Friday, June 1, 2012

In Which We Figure Out What's Going On With Connor And I Get Kind of Sentimental

I found a barred owl feather outside my window today.

I hadn't seen our owl for a few months, and I thought he might have moved on to other woods or perhaps hadn't made it through the winter.  So I'd gradually stopped looking for him.  It made me so glad to see that he was still there, even if I haven't seen him for a while.  I brought the feather in and ran it through Connor's fingers, which made him break out in that wonderful squeaky laugh of his.  It's the first time we've heard that laugh in a few days.

It was after we'd brought Connor home from the local emergency room.  We'd taken him there after he had a five and a half minute seizure-- his sixth seizure of the day-- and we had to use his Diastat.  I called the doctor's office to give them an update on how things were going, and they told me to go ahead and just take him in rather than waiting until he'd had a fever for 72 hours, like our original instructions.

It didn't take the ER doctor very long to figure out what was going on; I knew the second Connor started struggling when they tried to put the otoscope in his left ear.  Connor is the most easygoing, laid-back kid in the world when it comes to doctors poking and prodding him, so if he's pitching a fit there's a reason.  Turns out that he's got a raging ear infection, which not only explains the fever and the seizures but probably also explains all the teeth grinding he's been doing recently.    So they gave him a shot of antibiotics and sent us home with a prescription and instructions to keep him on the Tylenol and Ibuprofen regime another 24 hours until the medication has a chance to do its work.  We also have instructions from his doctor to take him immediately to her clinic any time in the future he has a fever over 100 degrees and they'll fit us in so they can check him over and hopefully prevent another situation like this.

Sometimes I wonder what it would be like to have a kid who, if he got an ear infection, would just tell me their ear hurt instead of  landing in the ER after having thirty-five seizures over a three day period.  A kid where we had yearly doctor's visits to just one doctor and the occasional trip for some minor childhood illness, instead of sometimes two or three trips a month to ten different doctors scattered across four different hospitals in three cities.  A kid for whom walking and talking would come as easily as breathing, and who would bring home report cards with letter grades instead of giant complicated packets with goals that haven't changed for two years because they haven't been met.

What would it be like to worry about if my child is growing up well instead of whether or not he'll grow up? 

When I was pregnant with Connor and we first found out that he would have so many, many challenges, in my secret heart I wondered if it wouldn't be easier for all of us if he didn't make it-- if he slipped away before we ever met him.  Because while I had no idea what to expect the future years would bring, I knew things were going to be hard.  And I knew that my dream-- my naive, arrogant expectation-- of having a brilliant, athletically gifted child who would attend an ivy league school, inhale books, speak at least three languages and excel at anything they put their mind to was utterly shattered.

And it is hard.  It's so much harder than I ever could have imagined.  But that doesn't mean it isn't the best thing that's ever happened to me. 

If I could take away his pain, the difficulty Connor will have moving in the world among people who sometimes misunderstand or pity him, I would do that.  If I could give him more time, I would do that too.  Who wouldn't?  But otherwise I wouldn't change him, or my life, despite how hard things get sometimes.  I think that raising Connor, watching how he sees the world and realizing that every moment I have with him is a gift, has melted away so much of that arrogance and entitlement I felt before I knew him.  I'm still a flawed, imperfect person and always will be, but I think being Connor's mom has forged me into a much better version of that person than I would have been if I'd never met him.

My child may not ever head to college or run a marathon, but he's gifted nonetheless.  He possesses the ability, without ever speaking a word aloud or walking a single step, to touch people deeply on a primal level and bring out the best in them.  He brings a richness and a clarity to every moment I spend with him.  He's introduced me to a level of love so fierce it takes my breath away.  And he's stripped the superficial veneer away from my dreams and purified them so I've realized that even though I don't have the child I expected, I have the child I really needed all along. 

Sometimes the things you think you've lost are still right there, waiting for you to find them.

I love you, little guy.

~Jess

7 comments:

Katy said...

This post. . . you sum up so many things with an ease that I envy. Connor is blessed and so are you.

WanderingJack said...

I read you column daily, but never comment and for that I apologize> you are a beautiful strong mother and wife who has been given so many challenges and you just keep climbing to the top in a way I just admire. I love the honesty in this post and hope you continue to write about what its honestly like to be the parent of a child with special needs. Other parents struggling need to know that they are not alone, and that these kind of feelings don't mean they are a bad person or a bad parent. Thank you.

slamburger patty said...

Gita, you're an amazing mother. You are fortunate to have each other. Stay strong. <3 Slammy

Ellen said...

I have read your blog almost daily for a LONG time without commenting, which I apologize for as well, but I wanted to let you know that this was beautiful. You are a wonderful writer. Glad the little guy is feeling better!

Clara said...

Wow, you have a gift to find the words to describe how children like Connor do make you a better person, but still I know it can be heartbreaking to let all the Ivy League and toddlers and tiaras expectations go away. I really don't know what's easier or harder when in our secret worlds we wonder, and wonder some more. I really get heartbroken sometimes, but sharing this stories is so important because they turn pity into respect and appreciation. What's not to love about your little guy though? I've never met you Jess but I just wish so bad that I could just give you a hug! Now!

Anonymous said...

Beautiful thoughts from a beautiful person. We love you, Connor and Jeremy so much.

Julia said...

Words fail me (although they never seem to fail you). Beautiful.

 
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