Thursday, April 17, 2014

Hosanna and Hallelujah



Nico keeps accidentally calling it Black Friday, and though we've explained the difference between Black Friday and Good Friday, I can't help but agree with him a little bit.  It must have seemed black that day.  I doubt that any who attended the "festivities" on the original Good Friday would have called that day good.  To us, now, the outcome is good, but that doesn't erase the fact that it would have been a terrible day to live through. 

That's how it is when you're living in the story, not knowing what is waiting on the next page, not being able to see the end of the chapter, much less make out the words on the last page.  That's how it is being human, with our infuriating tunnel vision and our complete inability to see the future, with our desperate attempts to look at things with perspective despite being mostly glued down to the surface of a planet and into lives that tend to completely fill our vision.

For me, Good Friday has felt like a dark day since we got our Very Bad News on Good Friday two years ago.  Funny how quickly a day that should be about so much more than my own sadness can get co-opted into something entirely about me and what I want.  I don't mean to imply that my grief and my remembrance don't have a place in my personal story, just that if I could somehow see past them, past the closeness of this hurt and out into the promise underwriting the day on which my heart was broken, then perhaps I would in some way be lifted from the merciless gravity that can grind us deeper and deeper into the proverbial dirt of this life.

When I was younger, the church we attended put on a big Easter pageant every year.  The actor who played Jesus grew his hair out long and, shirtless and painted with blood, he carried a big wooden cross up the center aisle of the church.  It was silly theatrics, really, and I was always a little embarrassed for him.  Until the part where they nailed him to the cross, when the lights when out and all the music stopped and big men in Roman soldier costumes hammered loudly at the giant nails.  Though it was all so clearly fake, though I knew the man playing Jesus would be standing on a little platform and just holding on to the "nails" when they hoisted the cross up into its base and hit him with a single white spotlight, I still got a chill every time the lights went out and the sound of hammering echoed through the sanctuary.

Our little family is light on the liturgical traditions that mark this season for many people.  We don't get painted with ashes.  We don't give up things for Lent and are thus not salivating to eat or drink or have that thing we've sacrificed for 40 days. We don't get to watch an overdone Easter pageant like the ones I was in growing up.  Heck, I didn't even know hot cross buns were an Easter thing until Pioneer Woman made them.

The ramifications of the Easter holiday are talked about year round in our house, the sacrifice and the forgiveness and the hope that come from that day, but truth be told our traditions this time of year have more to do with fluffy bunnies and creme filled eggs than sacred rituals of faith.  In fact, I seem to forget how important a day Easter is for me until it arrives every year.  After I've dressed everyone in their pre-approved Easter outfits (complementary colors but not matchy-matchy because of course that's better for the pictures), after we've cleaned up the trail of plastic grass that has spilled out of baskets from little fingers completing the "did I get everything?" search down to the bottom, after we've eaten too much for breakfast and scrambled to load into the car and squeezed into our seats at church, after all that, a quiet finally comes over me.  And I understand, again as if for the first time.

I spend too many hours of every day struggling against the fact this place is broken.  I try to understand why people hurt each other, why catastrophes happen, why I am made to want things that are not good for me, even when I know they aren't good for me.  I watch Good Friday approach and think to myself, "Oh not again, I hate this day," forgetting that I can't see the end of the chapter any more than the people who lived through the original Good Friday could, forgetting that I can't really get perspective on what my loss means, or if it even means anything at all beyond being a symptom of living here in the dirt.  I hate that we are a world derailed, an often angry and dangerous and altogether floundering place.  I see the darkness in this life, and sometimes it can fill my vision.

But, on Easter, I can almost see past it.  I stand and sing songs that explain why that Friday was good, though it seemed anything but, and inside me a quiet space opens up, a little glimpse of glories promised.  I can almost hear the pounding of the hammer on those fake nails lodged in that prop wooden cross from years ago, and I get a chill thinking about the real thing.  For a moment, all the theological debates and all the culture wars and all the tunnel vision fall away, and I am reminded why I believe, why I still cling so hard to a sometimes shaky faith.  For a while, for just a little while, I get a look through the dust of this place and into things eternal, and a quiet kind of light takes up residence in me. 

