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."

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.

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.

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.