Science facts

"Hey, mom - did you know that most birth defects are caused by something the mom ate or did during pregnancy?"

I am helping him get his compression stocking on, something we do every day.  It's too tight for him to be able to do it himself, even though this week he will be twelve years old, and he is nearly as tall as I am, and weighs almost as much, too.  I have just pulled it up past his knee, and I'm looking at him as he is talking, smiling.  But I was caught off guard, and for the split second it took for me to register what he'd said, he saw my secret, the thing I've battled every day since he was born and we discovered that he had Klippel-Trenaunay Syndrome.  The fear that it was my fault, that I had done something wrong, even though I've had specialists tell me it's just something that happens sometimes, just a quirk of nature brought about by a wrong turn on a strand of genetic material.

I recover as quickly as it registers, but I'm caught and he...he is mortified, horrified that he has hurt me.

"But I'm not blaming you, I just have K-T, and I was born that way and I wouldn't want to be any different!  I love you and I know you didn't do anything wrong, and I only think it's sometimes that it happens, maybe most of the time, but it doesn't MATTER because I LOVE who I am and I love YOU, and if I didn't have K-T I wouldn't be me..."  He is in danger of running out of air, and I stop him.

"Sweetheart - it's okay.  I know you were just telling me something interesting that you learned, and it's just science.  Sometimes even in science there are variables.  I know you aren't blaming me.  I love you just as you are, and I know you love me too.  Please don't worry, I'm okay."

We have a ritual after his stocking is on - we have a big hug.  Today's hug is tighter than normal, and lasts twice as long.

"Thanks for helping me with my stocking, mom.  I love you."

"You bet.  I love you too."

Good Thoughts Needed

Please send good thoughts to Eli. He's around Joe-Henry's age and has kt. He is in the hospital with septic shock in LA because his leg is being attacked by a flesh eating bacteria. He's had two surgeries and is on a ventilator.

No kid should ever have to go through this.

the land of worry

When Joe-Henry was first born, it was clear to the doctor's but not to us that there was something different about him. All we saw were these eyes, wide open, that took in the whole room and the measure of everyone he saw. But the nurse noticed it first: He had a large birthmark that ran the length of his left leg, and two of his tiny fingers on his right hand were, well, not tiny. Or at least not as tiny as the other three fingers on that hand. There were whispers amongst the staff, and eye contact, and after his bath, and some initial routine baby tests, they whisked him away to the NICU. After days of tests and more tests, days in which I could not feed him lest he have involvement in his intestines, it was concluded that he had something called Klippel-Trenaunay Syndrome. We could barely say it at the time, sleep addled and worried as we were, but in the years since, it has become another member of our family. It is something of an identity - not just for Joe-Henry, but for us, his parents, as well. It won't always be that way, there will come a time when he will make decisions about how to deal with it, if indeed he has to, on his own. But until then, it's mine, too.

We have been fortunate, so fortunate. His case is fairly mild, and his involvement does not cause him constant, debilitating pain. There have been a few bouts of cellulitis, which have been scary, and some odd hiccups here and there, but mostly it's just the syndrome's underlying there-ness that has caused my hair to turn white in places. It has just been this other creature sitting in the corner that looks me in the eye when he gets an odd symptom, as he did last night, when his left leg wouldn't bend.

I took him to his pediatrician today, who recommended ibuprofen for a few days, and if it gets no better, an mri. I've been in touch with the folks from the support group, sending emails, receiving knowledge and hope due to their familiarity with this terrain. I've requested a referral to Shriner's Hospital in Portland, because I've heard of an ortho specialist who has a lot of knowledge about kt, which is almost as rare as the syndrome itself.

I'm doing my best to take action, to stay positive, to not worry too much. I am staying within my worry speed limit, working hard not to get too far ahead, to not picture my boy being wheeled into surgery, or hobbling about as a grown man. But it's so hard. This is when motherhood is hardest for me - I can soothe away bad dreams, stomach aches, trouble in school, temper tantrums. But this - this is just me keeping the monster at bay so that he doesn't pick up on it. I busy myself with tasks, I keep my voice cheerful, but all I want to do is have someone, someone who knows for sure, tell me it will be alright. And I know that just isn't going to happen. Because no one really knows for sure, do they? That is the cold, hard fact of parenting: there is so much that is unknowable and out of our control.

That is the nasty bitch of motherhood, right there.

