Wednesday, November 27, 2013

A Matter of Life and Death

I came across an old magazine article recently advising how to talk to your kids about the Sandy Hook tragedy. Then just the other day I saw a summary of the official report on the shootings had been released, as we approach the one-year anniversary. One year. It seems hard to believe. I still feel sick whenever I think about it; I'm sure most of us do.

Neither kid has ever offered up any questions about Sandy Hook, although they certainly heard it talked about and saw (brief snippets) on the news. I'm thankful for that. I'm thankful because there are questions that, despite my best efforts, prayers, and attempts, lack the answers I wish I could provide: that I can guarantee they will be safe, that horrific things like that will not happen again.

Anna has never talked about this, despite her natural curiosity about most things, but in the past few months it's been Ethan who's been asking lots of questions about death. He even approaches it in the classic style they mentioned in the magazine article: he'll express out-of-the-blue statements or concerns, then make a quick gear-shift to something completely mundane. It throws me, big-time. "I don't want to die," he'll whimper before bedtime, and follow it up three seconds later with, "Tomorrow we have art!" and a huge smile on his face.

In these discussions I always feel as if I am treading dangerous waters. My sense is to proceed very cautiously and try to straddle that line between not outright lying but not providing frightening details that will refuse to leave his mind.

As with most of life, Ethan tries to make rules about death. First, he was convinced that only old people died. I had to very gingerly tell him that sometimes (not often) other people did, too. Thankfully, he didn't get hung up on that too much, but did zero in on the age thing. Of course, he wanted an exact age, wanted to know how old most people live to. He's settled on the eighties. Most people who are in their eighties are definitely going to die soon, he's decided. I just worry about the day he goes up to one of these octagenarians and lets them know that.

"I want my body to live forever!" he tells me, most likely thinking of superheroes and powers. And of course this would be a great time to talk about God and heaven and all of that, and we do...but try explaining a concept like heaven to a concrete thinker for whom imagination is not a strength. Those pat Christian answers don't completely work. You'll be with Jesus all the time in heaven, honey. Meanwhile, he's thinking: I don't know where that is, what it looks like, or what I'll do there. "I want to live in this house forever," he has said emphatically. Heaven? At this point he can't even picture the cliché-ish angel on cloud with a harp. Heaven is not much more than a word.

A little theological break here: when I think of heaven, I imagine excerpts from a couple of great books: The Shack and C.S. Lewis' The Last Battle. Floating around on clouds all day, playing harps, walking on streets of gold while calmly all sounds rather boring to me. I've got to think God is more creative than that. In The Last Battle, which describes the ultimate fall of Narnia and the "end of the age" of that world, the characters talk about how as they enter what is their version of heaven, they see it's actually heaven that is the "real" thing, that everything that had lived in Narnia was just a pale copy of what truly exists...that the juciest, sweetest fruit they had ever tasted was dry and sour. Everything good and awesome and wonderful on earth is there -- but better. And as the character in The Shack has a moment to see from God's perspective, in heaven I envision there is a creativity we now can't fathom, where the very growing of plants and setting of the sun sends off colors and sounds and beauty we can't even take in. To me, heaven isn't a cloud. It's a completely different dimension.

Yeah. Good luck explaining that to a kindergartener.

And so I falter, trying not to sound like I'm spouting platitudes. And sometimes, trying not to cry.

"I want to know something," Ethan asked the other day, in the middle of washing his hands. "Does it hurt to die?"

Oh God, I thought. Literally. Like I know this?

"Only for a minute, hon," was all I could say. "Then you don't hurt anymore, ever."

And a few weeks ago, the tears welling in his eyes...I can't write about this without crying, too: "But I don't want to go to heaven without my family. I want to be with all of you forever."

Somehow I managed to hug him and hide my own eyes. I had to relieve some of the stress, so I told him that he wasn't going to die for a long, long time, and that he didn't need to worry about that right now. Someday, maybe we will tackle the concept of eternity, of the wisp that this life is compared to the forever, and that his family will be with him, and that any separation from each other will be like the blink of an eye.

I remember lying in bed when I was 9 or 10, trying to fathom that God always was and always will be. I thought of that page in The Last Battle, the one talking about all of them starting their life in eternity, and attempted to grasp the concept of existing without an end. My brain started hurting, and I started to feel really strange and slightly scared. Sometimes I still do.

But I know, when I was a child, I wasn't just handed clichés. My hope and prayer is that everything I share, everything I teach, comes straight from my heart, my experience, my belief, and is not just rote obligation. So for now, we talk a little bit...about God, and heaven. About death. And about reassurance and security. I don't think he needs so many words right now. I think sometimes he just needs to be held and told it's going to be okay.

