Nothing is Wasted

One of the most rewarding parts of the eight years I worked for Baystate Health System was getting to know some of the kids and families treated by Baystate Children's Hospital. Sometimes I'd do phone interviews for newsletter articles; or we'd film in their homes for fundraising videos or commercials. Other times we filmed or took pictures of outpatient procedures or inpatient hospital stays. It's been 13 years now, since I met my first child. I think their names, their stories, will stay with me forever.

There was Michael, and Jack, Michelle, and Theresa. Some were born far too early. Some almost died but conquered the odds. Others fought hard but lost. Cory waited years and years and finally received a liver and stomach transplant that transformed his life. He's in college now. Joey was diagnosed with Down syndrome, then got leukemia, and almost died of a ruptured appendix in the process, but made it through still smiling. Lexi, so sweet with her jean jacket and bracelets and the awkward speak of almost teenager-hood wowed me with her words on camera about her experience with cancer. The cancer shockingly came back out of nowhere and took her a year later.

And Matthew. Matthew, who had cystic fibrosis, always jumps into my mind. He was 15 when we interviewed him back in 2001 and refreshingly honest. Teenagers are like that. He didn't have much to say and didn't try to sound fancy. He admitted his illness sucked in a lot of ways. But he went on living his life and finding ways to enjoy the journey. At one point we filmed him on his skateboard, skating in circles. Charlie, the videographer, moved with him as he went around and around, talking to the camera about what it's like to live with a disease that claims most people by the age of 30.

The other day I found the article I also wrote about Matthew, for the Children's Miracle Network telethon, to raise money for the Children's Hospital. I had interviewed his mom as well. I remembered the expression in her eyes, tired but also somehow strong. "If you don't live in today, you're going to worry about tomorrow's possibilities and yesterday's depressions," she had said. "We don't treat Matthew as if he has a disease. It's just a different way of life."

Those words spoken almost a decade ago have rung through my head a lot over the past year. A lot.

At Bible study the other day the group leaders were praying before it started and someone said simply, "God, I thank you that you don't waste anything that happens to us."

That hit me in a new way, such that I didn't hear much of the rest of the prayer, I hate to say.

God doesn't waste a thing. He doesn't waste our pain; our embarrassments; or even the interactions we have with people in our everyday lives. These kids were in my life for a reason, or perhaps many reasons.

I've carried the Children's Hospital kids around with me for awhile, and I'm thankful for that. It's cheezy to call them and their parents heroes, but I will say that they inspire me to perservere. I'll be lying there at night, for example, maybe feeling a little sorry for myself, and suddenly Joey's big grin will pop in front of me. Joey in his hospital gown, padding down the halls, waiting for another chemo treatment, his parents trying to catch up with him. I can do this, I'm reminded. One foot in front of the other.

Last year I was up at the Children's Hospital in the Adolescent Unit and saw some fabulous framed color nature photographs lining the halls. I saw a small sign near them. They were Matthew Jarrett's photos. He hasn't lost his fight yet, and is doing his part to capture some of the beauty in this world.

East to West

I had a blog post completely typed out. Someone frustrated me; no, hurt me the other night and I wanted to vent about it, so I did. But it's one thing to vent and another to share all of that with the world (okay, so it's not as if hoards of people are reading this, but you know what I mean). And so I hit delete.

There's no need to go into the story. Let's just say there were tears, and the pain came from someone close to me (not Dan). It's been sort of an ongoing story and I don't think it's going to go completely away anytime soon.

After I'd gotten out some tears the other night, I decided to take a drive to clear my head before picking up something from the store. The sun was setting. The air was that gloriously pleasant, cool, breezy-type so common of almost-summer evenings in New England. I rolled down the windows and decided to really breathe; to think without my emotions overtaking me and to think outside of myself.

I crested over a hill on a road that winds past tobacco fields and up to a flat stretch of land common to our area (which is why the airport is nearby). The sky was in that wonderful moment of purple, pink and blue...puffy clouds stretched across; shadowy and magnificent. The sky overtook everything.