A good thought needed

Last night, as Joe-Henry was coming up the stairs from playing music with his friend next door, he complained that suddenly he couldn't bend his knee. I thought maybe he just tweaked it a bit on the stairs, but after a while it became clear that, no he couldn't bend it much at all, and it hurts him when he sits, and getting on the floor (which he has to do at school) is nearly impossible. His left leg is pretty involved with his k-t, and I'm worried that it's some symptom of his this blasted syndrome, and even more worried that there is no one here to deal with it. I'm not panicking, but my intuition is telling me it's not just growing pains, either. I think I'll be taking him to the doctor today, I'll let you know.

In Five, Four, Three....

Time is giving me the business these days - it is moving too fast, and I can't keep up. My bones and muscles strain at the effort, but it just isn't happening. My dishes sit in the sink for two days because I've been gone from sunup to sundown and so has my husband, my laundry is piled high, and my son is a few inches taller than he was this morning.

He has a birthday coming up, and it is striking me particularly hard that he is no longer little. I mean, of course, he is, but now he's a KID. Not a baby, not a toddler, not even a little boy, really, but a kid. And a boy kid at that. Gone is the little one who thought pink converse were all the rage, and wanted to be Ariel for Halloween. This kid hides his eyes when he sees people kiss, and says loudly and emphatically (YUCK!) He still tells me that he'll play with girls at recess, but more out of necessity - with his syndrome, he just can't run as fast as the boys, so he's stuck there playing on the playstructure. But he's NOT playing house with them. He is driving a bus, or a train, and if they want to play house, well, they'd better move on back. It will be interesting to see what happens when he sees his favorite friend in the world - Grace - next week at Disneyland. Will they fall into their old, easy friendship, or will it be something new, fraught with gender issues? My bet is that they'll be a little nervous at first, but then will relax into their soulmate status, and have the time of their lives.

I always feel like I'm shot out of a canon when his birthday rolls around. Thanksgiving arrives just as I'm cleaning up the wrapping paper from his birthday, and then Christmas, with it's preperatory madness is breathing down my neck. But this year, it's something bigger - it has more to do with years than months or weeks. Decades, in fact. Soon, before I know it he will be ten. When I held him in my arms in the hospital, ten wasn't even in my vocabulary. People who had toddlers were bearers of ancient wisdom, and people with ten year olds, well, they were just too old to remember what it was like. There was no way they could even remember that far back.

I have news for my old self - that might be true of some parents. But I remember. If I close my eyes, I can still smell my baby. He doesn't smell like that anymore, not by a long shot, but I'm going to keep sniffing, because someday, sooner than I care to realize, he won't let me sniff him at all. I still will, of course. Surreptitiously, while getting my mandated one hug per visit home, when he comes back from college on break with mountains of laundry and stays for fifteen minutes because he's heading out with his friends. And honestly, it's what I want for him. That his luck holds with his syndrome and that puberty doesn't bring about health challenges, and if it does, that they're minor and maybe only embarrassing, but no not even that. I'm his mom, I can wish for that even if it isn't necessarily realistic. And I fervently, fervently wish that he has good friends that love and understand and honor him, and make him laugh, and appreciate his gifts and challenges. I have friends like that, and it makes the world a much better place.

In the meantime, he's still six for another six days. I think I'll go take a whiff right now. I'm still bigger than he is, for at least another year.

a new day

At 2:30 a.m., he wakes, vomits again, cries, then wants to discuss heaven. What is it? Does everyone go? Does everyone believe in it? Also, why do they advertise Taco Time with a cactus and not a taco?
Life's big questions. I'm glad to talk about it, but have no answers that satisfy him.

When I woke yesterday morning, it was too early, my eyes too red and dry from no sleep. I was pacing in my worry cage. Joe-Henry moaned in bed, begging me to help him feel better, to make it stop. He complained of hurting in his shoulder, his neck, his heart. He was unable to keep anything down. He ran a fever, his face so hot to the touch, his cheeks so flushed and pink they reminded me of two hot coals. I give him tylenol, telling him it would make him feel better soon. (But not soon enough for me.)

Then yesterday at 4:00, the miracle happened. He had kept down the jello, the soda crackers, the gatorade. He had slept through the afternoon. He woke, hair damp, cheeks a more beautiful pale pink, his eyes glittering with mischief. "Mom. Better get the basket! Nah.... I'm just kiddin'"

I left the room laughing. His voice, his strong voice, clear and sparkling. The tears came quickly, but didn't last. They were indulgent, the tears of a tired, grateful parent. Done with the vigil, on to the next task.

