The Debate: Bubble Wrap, or Freedom?

Yesterday, I took Lee to Long Beach to visit his Pediatric Neurologist.  It was a routine visit--something we have to do every few months so that she can keep a watchful eye on him, and hear of any changes in his seizure activity.

Getting there is always a challenge.  In California, we measure driving distance by minutes or hours, rather than miles.  Case in point:  If I told you that his doctor was exactly 37.66 miles away, it would mean absolutely nothing.  It took us 45 minutes to get there, but an hour-and-a-half to get home.  Southern California.  Gotta love our traffic.

Lee's doctor is a petite woman in her mid-to-late 40s, but with biceps like Madonna, and a bod pretty much like hers too, actually.  She has her hair tastefully bleached blond, it's short and straightened with a spiky flip thing happening on the ends.  I bet she's a vegetarian.  She's super-duper thin, and she has the facial bone structure of someone who eats a lot of fat-free fare.

If she was warm and friendly, I'm sure I'd be a lot less catty.  Instead, she comes off kind of...I don't know, aloof?  Bored?  Maybe constipated?  Doubtful, if she's a vegetarian.

You know, though, I don't hire a doctor for their personality, right?  No, actually that isn't true.  I've hired many doctors for their personalities.  But this one, I grabbed because I needed someone who could give Lee the best care he could get.  And she was the one my insurance told me I had to take him to.

She really has done a pretty good job.  She has educated me, and she has actually gotten a little bit warmer and more real with me over the course of 6 months that I have been taking Lee to see her.  Yesterday she entered the room with a student, and our conversation really seemed more friend-like than doctor-to-patient like, which...OK!  It's what I've always wanted from the first place.  And it was awesome!  As I'd answer a question, or tell about what Lee's latest seizures have looked like over the summer, I'd switch eye contact from the doctor to the student, receiving in turn attentive eyes, complete with the friendly squints of a smile, or a wide eye of amazement (I must have been captivating), and it really, really started to get friendly.  I was loving it.

So, we're talking, and it came to that time when I start in on my own list of questions I had for my girlfriend son's doctor.  One of the questions had to do with his Chiari Malformation.

First of all, this is a total aside, I've been noticing that Chiari is pronounced, "key-ARE-ee," by this doctor.  And it was pronounced this way by a hospital doctor.  I've always pronounced it, "chee-ARE-ee."  Who knew?

Anyway, with Lee's Chiari, the part of his brain that protrudes down into the back of his neck leaves him rather vulnerable to brain injury if his activity isn't limited.  This means that he can't participate in anything that involves a g-force with sudden starts of stops (roller coasters), or contact sports (tackle football).

I'm the kind of mom who, I admit, could easily wrap him in bubble wrap or act pretty much just like Henry Fussy's mom in Charlotte's Web.  I can rock the Over Protective pretty well, and to me, this seems just like the time to engage all systems.  But then there's the other me...

The other me who mourns the fact that this little guy is only 6, and he wants to do what 6 year-olds do.  He's a kid who, without any imagination whatsoever, I could see getting recruited by his high school football coach, just because of his size alone.  He's a kid who right now, would love nothing more than to ride a bike, or jump on a trampoline.

I need direction.  I need answers.  I need someone else more qualified than my emotions, to decide what my baby can and can not do.  So I made my list, and I was giving Lee's doctor my heart-felt concerns, complete with my range of emotions on this issue.  It was here, that I was talking to other moms.  Women who were clearly "getting," me.  Women who had what I needed.  Answers.  So, what do I do? Do I fill his free time with music lessons and dress him in plaid, or do I just let him go, and be a boy?

She opened her mouth with the answer, her eyes moist with tears, and as I waited with attentive eyes, and two very open ears, I cleared my brain of all the thoughts of wondering how many times a week she works out, and I listened as her answer filled the room, and floated to my ears.

She breathed out a deeply sympathetic, "Yeah," and then she continued with, "yeah, this is what you need to know."  And I got that scrunched-up face thing, with a tender head-nod that we women do with each other when we're feeling each other's pain, but yet don't have a dang thing to say to help.

Huh?

And in a nano-second, I snapped out of girlfriend-mode, slapped on a teensy bit of bitchy, and I said with a smile and a chuckle, "Right!  And this is why I'm asking YOU!"

Awkward laughter between doctor, student, and mother.  We all glanced over at Lee, who was playing with his action figures on the patient table, and still smiling, we sighed.  This is another thing we women do...we always look at the kids play when we feel awkward, and don't know what to say.  And we usually sigh.  In unison.  Why?

"His Chiari isn't that bad--it's only a Stage 1," she said.  "He'd probably be fine on a trampoline, so long as he doesn't do any flips, or fall off."  Then she added, "but no football."

Then, of all things, she went and reminded me about an adolescent patient she had who also had a Chiari, went to an amusement park, and after all of the jolts and jerks, ended up with lasting neurological deficits.  Nice.  She's told me about him before, and I haven't slept well since.

So.  Here we are.  Ambiguity at its best.  Or worst.  Do I deprive Lee of things that may never pose a threat, or do I protect him from things that could hurt him?  Oh.  And this neurologist isn't our first opinion.  She's our third.  We have one who said his brain is perfectly protected within the bony structure of the spinal column, one doctor who said his sky is falling, and now this one who is just as wishy-washy as me.

Yeah, so now I open the debate up to all of you.  What should I do?

I really look forward to wisdom.  Answers.  Or links to cool neck braces I can buy for him.  Anything!  this is so hard.

One thing's for sure.  The doctor didn't exactly help me on this one.  She did, however, make a change in his seizure medication dosage, because of recent seizures.  She's been spot-on with the seizure part of his challenges.  It's just the Chiari part she's a little vague on.

There was something else she did, which can not go unmentioned.  She made me like her.  Spiky hair, killer guns, and all.

Maybe I should ask her if I could be her workout buddy?  Nah.  I'd hate the commute.