C.S. Lewis - concluding words of The Last Battle

“And as He spoke, He no longer looked to them like a lion; but the things that began to happen after that were so great and beautiful that I cannot write them. And for us this 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 for ever: in which every chapter is better than the one before.”

Monday, November 25, 2013

Up is Down and Down is Up

Let's talk about one of autism's fringe benefits. Can you bear another 80s reference? Anyone remember that show called You Can't Do That on Television? It originated in Canada (and was shown on Nickelodeon) and was sort of a "Saturday Night Live"-type, sketch-themed show featuring teenagers. They always had a segment the stars of the show would herald as "an introduction to the opposites." What would follow was several sketches of life for a kid if the world were completely upside down - like parents forcing their kids to eat junk food or teachers yelling at students for doing homework.

(For your viewing pleasure, here's an old, grainy YouTube video. Man, I used to love that show!):

This is our house, sometimes. You see, often with Ethan, work is good. Play and free time are bad.

My boy really likes to work. Maybe not all the time. He does have his typical kid, "Aww mom, I don't want to clean my room!" moments.

But overall, if you had to ask me if Ethan prefers work or play, I'd have to say, in a lot of cases, yeah, he'd rather work. This is probably one of the biggest thing that separates him from just being any regular child.

I think Ethan prefers work for a number of reasons. Work, as opposed to play, has more structure and predictability. Work doesn't involve him coming up with ideas but rather taking specific direction. Work, at least the kind we've been doing lately, has a specific starting and ending point.

SO, for example, taking on the hellish task of raking 150 bags of leaves in our yard was, for Ethan, a challenge. A repetitive system was in place -- rake, bag, drag to the curb, repeat. And counting was involved. Put all that together, and we had a boy who would come home from school every day and announce things like, "We need to do 10 leaf bags today. That will make 110 bags. Then we will only have 40 left." Heck, we even had math thrown in there.

One of the frustrating things about Ethan has always been his lack of ability to just go play. Except in the summer when he feels more relaxed, many days are spent with a constant cajoling about using my phone, going on the computer, and watching TV, while his room full of toys sits untouched. He has flashes of wanting to play with toys that come and go with no clear link to why or what triggered them. On a day like the other one when I had to do a freelance phone interview, I had no choice but turn on some Spiderman episodes and let them run (and then, of course, feel like a bad parent).

Even more, sometimes for Ethan play is actually a chore. I've had times I've told him to go up to his room and play for awhile (especially when he wakes up way too early and I need some quiet time). He usually needs me to give him a specific timeframe (such as: "You can come downstairs at 7 a.m."). Nine times out of ten, he'll appear down the stairs at the exact minute time is up. "I played!" he'll tell me, in the same manner another child might mention swallowing his vegetables to get a reward. Just the other day, he got frustrated building a marble creation (his activity of choice up in his room) and decided on his own to take out his train tracks for the first time in months. He built a cool track, admired it for a moment and called me up to see, pushed a train around it once or twice, seemed genuinely happy and excited -- and then he was done. It was literally like a switch flipping. "Now can I come out of here?" he asked, as if he were requesting release from jail.

Of course, like the leaf bag activity, this kind of attitude has benefits. Homework is rarely a struggle. In fact, Ethan begs to do homework. He wants to complete his monthly assignments in the span of a few days. He also rarely complains about leaving the house for errands. "Aww mom, but I was playing!" is not something I hear very often. Why would he? Errands means a schedule! Tasks to be completed! He also has no issue with household chores if there is a clear reward afterward (especially the gold standard: my phone). All I have to do is dangle that carrot and he's up in his room, straightening, rushing to put everything in order so he can get his reward. His sister, meanwhile, produces such drama when asked to clean up her own "war zone," you'd think we were asking her to play with knives.

So yes, in our house sometimes up is down and down is up. It's one of those things people don't see when Ethan comes off as "just a regular kid." It's not something I can really complain about, while there are days I certainly want him to I've loved having my little buddy during leaf raking purgatory. I definitely have no problem with his love of schoolwork. It's just our normal, because really, for Ethan, play is work. And the things he finds fun (pondering how to spell words, looking for fire alarms, counting cars), might not impress the average kid. Although then I think of growing up, debating with Nate over exactly which minute we would arrive at a destination. Or counting steps while walking to pass the time. Or my love of attempting to list the U.S. states or presidents in chronological order. Maybe he's not the only one living in an opposite world. Maybe I've got one foot in it, too.

Wednesday, November 20, 2013

Call Me Crazy, But Communication Can Be Really Exhausting

We were walking up to Ethan's school not that long ago when he noticed one of his buddies up in front of him. He then did what he often does when he sees someone he's really excited about seeing -- he hid behind my back. It's almost as if the moment is too much for him and he needs time to figure out what to do.