I am guilty of over-worrying. With his syndrome, I always worry that it's a blood-borne infection, and not just some random, horrible childhood virus. I spend at least twenty four hours, sitting on my worry, waiting it out, tricking myself so that I won't call the doctor again. Read another story, attempt another sip, administer the tylenol. Worry, distract. I pray my clumsy prayers, not even sure what I believe, but remembering the peace it gave me as a child. It doesn't give me peace, but it feels good to admit my failure, my utter helplessness.

This morning, after a good night's sleep, we are both new. Pancakes, juice, water. I can see all of it in his tummy, his body so skinny from the last few days that I can make out this bite of pancake, that bite of veggie sausage. One more day home from school, but there are plans to get dressed, to go to the post office to mail Grandma's mother's day present, to stop at the Walgreens and get him the rocket launcher that he gave to the boy next door for his birthday. It was the promise of this last thing that helped him turn the corner, I admit. I told him when he was at his worst, that we would get him one when he got better. And since it worked, I will fulfill my part of the bargain. I don't bribe that often, especially with "stuff", but I was ready to make any deal to get him to the other side.

Gratitude for the new day, for the annoyances, the dishes to be done, the laundry to be sorted, washed folded. The healthy boy on the couch watching tv.

An Amazing Age

I started my day by reading a great post at my pal Suttonhoo's blog about The Economist article that says internet search sites are taking over porn sites in popularity. I've been thinking about the fact that my son knows that "Google" can be a noun or a verb. The other night after reading a book that we love called Buddy Booby's Birthmark, we Googled "red-billed booby" & "Galapagos tortoise" and he was able to see more pictures, and learn more about their habitat.

And this afternoon, I checked my email and noted that in the slew of email I get from the k-t support group that there was a live webcast of a vascular anomalies clinic from Boston Children's Hospital, and all I had to do was click on the link to watch these incredible doctors, some of the top doctors in the country, going over cases of children from all over the country with rare vascular disorders. The term Klippel-Trenaunay Syndrome tripped off their tongues like they talked about it all day, instead of wondering how to pronounce it. I couldn't help but be fall on my knees grateful for this wondrous technology that is making this world smaller, more accessible, so that my son, by the time he is old enough to start making his doctor's appointments, will be able to say "here are a few websites that will give you the information you need", or "you can check out the webcast", or even just find others like himself.

Support, contact, knowledge. What an amazing age we live in.

up, up and away

Can I just say, that too much fun leaves me pooped? Smiling like an idiot, but pooped.

I'm not talking about the kind of fun you might be thinking of. No, this was the kind of fun that you have with lots of people around (and I know, some people DO have THAT kind of fun with lots of people around, but I'm just far too Lutheran for that).

For not only was our weekend with friends stupendous, we did stuff we don't normally do. We were "outdoor adventurers"! Well, almost. Joe-Henry got to join his friend Hazel at an event sponsored by the Washington Department of Fish and Wildlife called Fishing Kids. Not only did he get to catch a fish, he got a t-shirt AND he got to keep his pole! All for $5! Do you know what this means? It means I have to learn how to clean fish without throwing up. And then, to top it off, yesterday I exhausted myself watching Joe-Henry rock climb at REI. And I did it all without a harness or special shoes.

It was unbelievable. He and I had gone there last Thursday to get Charley some special panniers for his bike as an anniversary present. I knew that I wasn't getting him exactly what he wanted, but I needed something to put in the gift bag. We signed up to become members, and when we did, the clerk handed Joe-Henry a ticket for a free climb. So yesterday, we went back to make the gift exchange, and while Charley shopped (and shopped - he's a Libra, after all), I wheeled Joe-Henry around in the shopping cart. He was all listless energy, until he saw an eight year old boy, scaling the rock climbing wall.

"MOM! We have that ticket! I want to try!" I looked over at Charley, entranced as he was by moisture wicking socks, and said, "okay". We'd be there a while, why not. But I had my doubts about whether or not he'd actually do it.

The first hurdle was finding shoes that fit. I honestly didn't think it could happen, but after meeting William the Conquerer of All Obstacles, Coach Extraordinaire, I knew that they'd find something. And they did. A pair of size 6 climbing shoes. That's an adult size 6. Then strap him into the harness, and away they go. William was all positive energy, and Joe-Henry was undaunted, but after fifteen minutes of trying he got no further than two feet off the ground. William asked him if he wanted to take a break, because there were some other kids there waiting their turn, and he said "if it's okay with your parents, and you have the time, you take a long break, and we'll try it again. Or come back on another day, and we'll give it another go." I honestly thought we were headed home right then, until Joe-Henry turned around and I saw his eyes.