Together we sing words like Hosanna and Hallelujah, and they come out without irony, a faithful chorus, perhaps all seeing past ourselves in unison.  And I come home to eat a big ham dinner, talking to my kids about what we learned, trying to explain supernatural concepts in words that don't fall flat, thinking of how eternity took root in me for a while and hoping it will for them, too, someday.  I come home buoyed and lit up and clear-headed, praying that glow doesn't go out before I can get the potatoes out of the oven, holding on to heaven even as I slip my Sunday shoes off and bury my toes in the grass, feeling the warm spring dirt under my feet.  Still tied to the earth, but somehow not as firmly, still singing Hosanna and Hallelujah under my breath.


Image Credit, used under Creative Commons License

Friday, April 11, 2014

Between the Words

Someone taught him to Eskimo kiss and now, though he can't pronounce the name of what he wants to do, he will pull our faces close, shaking his nose back and forth, trusting that we can understand the movement.  Lincoln is six, rushing through his kindergarten year, yet still making as many unrecognizable sounds as identifiable words.  For so many things, he can communicate well with a combination of the words he does know, a few fragments of sign language, a range of facial expressions, and a slew of animated gestures.  What he can't say, he shows, and most people who spend time with Lincoln would be quick to say you pretty much always know what Linc wants.

For years, I have bemoaned Lincoln's delayed ability to speak.  I have imagined his head full of ideas that he can't share.  I have kept this internal list, though I would have denied doing so if you'd asked, of all the things he can't communicate, ideas more delicate and complex than "Linc wants Batman," or "more milk please."  I have bristled against the waiting, impatient at the gradual progress, always anxious for the day when we would get to hear Lincoln wax poetic about whatever will eventually make Lincoln wax poetic.

Perhaps this is all heightened at the moment because I am acutely aware of the how slow the days seem lately. The winter hung on for so long this year that it began to feel like time had not passed at all, and we were all still stuck in the bleakness of January.  My slow expansion seems almost unnoticeable, until one day we are all struck by the sudden roundness of me.  I cannot help but feel, in the long in between moments, that I am stuck in the endless limbo of waiting, waiting, waiting for something that will not come any faster, no matter how much I will it to be so.

And while I wait for this baby (ever so impatiently), I forget how every day that brings me closer to meeting her takes me one more day away from when the other two were babies themselves.  Their slow expansion seems unnoticeable, too, until one day their pants have shrunk two inches and they come home having learned, somewhere from someone, how to give Eskimo kisses.

We are, all of us, just learning how to communicate these changes.  There is so much that remains unsaid, perhaps remains unspeakable.  When I cluck at the new holes in the knees of Nico's jeans, pulling down at the hems and willing his winter clothes to last through to shorts and t-shirt weather, he simply cannot hear the subtext that is so clear in my head.  It is a cry of look at you grow! and you're so tall! mixed with why must you always grow away from me? and how am I ever going to let you go?  It's a bittersweet experience, a joy and ache in one, and I know it so keenly without being able to explain it to him.  Because how can I tell him that I want to see him do everything, watch him in every stage of his life and know who and what he will become, and that I still want to hold him down and squeeze him tight and refuse to let him grow one more centimeter? How can I say there is part of me that wants every day to go back to the day he was born and hold him for the first time, that I will never love him more than that moment and also that every day I love him more than the day before?

And how can he tell me he wants me to leave him alone and let him make his own decisions, but also that he wants me to hold him and comfort and protect him forever?  That he wants to be big, and he wants to be small, and the ache for both is too confusing to put into words?