This particular day I found myself unreasonably annoyed. Maybe because he was tugging really hard on my shirt in order to hide; maybe because I was running late. I stood there huffing and puffing at him for a moment, and then I remembered an excerpt from a book I read in the 90s. I'm not 100 percent sure, but I think it was Seinlanguage by yes, Jerry Seinfeld.

In one chapter, he talks about work and the "corporate environment," and specifically about the silly little niceties we exchange with people. The memory hits home especially now as I've been back in corporate world for a few months working part-time. I remember laughing out loud as he recounted the way some days lend themselves easier to small talk. On Mondays you can talk with people about the weekend. Friday and perhaps even Thursday you can look forward to the weekend. Wednesday you can make the obligatory "hump day" reference, but what about Tuesday? Tuesday has nothing.

I thought I was the only one who obsessed about stuff like that.

And then - this one really got me - he talked about that awkward moment when you have a brief conversation with someone you kind of know, wrap it up, and then pass by them again a few minutes later. It just doesn't feel right. You've talked already. What do you do? Exchange the little half-nod and smile? Blow on by, acting like your busy? You can't say just talked. It sounds so ridiculous, but I've been there!

Again the layers of nuance that go into communication blow my mind. Is it any wonder that Ethan gets overwhelmed?

Full disclosure here, at the risk of being judged big time. The last time I was honest about this, someone years ago in a mom's group I was attending suggested I had anxiety issues and should maybe go on medication. Thanks. That was encouraging.

Anyway, the truth is: what right have I do be annoyed? I am one who stresses about if/how to have an elevator conversation. Should I tell the woman "have a good one" as she gets off a different floor, if we've had at least one exchange during the ride?

(While we're on the subject of elevators: I once had this mentor in the corporate world who I'd meet with to discuss...I don't know...being more "professional," I guess. He suggested we ride in the elevator together and he would critique afterward the way I interacted with strangers. I just couldn't do it. The thought completely intimidated me and left me feeling that I'd start hysterically laughing every time I knew he was watching me).

There are times I prefer there be no one at the park or in the library kids area, because sometimes I'm just not in the mood to make small talk. You introverts out there will understand. I like people, and I love having conversations, but sometimes standing there and chatting and keeping a conversation going feels like I enjoy them, but I'm tired after parties...particularly the company parties Dan used to have. Those were the worst. Nod and smile; try to remember people's names; attempt to look sophisticated while drinking alcohol when my drink of choice is usually a Diet Coke. Yikes.

I imagine that stress all the time. The stress of being on the spectrum and trying to navigate the world, of being expected to engage and sometimes wanting to engage while simultaneously being exhausted by the whole thing.

"Mamma, I just don't want to talk right now!" Ethan will say sometimes in the car. And I'll feel frustrated, although I don't know why. I'll feel frustrated, when sometimes I am the one riding in the car with others, and a part of me feels drawn to just look out the window and take it all in, rather than gab. A part of me feels annoyed at being shaken out of my own little world.

Yup, my boy. I know. How could I have missed it? And so I pray for patience and understanding, in those little moments when I forget who he is, and forget who I am.

Sunday, November 17, 2013

Reasons Why a Third Baby Will Make My Life Easier

Well, here we are in November, and baby #3's arrival is T-minus 11 weeks away (or, if she's anything like her brother, closer to 9 weeks from arriving - yikes!).

Can I be allowed to whine?

I'm exhausted. I'm exhausted, and yet I know there are moms out there living my current lifestyle all the time, and I don't know how you do it. You see, all of us in our house are the type who don't like to be overscheduled. Anna can only handle one or at the most two extra activities or she loses steam. Ethan melts down when he's rushed places all of the time. Dan starts to grumble about being "overbooked" when we run from one activity to the next all weekend. And if I don't have quiet time in the morning, and a slot of time during the day to putter and try to get my house together, I feel parts of my sanity slowly chipping away. We are not the family running from home to school and work to activities and sitting down at 8pm to eat. Or when we are, all of us start to get very grumpy.

However, all of us have been asked to adjust a bit, with starting a business. For the past two months I've found myself in some ways out of my comfort zone and in other ways back in it. I've been working my old job, the one I had before leaving to stay home with Anna when she was a year old. Ironically, I've been filling in for someone else on maternity leave before having my own baby. I know the ropes. It's gone pretty well. I enjoy the people I work with.


I am not used to this. I now know why a little part of me always knew that I would not be a full-time working mom (unless I absolutely had to). I'm not really cut out for this.