He'd had a tiny taste, and he was determined. And he is my son, after all. I can be a terrier when I have to, and as they say, "the apple doesn't fall far from the tree." Charley was done shopping, and wanted to go, but I said, "I think he needs to try this again". Then Charley saw the look in Joe-Henry's eyes, and he knew it too. He went to grab a cup of coffee, and came back, and we waited. We watched as probably eight kids scaled the wall, Joe-Henry cheering each of them on, gripping his ticket, watching as they found the next foothold, the next place to put a hand. We waited probably an hour and a half. It was the end of William's shift, he was off in ten minutes. But he enlisted the help of another guide, and the two of them got Joe-Henry suited up. The other guide said, "Hey, dude! I heard about you! You're the six year old with size 6 feet! Awesome!" Then into the harness and away they went. Before he got suited up, I gave him two pieces of advice. Don't giggle because it takes away your strength. And don't listen to or look for mom and dad. William is the go-to guy, listen to him, keep your eyes up on the next step and you'll be reaching the top. Joe-Henry listened intently, and repeated my advice to William. William said, "Oh, it's okay to giggle! Climbing is fun! And Mom and Dad can help, if they want to". So I took that as my permission slip to yell out a piece of advice now and again, but I truly trusted William to get him there.

And he did. It was amazing, thrilling to watch. Joe-Henry was so into it. Not too serious, but really, he worked so hard. I honestly didn't expect him to make it to the top, but if he got up 5 feet, I would have been ecstatic. But you know what? After about 20 minutes of really hard work, concentration, and cheers from the crowd that gathered below, my boy, my silly, giggly wiggly boy, rang that bell! I told him he had to yell out "Top o' the world, MA!", and he obliged. Then he got to rapel down, and I told him to thank William for all his help, and William, all good grace and humanity, said "tell your parents that you did all the work!" We all had a good laugh, and for the next few hours, Joe-Henry just kept repeating, " I DID it! I rang the bell! I didn't give up!" I told him he was so busted if he ever wanted me to believe that he couldn't get himself dressed in the morning, because I saw how hard he'd tried, and if he could climb that wall, he could surely get his own socks on. And he laughed.

I don't think it will be a problem ever again. Because he knows. He didn't give up. He rang the bell.

tmi & an angel named Doris

I learned too late in my life that T.M.I. stands for "too much information", and as you now know, in my world there apparently is no such thing.

Honestly though, since our meltdown, life has been seriously lovely. There were the bubbles, of course, and working in our garden, digging in the rich earth and marvelling at the brilliance of everylivingthing out my window. I'm actually really looking forward to this week with spring break. We've been snuggling a lot, reading books and talking about everything from the upcoming wedding to math problems to Joe-Henry's Halloween Costume. He's going to be Dwight Shrute.

We also got him fitted for a custom compression stocking. I can't tell you how frustrating it's been since our move to try to find ANYONE who is willing to learn about Joe-Henry's syndrome. His pediatrician is very hand's off, but mostly I think it's just the way his office works and not necessarily him. Everything seems to take longer than it should, and be more complicated and people have just been kind of, well, not helpful. But I finally found the fount of knowledge for all things vascular and lymphatic, and it was in a little dress shop that specializes in mastectomy wear and compression garments. I found them through another local kt mom. I've never met her, but we've exchanged lots of emails. She directed me to this store, where we were met by Doris. Doris is now, officially, our angel.

She's probably in her 60's, she's very tan with dark curly hair, and she has a very exact speech pattern. On the phone I pictured her to be completely humorless and librarian like, and I couldn't have been more wrong. She was a riot, a great listener (Joe-Henry had LOTS of stories to tell - more on that in a moment), and an absolute expert in all things compression: lymph flow, vascularity, types of materials, different styles of stockings, etc. She had more information and more compassion than anyone else I've met here. And if all goes as planned, Joe-Henry will have his bright orange compression stocking in about 10 days.