I kept thinking of something a friend told me recently. She was outside and could hear and feel God speaking. She could feel as if He was cupping her face in His hands and saying, "See this? This is how much you think I love you." He stretched out His hands to the left and right, as far as the eye could see, and said, "THIS is how much I love you." Not only that, but that is how much He is asking us to love others.

"As far as the east is from the west," I found myself whispering out loud, as I drove transfixed by the sky. I knew I had to forgive. He says to forgive my enemies. How will I ever do that if I get stuck on minor wounds by people who are on my side, even if they don't always completely act like it?

I know that sometimes forgiveness is a choice, and we don't have to feel something to forgive. But in that moment, when I chose to forgive, I was flooded with compassion. I suddenly saw with another set of eyes. God's eyes. I saw for a fraction of time both the beauty and hurt within this person. And I tasted the joy of being able to let it all go.

This won't be the last time I struggle with this person. I won't always have sunset epiphinies of this nature, but I've gotten a little taste of something I don't want to let go of. It's easy to say the words and so much harder to live them, but I have to anyway:

I want to see the way God sees. And love the way He loves.

If we could get that down, how much different would each of our little worlds be?

Really Deep Thoughts

"I'll see you on the other side, brotha." -- Desmond from Lost

I was with some friends yesterday and everyone was talking about their dissatisfaction with the finale to Lost; save for me and one other person. While it certainly wasn't the ending I was anticipating, the show's conclusion last month, and specifically the reveal that the characters were now meeting up in the afterlife, ready to spend eternity together with their fellow soul mates from the island, left me with a happy/wistful/strange feeling, and got me thinking.

Beth Moore, in the current study I'm doing (The Inheritance) talks about how we have it all wrong. This life is not the real thing. This current wisp of time we're in is just a shadow before the true reveal...the life beyond this life...the life that never ends. C.S. Lewis, in The Last Battle, sums it up similarly. In the conclusion to that book, to which I saw parallels to the Lost finale, the characters we read about throughout the Chronicles of Narnia are joyously reuinited on the tallest of mountains, where they look out and see their "heaven," it was the land they'd always known...yet it was richer, realer, more real than anything they'd ever experienced. The blades of grass were more green. The taste of fruit was so sweet and refreshing, that Lewis writes that the most perfectly ripened fruit in our world would in comparison taste dry, woody, sour.

I've been wondering lately how we'd live if we could grasp just a bit more how temporary our world is? I wonder what I would do if I understood that I haven't yet felt joy or seen beauty, in the way that I will? We would all live with an extra infusion of hope even in life's darkest hours, if we took a moment to examine what's really ahead, if we believe. How much do those of us who believe, believe? Believe in something beyond a fairy tale? Because God is not a cheesy God placing cherubs on puffy clouds. God is so much creative than that.

We try to grasp eternity. I remember as a child, lying in bed at night and trying to understand it. Every time I'd get a glimmer of understanding, I'd start to feel almost scared. In that second a flash would come to me reminding me how small my little life was. It wasn't a condemning feeling. I just felt...awe.

We can't even understand the universe. I remember waiting for the "T" outside of Boston and noticing a sculpture of a planet that was sponsored by the science museum. I think it was Pluto (when it was still an official planet, of course). The project was attempting to show in real life a kind of scale of distance between planets in our solar system. So the "sun" was in the science museum, and panning out from there, Mercury might have been a few streets over, or earth beyond that in another direction, and here was Pluto, out miles away, in the suburbs. Pluto, just a speck of light on a telescope, yet still within our solar system. One solar system within our Milky Way galaxy, in a universe containing literally billions of galaxies.

Space and time go hand in hand. In another Beth Moore study, Believing God, she talked about a family who lost their young son to cancer. In their immense pain of course the parents wanted to know "why." And of course she didn't have a why. But what she did know, and what she said to those parents, is that their son's suffering was a brief moment in relation to eternity. I remember her standing on the stage in that one video, providing the visual. I don't remember if she used people or what it was. But there was a line that stretched across the church, and she held up something, a yardstick or something like that, to represent each of our lifetimes. Just a sliver of it all. Even when we're slogging through despair and feel as if we've been doing so forever. Even if we have. Our forever is not His forever.