Thanks to years of semi-insomnia, I tend to wake up every morning by 5-ish, no matter how late I want to sleep. By 8:20 I'm out of the house, bringing Ethan to school and rushing up to work. I leave just in time to get him from school and come home. Then with Dan working so much at the business right now, I'm on duty with the kids most nights until around 7:30-8pm. Saturdays are a mad dash to get laundry, grocery shopping and other chores done while Dan works all day. Sundays are a little better but not a break. Throw in the work I attempt to do from home for either my current job or marketing for our own business, and there's not much downtime. And now leaves have fallen in our backyard -- the bane of our existence each autumn. There are so many leaves, we can't ignore them. I've raked so many leaves this weekend that when I lay down to bed last night I literally saw leaves and rakes and piles.

I know...whine, whine, whine. This is life. I am trying to stress less and be more positive. And so, in the midst of all of this, I've realized something:

Life is so crazy right now, having a baby will probably feel like a break.

Okay, maybe I'm delusional. But I know one thing - having baby #3 will be a break from expectations.

Here's the way I see it, and forgive the gross generalization. It seems to me that many people who decide to stop at one or two children are the more orderly, organized types. The ones who know what they can handle and know when they're over their heads. These are people who talk about not wanting to be "outnumbered" by their kids. These are people who would like to maintain some sense of composure and control in their lives, to still be able to afford family vacations or still be able to get out of the house relatively easily.

I know, I was one of them. So was Dan. I find it almost laughable that we've chosen a route in which everything is now completely out of our control. This can be terrifying, or I suppose it can be refreshing. I've heard numbers of people say, "The third kid is what really threw us. I gave up trying to keep it together."

Well, I've felt that way for three months, so this is good preparation. Thank you, baby girl, for relieving some pressure. By that I mean:

1. When I have baby #3, I can better excuse the messiness of my house, because hey, everyone says they threw in the towel on really being organized after the third one.
2. When I have baby #3, at least my semi-insomnia will be worthwhile. I can nurse the baby rather than lying awake thinking of all the things I have to do. And I won't even feel tired because I'm already used to feeling tired. Woo-hoo!
3. When I have baby #3, I can feel better about the trash in my car, the forms I lose, and my lack of involvement on the PTO. The newborn excuse is better than the I just can't juggle a million things at once excuse. I am so far from SuperMom, it's not even funny.
4. When I have baby #3, I will be back at home instead of running around everywhere. I can justifiably hunker down for awhile. And that sounds, really, really nice, even if it involves diaper changes and spit-up.

Don't get me wrong. I like my job. And I'm really excited about us starting a business. I'm not the only one making sacrifices. Dan hasn't taken a full day off in four months.

It's just a really crazy time. And the holidays are coming. Yea! Seriously, that wasn't just sarcasm through gritted teeth. What's a little more hustle and bustle? I've done a lot of Christmas shopping already. Now I just have to find where I put the presents. And figure out a Christmas card...and think about teacher gifts...and...
"I can do all things through Christ who strengthens me."
- Philippians 4:13

Friday, November 15, 2013

My Little Nagger

Well, now I know how I sound.

It's no secret I have a nagging problem I've been working on for some time. Sorry, I don't have a nagging problem -- I have a problem with nagging. I have trouble stopping myself from offering what some in my family would call...unsolicited advice on certain matters, repeatedly.

I'm doing better. I'm learning to bite my tongue (at least with Dan; not so much the kids. To me they're still at the point where they NEED nagging to make it out the door or to do homework). But as my nagging diminishes, Ethan's has ramped up.

What gets me is his nagging is usually about something I've already thought of; something I'm trying to do but haven't gotten to yet. My brain works in a similar way. I nag myself all of the time. Sometimes I wear myself out listening to the voice remind me of everything I haven't done. Now I have Ethan's voice added to the mix.

He sees the hamper in the hallway piling higher with clothing. "Oh mama," he admonishes. "Those clothes are getting too high. You need to do laundry soon." Thanks, Ethan.

About his overdue library book? "You need to put that in my backpack for tomorrow. I have library. That library book has been here for too long!" I will, Ethan.

Looking outside, at the leaves that assault our front and backyard each fall: "We still have 50 more leaf bags to go! How are we going to do it? We don't have enough time!" I know, Ethan, I know.

Sometimes I find it quite funny to be lectured. The other night, as I put a new pair of socks on him before bed to keep his feet warm, he said: "In the morning, when you get my clothes, don't get me any socks because I already have socks to wear."

Other times his nagging is every bit as annoying as mine must sound to everyone else. Especially when it's about the same thing over and over. Breakfast is a good example. In Ethan's perfect world, every day he would have a bowl of maple & brown sugar oatmeal, milk, and a plate with a banana, piece of cheese, and Flintstone vitamin (this is his "big" meal of the day; he usually picks at his dinner). God forbid I forget the cheese or we run out of vitamins. God forbid Dan makes him breakfast. That's always good for a laugh because then he nags him. "Where's my banana?" "I like my banana on a plate." "I don't have a vitamin." "Why did you give me this cup to drink from?"

