On Tuesday, the babies and I woke up far too early and headed out to Sick Kids Hospital for Madeleine’s usual three-month checkup with her neurosurgeon.  He’s seen her four times now since February, and thankfully, we haven’t yet had any issues to worry about as far as her shunt function goes.  He asked a few questions about Madeleine’s motor development and about potential issues, like having a preference for one side of her body over the other.  No, I told him, no problems yet that we can see.

I was hesitant to ask the question I really wanted to ask, the only question that really matters.  “Do we know anything for sure yet?  Do we know if she’s going to be okay?”

He answered in that way that doctors do sometimes, when they don’t want to commit to something they can’t guarantee.  “It’s too early to say,” he said.  “But I will say that given the severity of her bleed, I certainly didn’t expect her to be doing this well.”

It was just what I was hoping for, what we had been dreaming of all of these months.  But at the same time, there was still something nagging at me, still a whirl of anxiety making it’s way through my chest.  Of course I’m grateful to hear that Madeleine is doing better than expected – of course!  But even though we’ve been watching her blow us all always this whole time, even though we had a feeling that she was doing better than she could have been, even though every little new thing she does is a big step in the right direction, I had been trying very hard to not consider the outcome I’ve always really been hoping for – that maybe nothing will be wrong with her.  I’m hesitant and slightly ashamed to even write those words, to let them slip out of the secret place in the back of my mind I’ve reserved for the best case scenario.  Best to prepare myself, I figured.  Best not to get my hopes up in case something still goes wrong.  Best to take it a day at a time and not get ahead of myself.

I’m ahead of myself.  I can’t help it.  Each time Madeleine impresses her doctors, the part of me that dreams of my girl running and playing and having chatty, articulate conversations gets a little more excited.  The part of me that hopes that she’ll grow up and we’ll look back and say, “you had hydrocephalus, and look at you know!”.  The part of me that hopes that one day we will be the people telling the scared, new preemie mom that their daughter had a grade III intraventricular hemorrhage and you’d never even know it.  And each time nothing goes wrong, that hope gets a little bit stronger.

Of course, I know that if that doesn’t happen, if she has developmental impairments that are mild or moderate or crazy severe, if she ends up not being able to walk without help or talk or write or if she needs special help at school, if she has trouble seeing or hearing or whatever it is, it will be more than fine.  She has already shown us that she is perfect and incredible.  I know that even the progress we have made so far is an achievement, that many babies like Madeleine haven’t done so well, that we should be counting our blessings for what we have.  I know that no matter what, our lives won’t really change that much at all, and motherhood will still by far be the best thing that will ever happen to me, the most incredible, life-changing gift I’ve ever been given.  I know that health issues and disabilities do not at all change the heart of who a child is.  That they will not change who Madeleine is.

But then there is the part of me who dreams of Madeleine’s future and wants her to have only the best, most incredible, easy, beautiful life.  The part of me who doesn’t always count her blessings.  The part of me that hopes that we’ll beat the odds despite everything we’ve been through.  That part just might end up pretty disappointed.



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