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."

Courageous

This week has been an emotional rollercoaster. On Tuesday I took the boy to the doctor because he was having a lot of pain in his left leg. I had taken him in the week before due to a sinus condition and cough, but now I'm worried that somehow it's all tied together.

Mind you, I'm operating on less sleep than I'm used to having - I have been waking with JH in the middle of the night, helping him through bouts of coughing, administering medicine, reading poetry aloud to help ease him back to sleep, and then laying there wide awake trying to untie the worry knot in my brain.

Monday afternoon I got a note from his teacher saying that he was getting a leadership award, and that's when he also mentioned that his left leg was hurting. So Tuesday, after I managed to get out of work for an hour for the awards assembly, I brought him home, went back to work, and took him to the doctor when I got off work. They did an ultrasound on his leg, did blood tests, which he was very, very brave about. He was SO scared to have the blood test. His eyes welled up when they told him, and he was embarrassed. When the ultrasound tech had finished (after an hour and half, due to the fact that he has more than the normal amount of veins in his leg (something he thought was pretty cool!), she left the room to find the radiologist. The whole building was quiet - it was after hours by then - Joe-Henry told me he was ashamed that he cried and wasn't brave.

I told him that courage had nothing to do with tears. The bravest, strongest people cry. Tears are cleansing, healing things, and that there is nothing shameful about them. Putting on a brave face doesn't mean not feeling things. It means facing things through tears sometimes.

I had to leave work early today to pick him up at school again. His leg is hurting, a bit higher today, which scares me. We see the doctor at 1:30 and the ultrasound tech at 3:00.

I am doing my best to keep MY brave face on. To be his support and to keep my emotions in check. But if the tears flow, I'll try to remember the words I spoke to the bravest kid I know.

Verklempt

Who would have guessed, ten years ago when I had a bebeh in mah belleh, that I would be a proud, benchsittin' loudyellin' baseball mom?! So much of this parenting journey has been a surprise. The dreams you have for your children before they are born are YOUR dreams. But when THEIR dreams come into sight, and they can work toward what THEIR passion is, there is not one thing in life like it.

Oh sure, you can guide them toward things, model behavior you want to see from them, expose them to things you think will make them the kind of people the world needs. But when they hit a certain age, and you need to start loosening your grip, finger by finger, if you're lucky you get to see who THEY are. It's a nailbiter at times, you watch them interact on the playground when they're little and wonder just how the hell they are going to get through this unscathed.

Watching Joe-Henry run when he was little, watching him chase his friends from far afield, trying with all his might to catch up, hearing him recount the gym classes when he came in "last, again", those are moments I have been bracing myself for since his birth. Knowing they were coming did nothing to stop the lump in my throat. It just helped me to hide it from him a little bit.

We've been pretty honest with him about his kt. There is so much we DON'T know. We've been good about not making false promises, or giving false hope, but we haven't ever said "you can't do this".

And he hasn't either.

Yesterday after the last game of spring baseball, when all the parents had packed up the kids and the trophies and JH and his Dad were headed to the car, his coach took me aside. I had thanked him for all his dedication to the kids, to helping them really learn, really try their best. He didn't sugarcoat anything for the kids, he got on them, with humor, when they messed up, and the kids all responded with their best efforts. The last game was a hoot, and the kids all made some pretty impressive plays. Anyway, he wanted to know about Joe-Henry's leg. He had heard me ask if it was tired earlier. I told him a bit about Joe-Henry's kt, that it was vascular, and his leg tired easily, and he had a hard time running and standing sometimes, and he just looked at me and took it all in. He said "Joe-Henry is one of the best players I had on this team. He has so much heart and desire, he always gets in front of the ball, he always know where it's supposed to go. I wish I had ten of him. Heart, desire and intelligence can go a long way towards making dreams come true.

I'll never forget those words.

Tough Kid

The Many Faces of Joe-Henry
Originally uploaded by anniemcq

Joe-Henry has always been a bit of an old soul. He'll spout poetry at the drop of a hat. Not poetry he's learned (although he loves to read poetry), but stuff just comes out of his mouth that makes his Dad and I drop our jaws and rush to write it down. He used to do that with his music, too. He'd make up songs on the guitar with lyrics that went deep, deep, deep (and not just deep "for a kid"), but lately he refuses to pick up an instrument. Except the piano. I force him to practice. But I don't make him pick it up, because that would just be cruel.

Yesterday, we had a few errands to run. First stop was The Barber, because a) I needed a second opinion to find out if he just had crazy bad dandruff, or a fantastic colony of headlice, and b) he needed a cut anyway. On the way there, he BEGGED me for a mohawk. "PLEASE, Mom! I want to look tough! Your rules are stupid!" I told him to chillax, because until we found out if his head were home to the largest infestation of bugs since the dawn of time, his hair was going to stay longish. Luckily, the barber we had gave us the good news that he had cradle cap, and just needed some oil on his scalp, so a hair cut followed. He decided that throwing a big tantrum in front of all the hot ladies at The Barbers (this place deserves an entire post of it's own) was a bad idea, so he said nothing about a mohawk, and instead came out looking like the Joe-Henry I know and love. I realize that the time will come when I have no say about whether or not he gets a mohawk, or dyes his hair, or pierces and gauges every loose flap of flesh on his body, but until then.... Many parents will say that they let their kids do whatever they want to their hair, that it's a battle not worth fighting. I may change my mind at some point, but I don't think he's ready yet for the awesome responsibility of a shitty haircut.