Thankfully, and I mean this whole-heartedly, Ethan does not flip out when things are out of order. He just stresses and whines. Very much like his mamma. And his breakfast regimen is a big one. When the vitamins are gone, Ethan is sad. "We need to go to Target and buy more," he announces every morning, forlornly. When the maple & brown sugar flavor is gone, there is even more sorrow. "Please mama, when can we go to BJ's and get more?" he'll say, while grudgingly eating a different flavor. At least once a week, I force him to change it up and eat say, a bagel or pancakes, so we don't get too trapped in routine.

As I was writing this, Ethan came down the stairs. One of the first things he did to start the day was to ask (yet again), "When are we going to take down our Halloween decorations? They need to go in the basement." We've had this discussion before. I've told him the decorations up are NOT Halloween decorations, they are fall decorations (i.e. scarecrows and fall leaves; never mind the "give thanks" banner). I tell him we can leave them up through Thanksgiving. He doesn't get it.

"Well, when are we going to move them, because they are bothering me?" he asked again.

Sigh. This is what I get, for the eons of my own nagging.

After that I went into the kitchen to make breakfast...and was summarily chided because of Ethan's watch. He noticed it was different from the stove clock and slower than the radio news at turning to 7 a.m. I made the mistake of telling him his watch was a little slow and was lectured about how his watch was not wrong (because daddy bought it at the Watch Museuem, duh!), and that I needed to make it match the time on the stove. Seeing his watch say 7:03 when the one on the stove says 7:04 is the type of thing that really bothers him.

I tried to explain the concept that his watch was almost right but just a few seconds off. This went over his head. We attempted to consult the atomic clock with the official U.S. Eastern time zone time. He still insisted his watch was right...and wanted me to change it. I found myself getting increasingly annoyed. This had gone over the top. All I wanted to do was make his darned maple & brown sugar oatmeal, banana, cheese and vitamin breakfast.

Then I remembered the minutiae arguments I've had with Dan over the years, over things like the toilet paper roll or the placement of the recycling bins. Nag, nag, nag. And again my child is a mirror. I look and have to sheepishly smile. The apple doesn't fall far from the tree.

Monday, November 11, 2013

The First Book I Ever Saw About Autism

Picture this. Circa 1985. Autism was much more of a mystery than it is today. No one talked about it on the news. I'd never met another person with autism or another person who had a sibling with autism. Heck, I'd never even come across a book about autism. And then, either at the library or a book store, I can't remember which, I saw this:

Inside Out, written by Ann M. Martin of The Babysitters Club fame (c'mon, eighties and nineties girls, you know you read the books), tells the story of an 11-year-old boy with a severely autistic younger brother. The book opens with the big brother feeling utterly exhausted after dealing with his brother's overnight, sleepless antics.

For the longest time, I wouldn't have been able to tell you any more of the plot, because I couldn't bring myself to read the rest of the book. I'm not quite sure why. All I can say is, I found this book when I was about 11 years old. For a moment, I literally had the breath knocked out of me. The feeling was similar to the first time I watched the show Parenthood (in which one of the characters has Asperger's). There was a sense of relief, of validation (oh, so it's okay to be cranky because my brother just dumped a bunch of food out of the refrigerator? You mean, I'm not an evil person?). Again, this was before the days of sibling support groups or Autism Speaks Walks. I thought we were aliens and that no one lived our lives.

But then, it was almost too much. The book hit too close to home, and made me feel things I wasn't ready to feel. So I shoved it back on the shelf and into a back corner of my mind.


Last week after her concussion Anna needed to not only stay home from school, but not read (in addition to no computer or TV), either. Anyone who knows my girl knows how torturous a prescription that is. I told her I'd find time between working (my current part-time) job from home to read to her. Wednesday morning I shot over to the library and attempted to find a stack of books she hadn't read yet...and my eyes fell on Inside Out.

I knew: it was finally time to read it. Together.

And so, over the course of the next couple of days, we would settle down into the couch and delve into this story about the boy just a little older than Anna with a little brother not much like her own. "This is what my brother was like, growing up," I said to her as we started. Anna's not one to talk about feelings, even with prodding, so I could only wonder, for the most part, what she thought. Her experience is so vastly different my own. I doubt she tells people about Ethan because in most cases, especially during brief interactions, he blends in well as just a regular kid. Her brother scored in the 97th percentile on recent kindergarten brother still cannot write his name without help. With her brother we are able to see some of the "cute quirks" of autism (the love of numbers, lights, and alarms; preciseness; the literal mind) while my brother has exhibited the more difficult side, like destructive and sometimes self-injurious behaviors.

I'm not sure what she thought, but I will say this: for those next few days as we were reading the book, Anna seemed extra especially happy to see Ethan home from school. She went out of her way to play and interact with him. And while that could have been because she was really, really bored, I wonder. I wonder if in a little part of her brain, she was feeling thankful: that her own brother could talk, and was potty-trained, and wanted to play.

