncing him up and down trying to calm his overloaded, tired body as he whined, mentally and emotionally exhausted from the evaluation. I remember how I put my flat, left palm across his back – in those days big enough for me to span his entire back – pushing and rubbing in some gesture that lacked any clear purpose other than parental instinct.
I recall thinking, how many times has this doctor had to sit across from parents and tell them this same news? I don’t remember the exact first words out of my mouth after hearing the diagnosis, but I know the meaning behind my question – What do we do now? I wrote down everything he said as if my pen could save us, like maybe I could draw some road to a future we could no longer see.
I remember the plainness of the 70s-era office building and the trees hesitantly coming into bloom outside under a cloudy sky. I can re-feel the sting in my hand from banging my palm on the gear shifter in the car. I can see as much of the way home as the parking lot, but nothing about the drive itself. That road had disappeared too.
I wandered around for a while in our backyard, lost and angry and feeling sorry for myself, probably justifying my self-indulgence by saying over and over how unfair this was to him. I let dread and fear and despair and hopelessness crash through me like terrible waves. I could feel my arms flailing without purpose at everything and nothing, like a man desperately trying not to drown. I remember saying to myself that I was going to kick autism’s ass, not having any idea what that really meant; it was just the first thing that popped into my head.
Then at some point as the clouds yielded a little that afternoon, I could feel something -somewhere right under my sternum – harden like a fist. It didn’t feel like anger or hurt or some odd form of grace. I suppose it was pure, primal resolve. I remember the thought coming to me, He’s the same today as he was yesterday. He is our beloved son and we will do what it takes, even though I had no idea at all what that would mean either.
But on that day, that was enough for me. I went and held him and rocked him and kept saying, everything’s going to be OK, over and over again. It was a mantra at least as much for my benefit as for his, and I still say it often when it’s hard to find any other direction than down.
Things have changed a lot over this past year. My perspective has evolved and grown and in many ways been transformed. But I think I figured out what the point is of observing what I’ll call ‘Diagnosis Day’. We need to remember how we felt. All that hurt and sorrow and anger reminds us of where we started from and how far we’ve come. It helps us to see the same feelings in the eyes of other parents and know how to reach out and comfort them. This is what helps form the foundation of our compassion.
And then there’s remembering that on the morning after the diagnosis, the sun still came up and a new day began, as it has every day since. And he really was just as wonderful and beautiful and perfect as he was the day before, if not even more so, just as continues to be every day. And the resolve at my core grows anew each day as grace slowly and continually seeps into each crack inside me, bringing with it the love and joy to fill and heal the places that were once raw with hurt and anger and grief.
This morning, I was frustrated and exhausted and stressed and frankly scared about all the challenges and changes that are to come. I’m slowly learning to be OK with this since it’s just part of who we are sometimes, but there are days like today where that’s not easy.
But as I look across the room at Mary smiling and rubbing her hand across her tummy over the new wonder growing inside her, and watching our son laugh and smile and spin and say with pride and conviction one of his newly-discovered words, they help me remember that everything really is going to be OK and that I truly am the luckiest man in the world.
by Tim on January 6, 2009
[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]
The 439 Stages of Grief
Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.
Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.
They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.
They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.
We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.
Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.
But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.
This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.
And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.
Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.
And this is the way it begins for all of us, with one, single, determined step.
[click to continue…]