The Last Battle ends this way. I've read this over and over throughout the years, and will end with C.S. Lewis's words:

And for us this is the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story, which no one on earth has read: which goes on forever: in which every chapter is better than the one before.

"Yes" and "No"

People always talk about when kids get to a certain age and discover language, how they relish the power of two words: "No" and "Mine."

I kept waiting for that with Anna, who has been very strong-willed from just about birth, a chatterbox from nine months on, and never one to mince words when it came to what she wanted or didn't want. However, my typical child was not so typical in this area. She rarely abused the "no" word and hardly ever used "mine."

Fast forward to Ethan, where "no" is a different matter. It's funny, the way language and gestures progress. You don't notice certain things unless they are missing, and you don't notice how they progress sometimes unless you see them happening a bit more slowly than with a typical child. Last year I remember marvelling as my friend ask her daughter (who was maybe 14 months old) if she wanted a cracker. She shook her head no. For me, a light bulb went off. Ethan was about 18 months old at the time and wasn't able to do that. That was a year ago and I already don't remember how he told us he didn't want something. Ignored me? Cried? It's amazing how quickly the memory fades.

In therapy they always talk about how the first goal is to get your child to express his wants and needs. In simplest terms, that means a head shake, a point, a smile. Somewhere along the line, around the time Ethan first started therapy, we got "no" down. "No" really started with pointing to something else to indicate I hadn't chosen what he wanted...then a head shake...and back a few months ago, finally a "No!" Now we get "no" appropriately the majority of the time.

After "no" became easy they began working on making it conversational. This was back a couple of months ago. Jessica or the others would start making some zany statement that Ethan would know was wrong ("Do cars go in the sky?" "Are you eating pizza?" when he was having crackers) and Ethan would shake his head and say "no." This became a game that of course then Ethan learned TOO well. He started saying "no" to everything because it got a laugh and a response, and he stopped really thinking about what they were saying and memorized the pattern. The reason it got a response from me and Dan especially, is because it felt like the first inkling of a real, honest-to-goodness conversation with our son.

Soon we started making the conversation game always end with a question that should end with "yes." Ethan would undoubtedly say "no" and then we'd stop him. "No??? You ARE drinking juice. YES!" Ethan's yes is a sweet little "Yesh!" The first time we heard it was about three weeks ago. We are making good progress with getting "yes" responses, and I love it. This is such a little thing, but I cherish it just as much as the stories Anna was telling at his age. We often have to prompt Ethan to fill the "yes" in, but he learns quickly. Outside today, for example. He was pushing me down the slide and I asked him if he wanted me to go down the slide again.

"Slide again!" he answered enthusiastically. Using those two words together would have been big news back in January. But he's moving on. "You mean, yes?" I gently asked him, and he repeated yes back to me. A few minutes later, I went down and asked him again.

"Ethan, do you want me to go down again?"

"Slide ag--" He stopped and thought for a second. I could see the gears turning and he exclaimed, "Yesh!!"

I don't care if it's yes, no, or mine. Actually mine would be a really cool thing. Anyway, he can say them ad nauseum. I'm savoring every word.

The Need We Don't Need

Today is Wear a Tie day in Anna's kindergarten class. Every day this week, the last full week of school, they're doing something different (Pajama Day! Hat Day!). This morning before school Anna realized that would mean walking into school with a tie around her neck. I could sense the worry mounting before she spoke, as she thought about the kids who weren't participating in Tie Day seeing her walk through the doors.

"I'll put in in my backpack. Miss Vokert can tie it for me," she said first. When I nixed that, she wanted to make a paper tie. Then wanted to find a way to roll up her tie and hide it from people as she walked in the door. Yes, the monster had reared its head. The I Don't Want to Do Anything That Will Make People Laugh at Me monster, also known as I Care A Lot About What Everyone Else Thinks.

