Monthly Archives: October 2016

The luxury of conviction

We’ve examined all the evidence, talked to multiple doctors, and made the decision for Lucia to have a minor, preventive procedure next week.  But given that nearly every one of Lucia’s surgeries, despite its long-term success, has resulted in substantial consequences and complications, no decision ever seems so minor, no surgery decision ever completely or clearly obvious or secure.

When I was a kid, I used to think that being adult meant that when you made decisions you made them because you knew what to do–because you could distinguish between right and wrong, good and bad in the way one prunes the dead branches from an otherwise life-filled tree or discards bruised and rotting fruit.

But now I know how fully such conviction is an often sought after but fairly elusive luxury. Perhaps it’s that way for every parent but the stakes seem so much higher where you’re tracking in an autoimmune deficiency, aspiration risks, and surgeries.

But I think I find this so hard because I’m an 8 (on the enneagram).  I make decisions swiftly, like it’s my job.  In fact, it’s a job people often, with great, hearty, thankful sighs, outsource to me.  I’m proud of my forthright and decisive nature, because it contributes to my vision.  I can often see very clearly the path forward when others are still hemming and hawing over the myriad of options.

But I do not enjoy one bit playing God with my daughter’s comfort, life, future, and pain.

I really wish there was someone to outsource all of that to.

But then I’d be someone else’s parent and she’d be someone else’s child.  And she’s my conviction, all twenty-three pounds of her is what motivates every excruciating decision and prayer and hope and risk.

Because when it comes down to it, complacency and inaction and passivity are all luxuries as well.  As Mary Oliver so starkly put it, “Tell me, what is it you plan to do with your one wild and precious life?”

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Snuggling with Lucia on a fall day.  My photo.

At my bravest and perhaps most decisive, I realize that Lucia is already living this life, and we are merely striving to find the conviction to live it just as fully with her.   So we strive to outsource the burden of those decisions to God so the weight of them, whatever they may be and whatever may come, feels just a bit lighter.  We decide to live each day with conviction, because perhaps it’s not so scarce after all or just reserved for big decisions.  Perhaps conviction lies in embracing the everyday moments that compel us to see just how blessed we are to live this life with Lucia and one another.

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A house that talks

I went away for my birthday last weekend and returned to find the walls of our house, previously bare, covered with photos and artifacts from our travels and pictures of that lovely girl has become the source of so much inspiration on this blog and to her parents.  My husband and his parents had to work around the real plaster walls to adorn the place but it surely feels more like a home now that it did before I left.

A few months ago I wrote about how I’ve struggled with this big purchase, this acquisition if you will, but how the house has already brought us so much joy, and perhaps God means it that way.  And you’ll have to humor me for writing yet another post about the house.  But it continues to feel like an adventure, this getting to know the house, and its old ways.

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Lucia enjoying being outside in front of our house.  All photos mine.

For one thing, the house creaks and moans and groans and talks.  It’s kind of like another character in our lives; it does its own thing.  And it seems like people forgive that personality of old houses so much more easily than new.  A crack or a cranny or an angle or a blemish is just how she or he was made, rather than something necessarily to be fixed.  You work within the house’s constraints with more measure, because it has existed long before you and will continue to live on (hopefully) long after you’re gone.

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Lucia on a walk in the cemetery.

A few people have asked me whether it’s haunted and I’ve replied heartily, gee, I hope so!  Across the street a cemetery that initially spooked one of Lucia’s nurses (she’s from China and has a hearty respect for ghosts) has become a favorite walking place for all of us.  It’s the view we linger upon from our windows, that and a little church that’s no longer in service.  All these features can be kind of painful reminders of the lives lived within these walls and around this little town that cease to be.  But they can also remind us of our smallness.  Our small, small part in the grandness of God’s works throughout the ages.