Anyway, she had Joe-Henry take off his pants so she could measure him, and he immediately said he had to go to the bathroom. So I told him we should probably put his pants back on so we wouldn't shock the ladies, and he said, "Yeah, I don't want to be like Daddy that one time when he forgot his robe, running naked through the house grabbing his penis yelling 'Nudiedaddynudiedaddynudiedaddy'!"

Um. No. Probably not.

I guess the whole "oversharing" thing runs in the family.

Costco madness and shopping for shoes from Good Will

I just got back from Costco, and I was in a pissy mood because a) Costco makes me bat-shit crazy with the slow people who park their carts right at the beginning of the aisle so they can sample the tasty morsels or hold bookclub discussions over "The Secret" in the book section. Here's a "secret" for ya - get your head out of your ass and move your cart because you're blocking this aisle, b) we were parked right next to a car that had bumper stickers that said "Marriage = One Man and One Woman" as well as "Protect Teen Girls" (clearly SOMEONE isn't getting any and doesn't want anyone else to have any fun either), and c) I'm a perimenopausal woman with pms. Not that you could tell or anything. So I thought to combat all this negativity I was feeling I could write about a really wonderful, nice thing that happened the other day when Joe-Henry and I were shoe shopping.

I've mentioned before that Joe-Henry was born with a pretty rare syndrome called Klippel-Trenaunay. We are fall-on-our-knees grateful that his particular involvement is so far, very minor. But one of the slightly annoying things about it (and believe me, I'll take annoying over painful and life-threatening anyday) is that it's really hard to find shoes that fit. But aside from a few thoughtless shoe salespeople, most everyone who has helped us has gone out of their way to find something to fit Joe-Henry's sweet, meaty feet. There was Jack at Harry Harris Shoes for kids in LA. Jack reminded me of the character William H. Macy played in Door to Door. Jack had kind of a lateral lisp, bad eyesight, and the sunniest disposition on the planet. He would always, always find shoes that Joe-Henry was proud to wear, and would even call us when they got a new shipment. Plus they gave out balloons that lasted longer than the shoes. Jack almost cried when I told him we were moving to another state. He and Joe-Henry were buddies, and I think that finding the right fit for Joe-Henry might have been right up there with the best part of his job. There was the lovely woman at Nordstroms, who gave us a call when they got in a shipment of extra wides. And now there is my new sweetie Will at the Pioneer Place New Balance store. Will is young enough to be my son, I don't even know if he needs to shave yet, but he is just about the oldest soul around. He's helped us twice now, and he always finds something that fits well, and more importantly than that, he always makes Joe-Henry feel great.

Kindness. Goodness. Writing about it almost makes me feel more forgiving for the slow-boaters at Costco. But not the bumper-sticker people. They're had still better stay out of my way.

another Chance encounter

Joe-Henry, future President of the United States, got off the bus today, looking at his shoes. I could tell that something was wrong the minute I saw his face. As soon as the bus pulled away, he gave me a hug and said "Mom, Chance was mean to me on the bus again. He kept repeating what I was saying, and was teasing me about my big finger." This story has a happy ending, but I have to do a little venting here.

As I've written before, my son was born with a rare disorder called Klippel-Trenaunay Syndrome. His case is fairly mild, and we consider ourselves incredibly blessed and lucky. If all we have to deal with is a few stares and rude comments, well, so be it. But still. When someone teases your kid about anything, it's very hard to keep any mama lion from roaring.

This is the second time this little boy has teased Joe-Henry, and it marks the first time that any child has teased him about his k-t. Kids have asked questions, and some have stared and whispered to their moms, but no child has ever been outright cruel. I want to meet this little boy. In a dark alley. All I could think to say to Joe-Henry was "It sounds like Chance doesn't hear any kind words at home. He doesn't seem to have anything nice to say at all. Just ignore him - he's not worth your time." What I didn't say was "This kid is an inbred peckerhead little shit meany meanpants." But it was on the tip of my tongue.

As I said, this story has a happy ending. After I told Joe-Henry to ignore him, he said, "I did Mom. And you know what? Desmond told him to knock it off. He said I was just born that way, and he needs to be quiet or he'll tell a grown up." If you've been reading this blog, you know that I've been a little worried about Joe-Henry missing his LA friends, and not really finding any pals here yet. But there he was. A friend on the bus.

Chance doesn't get any more space here, because I heart Desmond.

intimate

I am coming to realize that I will never have a more intimate relationship than the one I have with my son. I have an incredibly, increasingly intimate relationship with my husband, and for that I am thankful, but the intimacy I have with my son is so.... I am trying to come up with the word, and the only thing that comes close is this - sacred. But goofy also springs to mind.