And I wonder if, as we read those scenes about the big brother trying and trying to engage his little brother, and his frustration when his overtures are ignored, if she was thinking back to the times even now when that does happen, and if she was realizing it's okay. It's okay to be frustrated. Her feelings are worth something.

For the record, the book isn't exactly "PC" when it comes to autism. Some of the (ABA) teaching techniques seem downright antiquated, and demeaning. The word "retarded" is used liberally. The way autism is described seems a bit off; autism seems to exist soley as a condition meant to be eradicated. As I see with Ethan, that's not always the case. There are some truly wonderful things about his form of autism. But that is just our story, right now.

This was 30 years ago. The Judy Blumes and Beverly Clearys of the world were not touching on the subject as I scanned the stacks in the children's section of the library and bookstore. But someone did. And so, wherever you are, Ann M. Martin, thanks. Thanks for writing a book that meant something by just existing. You helped me see I was not alone, and that my feelings mattered -- even if I wasn't ready to face them at the time.

Saturday, November 9, 2013

Two Novembers

Anna just a few weeks after her first head injury

The first time, Anna was about to celebrate her 5-month birthday. November 17. Early darkness, turkey burgers cooking on the stove. I took Anna out of her bouncer seat on the floor and held her in my arms for a moment while I did something over the sink. Then I turned quickly, completely forgetting the seat on the floor. In split seconds I felt myself falling. Even as I fell I was thinking, can I keep her in my arms? I tried; I really tried. But after tripping over the chair and falling hard onto my knees, the force knocked my baby loose. I heard the sound of her head hitting the floor, and then her screams.

The next hour was a blur. Panic. I called the doctor and bundled up Anna for the hospital. Dan was still at work - I called him and let him know where we were going. Up I sped to the same hospital where I happened to be working at the time. Anna was drifting off to sleep. "Please don't go to sleep, please don't go to sleep," I kept saying and crying, trying to jostle her and drive about 85 miles an hour simultaneously. I knew sleep and head injuries went hand in hand.

In the ER she was bouncy and bubbly again. Relief. Only, one side of her head was starting to swell. Bigger. Then bigger. They did a CT scan. The site of my baby lying there wrapped up like a burrito in blankets so she wouldn't move made me want to laugh and cry simultaneously. Then there was nothing but crying when they told me she had a brain bleed and they would need to admit her into intensive care overnight.

All night, the beeps of monitors while my baby slept in a cage-like crib, nurses waking her every two hours to check on her and shine lights in her eyes. I tossed and turned in a chair. I thought about the parents who were there doing this all the time, the families of sick patients I wrote stories about for hospital fundraising videos and magazines. This was their life. Empathy swelled in me.

Guilt also swelled. Dark, oozing, suffocating guilt. I saw the scene play out in my head again and again. How could I have been so stupid? How could I have let her out of my arms? The thoughts assaulted me over and over, like the pictures in my mind I kept seeing of her hitting the floor, again and again. Weeks later, after the four CT scans and the swelling gone down and the brain bleed (in addition to a small skull fracture) were declared gone (on my birthday a month later - what a present!), I would still rock her to sleep and try not to cry. I'm so sorry; I'm so sorry, I'd murmur into her sweet smelling head.


Fast-forward nine years. Another late November afternoon. Dinner cooking. I heard a crash and couldn't figure out where it had come from. Ethan was right nearby and I'd thought Anna was studying in her room. After calling out to her, I went to investigate -- and found her crumpled in the downstairs bathroom tub. Her face and lips were white. She was crying and mumbling and talking in a disoriented voice about standing on the bathtub to see in the mirror and falling and hitting her head.

I knew we had to get her to the doctor. In that moment, there wasn't time to think about the past, yet the experience gave me the smarts to know how to call the doctor, make sure she could walk okay, get to the hospital, keep her talking in spite of her (once again) sleepiness.

Anna was petrified. She hates hospitals and doctors. She generally hates being unwell in any way. There were lots of tears and screaming. There was the hospital (a different one this time, closer to home) and lots of discussion. Should she get the CT scan again after having so many (they like to avoid them if possible)? The doctor went back and forth, researching and discussing with colleagues. Kind people came in and out and did their part to make us feel at ease. They decided to watch her closely for several hours. The swelling didn't get much worse than it already had. She managed to keep down (barely) some food and water. A neurological exam looked good. Four hours later we were headed home, with Anna wincing at every bump I hit on the road. The diagnosis? Most likely a concussion. She would need lots of rest.

It wasn't until the next day that we were both able to take this in. Isn't that the way these things always happen? You move in crisis mode, then get a breather and actually have time to process what occurred. For Anna, this meant realizing she was afraid of the bathroom where she fell. She kept going upstairs instead. She told me if she looked at the tub, her head hurt worse, and that she kept seeing pictures in her head of falling.