You see, when we were looking at houses, we kind of fell in love and bought this house because of the way the sun set and the golden light glittered on the field out behind it.  Sure, we cared about the inside of the house, its spacious kitchen, and its accessibility for Lucia, but it was not as much about just who the house was but what the house held out before us that made us buy it.  Perhaps this is why old houses are so much more than the sum of their parts–they have storied pasts and thus, hold out before them artful futures, and we continue to feel blessed to live in the in-between space, where history is relished and dreams are conjured.

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Lucia and her dad on the porch.

We’re learning to live with the clunks in the night, but it’s so funny, whereas in our previous apartment we used to go all frenetic when the smoke alarm went off and might wake Lucia, in this house, we let the sounds live.  I think we imagine she enjoys and leans into the creaks and the clunks as much as we do.  They’re a sort of comforting reminder that the house has its own truth to be spoken in a world that can be so careless with the histories, stories, and lives of things that mattered to someone and will matter in the future.

So on a rainy morning like this one, I listen to the rain fall on the rooftop, place my feet on the boards that have been here for hundreds of years, and relish the little creaks that let me know that my weight upon it means something to this sturdy, storied house.  And I wonder how our lives lived will be added to its landscape, our little imprint figured into its much longer, illustrious, creaky history.

Who could have imagined?

Yesterday a woman who works at Barnes & Noble walked right up to Lucia and greeted her–she knew her but she didn’t know me.  One of Lucia’s favorite nurses, determined that she wouldn’t become isolated with our recent move to the country, regularly takes her on outings to book stores, walking trails, parks, and libraries, and this woman had read books with my child many times!

One day when I was working from home and a friend stopped by the house, Lucia was out on one of these excursions unbeknownst to me.  The friend was a little disappointed.

Lucia has her own social life, I chuckled.  Who would have imagined?  I thought.

Indeed, I think it’s easy given Lucia’s diagnosis, physical, and cognitive challenges to presume that she lives a limited life, but this is so far from the truth.  Precisely because we’ve been forced to rely on nurses, doctors, and therapists to help us care for our medically complicated child, Lucia’s social network has certainly widened beyond the typical two and a half year old.

At the outpatient facility where Lucia does her therapy she’s not usually interested in toys, but she always cranes her neck to see the other children running and jumping and shouting.  This morning Lucia’s nurse, having just returned from China, brought her a Chinese children’s book and Lucia cocked her head to listen as the two of us yammered on in Mandarin about her trip.  Several months ago, one of her nurses put her hair in Jamaican braids!

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Lucia taking a nap on the D& R Canal in NJ.  My photo.

I think about the incredible richness of the life Lucia leads and I am in awe.  Our minds, our predictions, our perceptions of life with disability often fail to see beyond the presumed downside of dependence, medical necessity, and constant care.  But Lucia’s needs have, in such a good way, forced us all to expand our very limited social circles and our very limited notions of what life with disabilities entails.

A month or so ago when I spoke on the phone with a parent advocate about Lucia’s impending transition out of the state’s early intervention program and into school, she compassionately yet inaccurately projected another presumption onto me:  “Oh I’m sure your heart is just breaking at the thought of her going to school all day, on that big bus.  I’m sure it is so hard to see her go.”

Perhaps it would be hard to see Lucia get on that bus if she hadn’t already been living her life so fully.  But knowing how much Lucia enjoys all of these people, adventures, and diversity in her life, my husband and I are decidedly eager and excited for her to start school.  Perhaps another thing all these doctors visits, nurses, and therapists have prepared us for is trusting others with our kid, knowing it’s so important to share her rather than shelter her from the world.

When I look in awe upon Lucia’s full life, I cannot fathom the wisdom of God.  This is precisely the life I would want for my child, and yet, who could have imagined this life in particular?  Who could have imagined this village that God has provided, this little social butterfly despite her lack of words and gestures?  Who could have imagined that it would take the world and its limitless possibilities to help us see how Lucia has expanded all of our lives?  Who could imagine that a life with disabilities could be so rich and nuanced and bold and grand?

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Every time I look at this photo of Lucia I can’t help but smile. (My photo.)

Well, God, of course.  

And thank God for that!