I don't say this to be creepy, because there is nothing untoward going on. It's not only about body parts, which as a mother, you see more than your share of. It has to do with the honor of caring for these small people. For being a witness to the way they tick.

There is some of it that I am ready to pass up, to hand over to my son, things he should take on himself and be responsible for. (Wiping after a big poo comes to mind, and trust me, he does this himself now, but not before asking me to do a check for stray... too much information? Yes, I know. For me too.)

The incident that made me think about this is something that happened yesterday. My son's syndrome is very rare, but we are blessed that it has, so far, been quite mild. But it does show itself to the world, and he has no control over that. He has become an incredibly compassionate person, and if he has issues with it, he is dealing with it in a very positive way. He tells me every night at bathtime that he loves his "bumps", and he will affectionately pat them, and once in a while I'll catch him talking to them. He doesn't want them to go away, even though they are eye catching (meaning people stare openly). He has two large, beautiful fingers on his right hand, two large feet that remind me of a hobbit, and a very large birthmark on his left leg that runs from his hip to down past his knee, picking up again in a heart shape around the three outermost toes on his left foot. He has varicose veins on his left leg, and the birthmark, which is actually a vascular abnormality, will occasionally bleed. And that's what happened yesterday.

He had a panicked look when he got off the bus, and he was limping slightly. "Mom, I have a bleeder!" Normally, they'll bleed for a second, but not much longer, but yesterday, by the time we got up the hill, a bright red flower about the diameter of a tennis ball had blossomed on the leg of his pale blue jeans. We ran inside, took off his pants, his sock, which had also become soaked, and managed to stop the bleeding and put on a bandaid. It wasn't really that much blood, but it was more than usual. I don't worry too much now, but I know we'll have to get him into compression stockings sooner than later, and that the bleeding issue could become embarrassing if it happens at school. But why? That's what I was thinking about this morning, when I wanted to post. Why is our blood so intimate? I don't know. But it is. I also know that if it happens at school, it could scare people. Not just children, but the adults who don't happen to know about his syndrome (although everyone he comes in contact with at school has been given a letter of explanation.)

I guess that's what is hard for me. That my incredibly talented boy, my funny, smart, gentle, kid might be judged for something he has no control over. It happens to everyone, I know, and I know that we can't control what others think of us, and I know that my desire to shelter him from the harsh, or even sympathetic thoughts of others is something every parent feels at one time or another. There are times when we all have no choice but to share some private moment with the world. But still, the desire to do so is so strong. If I could will people's eyes up and away from his leg, to his sweet, silly face, and to his beautiful heart, I would. They'll get there eventually on their own anyway, it can't be helped. The kid is a force of nature. But that first moment will always be there. So, I'll just put this out there...

it's all intimate. Every interaction you have today should be honored. You, too, are a witness. And it's all sacred.

the incredible hulkmama

Do you remember the first time you were teased? I don't remember the words that were flung, but I do remember that I was in kindergarten and this first grade boy in kicked me in the shins, hard, and it gave me a huge bruise. The thing I remember most, though, was my mom's anger at this boy. My mom had a quick Irish temper, and I remember feeling that this boy was in Big Trouble with my mama. She said, and I quote (this part I remember very clearly) - "I wonder how he would like it if I put on my army boots and gave him a kick in HIS shins?!" I truly thought she would do it, too. She never did put on those boots, but I'm pretty sure she did talk to someone at school. I know she wouldn't, and couldn't have let it go. A couple years later, though, my same mother held my much older brothers back physically when they heard me yelling for help in the alley because I was being kissed against my will by Darren Teichmer. She knew I needed to learn to fight that fight myself. I think, too, that she had learned that righteous mama anger was all well and good, but children needed to learn to defend themselves, as hard as that sounds.