I knew just what she meant.

We had a series of small talks, as she lay on the couch and tried to make herself rest (not her strong point). I told her about the time my school bus got in an accident and how I'd been afraid to ride the bus after. I talked about having to fly on a plane just a few weeks after 9/11, and repeating the 23rd Psalm over and over as we lifted into the air. And I told her again the story of the day I fell holding her, and the pictures I kept seeing in my head, again and again, and the way I kept hearing the sound of her head hitting the floor.

After several hours we walked gingerly into the bathroom together. I let her stare at that bathtub as long as she dared and then we left. There were hugs and prayers. Later, she went in again. Slowly, baby steps, confronting her fears.

And now that we were moving past the moment I thought again of nine years ago. I thought as I often do how, while I wouldn't have wanted to live the experience, I was profoundly grateful to be able to use what I'd learned to help my daughter. That sleety November day the car slid under our bus...the paralyzing fear after September 11...the trauma of accidentally hurting my baby girl...they weren't just bad things that had happened. They could also be of use. Every experience can have a purpose, and it's not always for us.

I thought about the grim feeling of guilt and the way it had gnawed at me for so long. I saw the way guilt can make any experience so much more difficult to bear. This time around, Anna had been standing on the bathtub, something she'd been told before not to do, something she'd been warned was dangerous. I saw that a good deal of my terrified feelings in 2004 stemmed from feeling that this is all my fault. I thought of others who may be living with burdens on their backs.

It's no way to live.

And I remembered now what I had remembered then, after the weeks turned into months of secretly feeling I was a bad mom who had somehow permanently damaged my child. How could I have let her go? I had asked again and again. And yet in one sense that was exactly what I was asked to do, that we are all asked to do.

I could do my best, but know I had to let her go and trust God with her little life, because there would come a time when she would no longer be a baby that I could keep in my arms. Things would happen, like this other night in November years in the future, and it couldn't all be up to me. I could never be perfect. And that was okay.

I could let her go.

Wednesday, November 6, 2013

On the Tooth Fairy and Other Mythical and Not-So-Mythical Matters

Anna searching her stocking, Christmas 2007
Okay, so here's the thing. Some people may have a problem with this, but hey, I am just being real.

I've never been "big" on Santa. Or the Easter Bunny. Or the Tooth Fairy. Part of this has to do with my upbringing. While I am not a Christian who is going to pronounce Santa as "evil" or claim that anyone who brings up their kids to expect a basket from a big white bunny is sinning, something about the whole thing doesn't sit right with me. I guess because 1) if I'm raising my child with our faith, what does it mean if I tell him all sorts of stories about men in red suits and tiny winged creatures who trade teeth for cash, and then follow that eventually with, "oh, but not really?" What is to stop my child from someday wondering the same thing about faith lessons, and stories of the Bible, and our belief in God? It feels like a matter of trust and 2) Any kind of "lying" bothers me more than almost anything. When it comes to lying, I become very spectrum-like. I hate dishonesty. I am very black-and-white. And getting my kids' hopes up about something like Santa Even if the rest of the world sees it as good fun.

With Anna we pondered, what to do? While I'm not a big fan of mythical figures, I'm also not big on sucking all of the whimsy out of one's childhood, and having my kid be the one to crush others' hearts by announcing to her class, "There is no Santa!" So we decided to take a subtle approach, and this worked very well. We didn't have her leave out carrots for the reindeer or write letters to Santa, but we didn't shout the lack of Santa's existence from the rooftops, either. The few times she asked about presents and where they came from, we turned the question back to her: "What do YOU think?" That always quieted her. Slowly, over time, the truth became obvious, without a punch in the stomach of disappointment.

But now we have Mr. Literal, the one who just proclaimed at dinner the other night that he likes non-fiction better than fiction, and that the story his teacher was reading about animals that wasn't "real" because the animals could talk. Ethan is not subtle. Something is real, or it's not. If it's not, he's going to announce this knowledge, loudly and proudly. But if people are singing songs about a guy in a suit of red, if a teacher of all people is talking about Santa, if they are making movies (hello Rise of the Guardians) about the Tooth Fairy and Jack Frost and the Easter Bunny explaining the elaborate processes behind how this whole thing works, it must all be real, right? Heck, we get a kick out of watching NORAD track Santa every year. Grown-ups report about where he is on the GPS. The government is in on this thing. It's got to be legit, right?!

I tried the whole "what do YOU think?" with Ethan about Santa, and the Tooth Fairy. He seems firmly entrenched in belief, belief that we didn't put there but that he seems to have gained just by osmosis in his everyday environment of school, media, and books.