Later, we were at Fred Meyer, buying a few groceries and I was looking around for some pants for him because he's growing so fast his ankles are sticking out of his jeans so far that they could technically be capris. But while we were looking, he spotted some t-shirts with graffiti on them that came with, gulp, skateboards. Not full size skateboards, but big enough to do some damage. He begged, he pleaded, he threw a full size fit: "MOM! I WANT THAT! WHY WON'T YOU LET ME? YOUR RULES - AAAAAGH! I WANT TO BE A TOUGH KID!! TOUGH KIDS HAVE MOHAWKS AND RIDE SKATEBOARDS!" It was one of those tantrums that you realize that no matter what you say, it just needs to run it's course. The time to talk about how special he is? And how throwing a fit is the perfect way to lose privileges? That time is later. Now is the time to ignore him and let him exhaust himself. Which is great for two reasons: 1) it's the right thing to do, and 2) I could pretend he's someone else's kid. I stayed in the area, just to make sure no one would make off with him, because doesn't everyone want an ranting, flailing eight year old? A moment later, he brought the t-shirt with the skateboard to our cart. He had managed to get it down, although I'm not sure how - the display was almost too tall for me to reach. He threw it dramatically in the cart, and I calmly took it out and put it back. He had just about exhausted himself at this point, and he started to cry. In part, because in getting the t-shirt down, the skateboard had bonked him pretty hard on the head, but mostly because he wanted some control over his life.

Two things I've learned from yesterday: Never, ever take him to do errands without feeding him first. Big mistake. The second thing is much harder and more complex. My boy is really struggling with who he is. So much of his syndrome is benign. He is so much better off than others who have it. He's able to walk, he's mostly pain-free. But his feet are really large, he's self-conscious about his birthmark and his fingers, he can't run as fast as other kids in the class, although he tries so, so hard. More than being bothered by his syndrome, though is the fact that he's just incredibly smart and sort of beyond the other kids in his class. I don't say this as a competitive, doting mom. I don't. It's just a fact. He's a really deep well of complexity and he's beyond most of the kids in his class in that regard. And while I know that's a great thing, he can't see it that way. He just wants to be a tough, running, cussing kid who laughs in the face of danger. Or at least at Mom's rules.

I get it, because I wanted to be that way too. For most of my life, I wanted to be someone else. Someone sexier, smarter, taller, faster. Don't we all? But with age comes some kind of acceptance, and at this point in my life I really like who I am. The only thing I'd change is this:

I'd like to be better at helping my kid see what I see in him. Last night at bedtime, he apologized for throwing a tantrum, and when he was going to sleep, as we were talking and our heads were close on the pillow, he said this: "Mom, your sweet face is the home for all my kisses."

Tell me how to make him see the treasure in his good, sweet, brave heart.

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.

I Got Nothin'

I've been trying to come up with a post for a while, but we're still recovering from the crap. He's been to school this week, and seemed to be getting better, having one brief episode of diarrhea (which is one of my very least favorite words to spell), but still the occasional, brief tummy ache. But last night, he woke up in the middle of the night with explosive diarrhea, the last bout being very bloody. It was another long night for he and I, and Charley stayed home with him and took him to the Doctor (who said "he seems fine") and sent us home with a kit to collect a stool sample for the lab. The funny part is he DOES seem fine, although thinner, and he isn't having diarrhea anymore (well, of course not because it's not the middle of the night), and he's just chipper as all get out. He and Dad built Star Wars Legos today, and he and I had a little nap when I came home from work, and well, life, it just goes on.

But I can't shake the worry and it's just mine. No one else seems upset or worried, and honestly I don't want them to be. I just feel like I need to be isolated and I'll come out when things get better.

I'm frustrated and angry and tired. I'm entering the irrational worry place that comes with his syndrome. I know it's probably fine, and the blood was most likely irritation (although there was enough that it was pretty alarming), but I just wanted the doctor to say, "you know what, let me run some tests" to make sure it's not some nasty bacteria. I WANT it to be just bacterial. I don't want to think about what else it could be, but there it is, and it's all I can think about.

So that's what's in my head. I'm sorry.

On a positive note, I've been getting a lot of great reading done at night. Middlesex, by Geoffrey Eugenides. It's a fantastic read.

Klippel-Trenaunay Syndrome

As some of you know, Joe-Henry was born with a rare syndrome called Klippel-Trenaunay Syndrome. It's causes are unknown, and there is no cure. We are incredibly fortunate in that his case is relatively mild, and while he has bouts with cellulitis from time to time, he is very healthy and on the go.

We have not needed much in the way of "treatment" for JH. Just some compression stockings so far (that he hates wearing and for the most part refuses). In the next year or so, it is my hope that we can have him followed more closely, because with adolescence there is a lot of growth, with growth there can be complications. But as long as he's mostly symptom free, we don't want to do much. It is usually something he has to explain from time to time, which he is brief and confident about: "I was born with it." It certainly doesn't define him, but it has had a big effect on the person he is. He is one of the more compassionate kids I know, and he is maybe the last one to notice if someone is "different" from him. He is confident and strong and funny and talented. He used to play guitar and mandolin and has informed us that he wants to focus on the piano and drums right now, but he might pick up the guitar again when he's a teenager. Or maybe ten. He loves school and riding his scooter and swimming and math. He reads 198 words per minute and can appreciate other's strengths and his laugh will get you through a bad mood in a hurry.

Oh, and he has something called K-T.

This link was emailed to me from someone on the K-T listserve. Children's Hospital in Boston is one of the few places that has done research and treated many K-T patients (the other being the Mayo Clinic in Rochester, MN). It's really informative, so if you're interested, read on....