I bring this all up because yesterday after school, as we were walking up the hill from the bus stop, Joe-Henry stopped in his tracks and said "Mom! Chance teased me on the bus! He asked me if I slept with my mom, and I said I did, and he said 'You sleep with your mama, you sleep with your mama!' like that, teasing but not nice teasing. And he wouldn't stop, even when I told him to!" Nothing really prepares you for the feeling you get when your kid is picked on. I imagine it's something akin to Dr. Bruce Banner turning into the Incredible Hulk. I've had to deal with these feelings before, to a different degree, when people, mostly adult people who should know better, would look or make comments about Joe-Henry's feet or his birthmark. He was born with a rare syndrome and his feet are larger than other kids his age, and he has a large vascular birthmark on his leg, as well as two big fingers. But in those cases, even though you just can't BELIEVE how stupid and rude people are, the comments are without malice, so while I might strain against my necktie a bit, I always manage to stay in my mild mannered Dr. Banner guise. In this instance though, a little boy was actually being outright mean to my son. I put on my game face, but I felt myself flush a mighty shade of Hulk green, and I had to force myself to not say "What a little shi&t!" Instead, I managed to stay my own pleasant, but somewhat darker shade of MamaPink. I asked "What did you do?" He said, "I just ignored him. But if Mike (the bus driver) says I have to sit by him tomorrow, I'm going to ask if I can move." The first thing out of my mouth was that maybe his mommy didn't snuggle him, so he felt the need to be mean. Not the best thing I could have said, I know, but it just came out. But I also told him that I was proud of him for using his words so well, and that I had confidence that he could work out a good solution. I AM proud of him - he is exceptionally verbal and confident, and I know he can say what he needs to say to work it out.

But if he can't, and this kid can't stop teasing, I WILL turn green, and my boots are going ON.

fear

Last night as I was snuggling my son during our nightly ritual (I will lay next to him and we'll read books or talk, and I'll stay til he's asleep - I know a lot of people disagree with this, and if you're one of them, say what you will, I'm still going to do it), we were discussing the movie "Shrek". He had just received it for is birthday, and even though we'd seen it before, we watched it last night because a) there was no school today, and b) we'd missed the time for the movie showing in town. We were laughing about Donkey and he was saying that when Shrek and Fiona kissed he felt shy but happy. Then he said "I want to marry you when I grow up, Mom. Even though you'll be really old." I laughed, and told him that he'd most likely marry a girl his age, and when I said this, he started to cry.

These were not just quiet tears, but huge, gulping sobs that I was unprepared for. I asked him why he was crying, and he said, in that choking, gagging way you have when you're completely at the mercy of a huge emotion, he said "I don't want you to die, Mom! Don't ever leave, don't ever die". I quieted him, and soothed him and held him, and told him that hopefully we wouldn't have to worry about that for a really long time. I told him this: "Sweetie, the odds are that I'll live a really long time, and so will you, and we won't have to worry about this big feeling for a while." And after a ten minute digression to cover what "odds" meant (try it - it's hard), I admitted that I too, was afraid. I said, "I'm always afraid of losing you. I'm always afraid that something bad might happen, even though I know it probably won't. But it's just that I love you so much..." I trailed off. But that's the thing. It could happen. My son was born with a rare syndrome, called klippel-trenaunay syndrome, and it involves vascular malformations, as well as larger limbs and abnormal lymph flow. We've been lucky, and blessed that his involvement thus far is minor. But honestly, even without that upping our "odds", I would probably still live with that fear. Like any other parent that opens the newspaper or watches the news (I've limited myself - I don't watch the news anymore) and reads of some awful tragedy that's happened to another parent, I close my eyes and send them my heart, and feel horrible that I'm thankful that it wasn't us. This time.

Part of this too, stems from losing my own mother at a really early age. I was eight, and I don't know if I've processed it properly even yet. I remember distinctly her telling me she had to have an operation. We were washing windows on our french doors - I was doing the bottom half, and she was doing the top. I remember telling her I didn't want her to die, and she said "Oh, honey. I'm not going to die". And then, she did. Not from the operation, just from being sick in a small town, and not having adequate medical care. I think. That's what they tell me. I was eight, and my older siblings all have a different take on it. In a way, I guess I'm the lucky one, because her death, to me, is just loss. It's not colored by anything I can remember, like how she fought with my dad, or that I knew she was unhappy, or that the doctor was stubborn. For me it's just a childhood without my mother. I miss her, but I don't remember life with her that much. But I know life without her - It shaped everything. I got away with a lot, I never believed in my own goodness until years later, and now her loss informs who I am as a mother. It reinforces my need to tell the uncomfortable truth.

So I told him what I know from my own experience. Bad stuff happens all the time. I probably won't die for a long time, but I can't say that for certain, as much as I'd like to. We just have to focus all our energies in the love we share now. Store them away for later. I pray I'll be around to bug the crap out of him when he's a teenager. And I pray that he'll grow tall and strong, and bug the crap out of me, too.