To make matters more complicated, yes, there is a small part of me that rejoices in the fact that he anticipates something like Santa. How could I not, when back three years or so ago I wondered if he would ever get excited about Christmas or birthdays at all, if he would ever care?

I don't want to be someone who brings my kids up with murky ideas about reality vs. myth. And I'll be the first to admit that raising children has challenged me to examine what I really believe, and to ask my own hard questions. I am not naïve. I know that those who don't have a faith walk see my Christian beliefs as little more than another fairy tale to add to the list.

When the questions about God come up, the really hard ones? I can't even go there right now.

But in this moment we aren't there. And all I can say is I have a better idea of what I'd not like to do rather than what I would. I don't want my child desperately believing in something I tell him, only to be let down. And I don't want my child being the one to tell every other child he knows that everything they believe is not true.

And so we straddle the middle ground once again, and I pray for wisdom, because even though this seems like a little thing, I guess it's not. I know the majority of people would say I'm over-analyzing, that this is all in good fun, that I shouldn't obsess over permanently scarring my child by telling him the wrong thing.

I know. But in some ways we're not talking Easter eggs and stockings hung by the chimney with care. We're really talking about belief and faith. We're talking truth, and what we instill in our kids, and why, and how. We're moving, in a sense, beyond Santa to the downright metaphysical.

And so I sit, and wonder. I wonder about wonder, that little part of each of us that wants to believe in something beyond ourselves and the every-dayness of our world, something magical and beyond logical explanation. This part brings me peace...that that longing was borne in us. That's why we create stories. Without even realizing, from very early on, we are asking our children to believe.

Saturday, November 2, 2013

A Sound in the Night

I heard the music singing from the CD player at 3:30 a.m. The Christmas songs the kids are practicing for the choir at church were blaring from Ethan's room.

At first, I didn't get up. Just a few weeks ago, when I asked why he sometimes turns on music in the middle of the night, he said it was because he wakes up and feels scared. And while I again reassured him he could talk to us in the night if he was afraid, I thought it wasn't such a bad way to cope.

I fell back asleep and woke to the music playing again, and then a third time. Then I heard the door open to Ethan's room and got up to see him.

"What's that noise?" he asked in the hallway, sounding wide awake. His music had stopped.

"What noise?" I asked blearily.

"THAT one." He paused. I paused. I heard nothing. We've realized for awhile that Ethan has super-hero type hearing, and can pick up sounds at decibels and frequencies we have much more trouble hearing."What is that? It sounds like an alarm?"

I focused and listened hard, then I heard it. A very faint beeping kind of sound. I walked closer to his window and leaned closer. A-ha.

"Ethan, that's a cricket!"

"A CRICKET? It doesn't sound like a cricket." That's because crickets around here don't last much past October. We'd already had a light frost or two. It happened to be an unusually mild night, and this one cricket was chirping a low, slow, lonesome chorus.

"It IS a cricket, Ethe. That's all."

"It's not an alarm?" I realized he was probably thinking of earlier, when Dan had said the batteries were low in a smoke detector over at our business and the thing had been chirping incessantly every 15 seconds.

"It's not an alarm. Is that why you turned on the music? So you couldn't hear it?"

"Yeah..." His eyes were full of relief, but getting heavy. I tucked him back under the covers.

In the morning, I thought about something you hear a lot in relation to kids and autism (or maybe sometimes just kids in general). Behavior is communication. Kids rarely behave randomly. There's a reason they act the way they do. That's especially true for those with special needs who might have trouble articulating exactly what they're thinking or feeling.

I am overwhelmingly grateful that Ethan has been able to express to us, this past year or two, some of the motivation behind what he does. He could tell me, thank God, that he turns on music at night because he feels scared or to block out sounds that he hears better than the average person.

I imagined him being less verbal, or non-verbal. I thought about the things I see sometimes, watching a person with autism. I don't just mean the obvious covering of the ears to block out sounds. I mean the night waking, or talking loudly, or flicking fingers in front of the eyes. I mean humming, or spinning, or tapping. If only we could see what they see or hear what they hear. If only we could feel what they feel. Would we then see -- that the humming or tapping is perhaps to block out a sound that's too loud that gives them a "nails on a chalkboard" feeling? That the hands in front of the eyes are to cover the over-abundance of light that flickers in a way others can't understand? That the spinning is to make their body feeling something the average person feels, to find their place in space, or to avoid a feeling of being lost in their own body, that others could never fathom? Do they wake up at night because things are running through their heads that they can't make go away? Because they smell something so faint but so utterly disturbing?

This is what is so important to remember and so difficult to remember, when we see behaviors that are quirky and odd, far outside the norm. They are just different types of coping mechanisms. Not much different from blasting Christmas songs at 3am, to drown out the lone cricket, to feel less afraid.