"Anna, Anna," said to her as she paced in the kitchen, panicked. "I know you are worried. But you can't live your life ruled by what other people think of you. When you do that, it's like they're putting yourself in a cage."

And once again, I was preaching to my daughter and myself, simultaneously.

I can't remember when I didn't carry the weight of worrying what everyone else thought. The burden has loosened in recent years and I look forward to wrenching away from its grip even more in the years to come. I can remember being in first grade, Anna's age, and my mom mixing up the school picture day along with some of the other parents and sending me to school in a cheap t-shirt, looking rather sloppy. "They must all think I'm such a slob, me and everyone else from our part of town (read: the other side of the tracks)," I remember her saying. "I don't want them thinking less of my child because of this!"

In my head over time I realized it must be pretty horrible to have people not think well of you. Which is true in some respects, but the point I missed is that it's one thing to not be liked because perhaps you don't treat people well; it's an entirely different matter to assume people don't like you and are judging you and to be constantly trying to put on the best front so that you never rock the boat and invite judgment.

About 10 years ago my mom and I were invited to my cousin's bridal shower. We hadn't seen her in ages and the shower was to be held on the beach in swanky Marblehead, Mass., of all places. My mom and I spent most of the ride there analzying if we'd chosen the right thing to wear. What DID one wear to a shower on the beach, of all places? Was it casual? Was it really on the beach, literally? Was it fancy, being in Marblehead and all and being paid for by my well-to-do aunt and uncle? At one point we actually stopped at a convenience store and changed. My heart was pounding, thinking of arriving and being just all wrong.

Then we got there, and the shower was indeed right there on the sandy beach, under a tiny pavilion, and people wore sundresses and flip flops and we all had chips and sandwiches and drank soda. Inside I was laughing and feeling sheepish. So much wasted energy. So much.

That's what I wanted to tell Anna. That is what I have lived most of my life doing. I have often lived ruled by a running internal conversation that eats away at me; or, as I alluded to Anna, traps me in a prison. Don't let people know about your brother. They'll think your family's weird. Don't share your faith with anyone. They'll think you're one of those freaky Christians. Don't speak up and voice your opinion -- what if they get mad at you? Don't go out on a limb and do that. People will think you're overconfident and basically full of yourself.

In time, I've gained some confidence, security, and some plain common sense -- it's not all about me and half the time people aren't even thinking or judging what I'm doing but concerning themselves with their own lives. But I know I haven't smacked this demon down completely yet. If I had, I wouldn't have spent yesterday afternoon fretting about how to host a tea party for six-year-old girls, wailing to Dan about not growing up a girly girl and not knowing how to set a table in a cool decorative way and worries about Connecticut suburban moms juding me.

"Deb," he said to me in that same voice I used with Anna. "It's a tea party. For six-year-olds. This isn't tea for the queen." His voice of reality cut through the air and made me stop and almost laugh. Almost.

In the car with Anna driving to school, I told her I knew she was worried. "But you're going to make yourself tired and miserable always worrying what everyone is thinking of you. I've lived a lot of my life like that Anna, and it's not fun."

For a fleeting moment I thought ahead to the future, of friends and parties and playdates and of Anna's inherited need to blend in clashing with a brother who doesn't quite.

There will be more moments like this, I thought as she climbed out of the car and neatly rolled up her tie into a ball and clutched it in her right hand. This drew more attention to herself, but I'd never tell her that. The man letting the kids in the door looked at her and smiled knowingly.

There will be more moments like this for all of us. And maybe, just maybe my son who has no choice but to not blend in will help his mom and sister realize once and for all that really, honestly, that's not the worst thing in the world.

The Power of First/Then and Bye/All Done

Since Ethan's made it out of his rough phase and is now still challenging, but more just two-year-old strong-willed challenging, we have started implementing a picture schedule in therapy. The picture schedule most of all is to help him in what I'd call his weakest area -- sitting and attending to a task for more than a moment.

I can't believe how much of a difference it's made. I'd heard about the schedules forever and knew they'd be useful, but I guess I didn't understand how to Ethan, the schedule would be downright reassuring. Right now they're working on him having 2 tasks before going to mom for a hug or just some "moral support." By next week they may bump it up to three tasks. So they get out the board, take out the pictures Jessica took of various toys, and then the picture of mom and voila! Order has been brought to Ethan's universe.

"Ball, puzzle, MOM!" he'll say, pointing at each picture, and savouring the mom picture with such a look of affection it cracks us all up. That's not to say there isn't still some wrangling on the therapists part at times. He'll decide that he doesn't particularly care to do what's on the schedule on would rather make a sneaky run past them for mom anyway. But 99.9% of the time, if they can just go back to the pictures ("Wait, Ethan! It's first puzzle, THEN mom") he settles down and gets to the task at hand. It's as if, with the pictures there, he has to obey them. The pictures dictate the order, so that's the way it must be done.

I started doing that at the beginning of the day, letting him know what's happening. Again, I didn't realize how much he'd care. A typical conversation goes something like this:

"Ethan, today is Friday. Daddy's going to work, and Anna's going to school. Then we're going to see Ms. Diane (outpatient OT) and Ms. Karen (playgroup)."

Ethan will say something like, "Church done."

"Yup, no church today," I'll answer. Then sometimes I'll hear, "Y done" (as in Big Y).

"You're right. No grocery shopping today," I'll answer.

Later in the morning, I'll start up with the reminders again. "We're going home for lunch now. Then it's time for nap, and then Anna will be home from school." This running dialogue goes on all day. And I can almost see the wheels turning as Ethan tries to order each day in his head.

Along the same vein as the pictures, I'd heard about the First/Then phrases for quite awhile. "First eat your corn, then you get a cookie/"First clean-up, then go outside." Again, I didn't realize that using them often would help ward off many a tantrum and help Ethan stick with many a task. Something about First/Then, I guess the promise of the reward; the reminder of the respite on the other side of the undesired work he has to do, is a mighty motivator.

First/Then is a big part of our lives. So is "Done" and "Bye." Ethan has trouble with transitions sometimes. He's not crazy stressful like some stories I've heard, but he has his moments. Case in point: this weekend, climbing Talcott Mountain. On the way down, he was tired and getting cranky. He wanted to throw rocks off the cliff. We did for awhile, but then it was time to go. I would have been better off giving a little warning and then taking a moment with him to say goodbye. "Bye rocks!" "Bye cliff!" I should have said in the sing-songy voice we always use. "Rocks are done." I did none of that, and a five-minute tantrum ensued. This method doesn't always work, but it makes a great difference, particularly with storm drains. Ethan has a deep affinity for throwing things down storm drains and can get quite obsessed about it. Nearly every day we pass them, inevitably, and even in the car Ethan will ask for them. "Drains are done," I'll remind him kindly. "Bye drains."

"Bye," he'll usually say softly, and yeah, he may ask for them again in a little while, but whining and tantruming are averted.

This happened on the trails in Windsor yesterday, when Ethan kept wanting to throw rocks off the bridge. I tried grabbing his hand to move him along, and he wasn't having any of it. After about a minute, I realized I needed to take a different approach.

"The bridge is done, Ethan. Bye bridge! Bye water!" I called.

"Bye rocks!" Ethan added, and slowly started to come rather than going limp when I tried to grab his hand. He kept looking behind him sadly, and he put up a fight in another spot on the trail later. But I've found if I can remind myself to stay in the pattern, to not get emotional, and to throw out the key words, it can often make a might difference.

The world can be an unsettling place sometimes to my little guy. I've got to remember that, when I'm tired of saying goodbye to storm drains or making my hundredth first/then promise. He NEEDS this, just as he needs a hug when he's hurt or praise when he's done the right thing. Order for Ethan means security and safety, and most of all trust. I'm fiercely proud to be able to give him that.