So we say it by pantomime, by pushing each other away and pulling each other close, trusting each other to know just what it is we need, though we can't enunciate the impulse.  Even Nico, our you-can't-believe-how-many-words-I-can-get-out-in-a-minute talker of child, even he says as much without words as he says with that expanding vocabulary of his.  And I try to read it with the braille of touch, probing at the truths that don't come out easily with fingers that brush at the hair on his forehead and settle on the defiant tension in his eight year old shoulders.  All the words he doesn't know he needs to say can be read sometimes in the dispensation of those shoulders.

We try to teach our children to name everything: name their colors, letters, numbers, and all the animals at first, then to name their feelings and their fears and their hopes.  It's funny that we forget to mention how much they will never be able to say with words, even people like Nico and like me for whom words come easily.  It's funny we pretend there are hurts than can be healed with anything other than touch, that we ignore how loud a silence can be, that we offer them language as a tool as if it fits all locks, when we all know it doesn't.

I think one of things that has surprised me most about parenthood is how tactile an endeavor it is.  I never imagined how much could be said through the work of my hands, that cooling a fevered brow or kissing a scraped knee would speak more than all the soft words of comfort ever would.  I never realized that I wouldn't ever feel really home until I had touched each of my loves, that coming in the door and calling hello and setting down my keys were all just things I would need to do to be ready for the real homecoming of their embrace.  I don't know who taught Lincoln to give Eskimo kisses, but I know it speaks to me a rich and complicated web of emotions that are probably better left unsaid anyway.  And one day, his speech will have taken off so much that we may not even remember the long wait for his words, but even then, so much of what we say will be done in pantomime.  Some things just can't be said; they must be shown.  So we might as well become fluent in that language now, taking a cue from Linc and pulling each other close to say everything that comes between the words.



Friday, March 21, 2014

The Things We Can't Say

The light was on in Lincoln's room as I got ready to leave the house this morning.  I could hear him happily talking to himself, babbling really, and I knew I would find him sitting in the little chair at his low play table, holding a Batman figurine in one hand and Green Lantern in the other.  When I opened the door, sure enough, there he was at his table, in his dragon pajamas with his action figures clutched tight in his hands.  His cry of "Mom!" was cut short by his detection of the ultimate precious in my arms.  It came out kind of like, "Maaah...iPad!"

The early morning sighting of his dear family is easily trumped by the early morning sighting of the beloved iPad, that wondrous screen of games, cartoons, and lest we forget, the gleeful magic that is Talking Ginger.

Linc followed me downstairs (okay, to be honest, he followed the iPad downstairs) and began his negotiations.  I told him, "I have to leave, buddy, give me a kiss."  And he responded, "No. Want iPad."

"Nice try," I said, "You're not getting the iPad.  Why don't you give me a hug and a kiss before I leave?"

"How 'bout... show?" he suggested, pointing to the television.

I held firm.  "How about a kiss?"

We both won.  He wrapped his arms around my leg, and I planted a few kisses on his forehead.  And as I left for work, the soundtrack of "Jake and the Neverland Pirates" was already blaring in the background.

---


Six years into the adventure of raising a child with Down syndrome, I have been all over the map with how much to share and how much to hold close.  I would love to think that things are getting better for people like my son.  With the rise of autism diagnoses, with the tide turning against using the word retard casually, with more and more stories making their way into social media about people with special needs thriving and suceeding, it seems like maybe, just maybe we are making progress.

But then I read an inspirational article about a person with Down syndrome and, before I catch myself, my eyes stray down to the comments.  And I read the most horrible, hateful, things.  Things I can't get out of my head for weeks after.  Or, I visit my favorite pregnancy board and read how many mothers, women who are also pregnant and love to talk about their ultrasounds and their nursery plans and their commitment to breastfeeding, I read these same women unapologetically announcing that they would not hesitate to terminate their pregnancy over a diagnosis of Down syndrome.

I read these kinds of things, and I realize the progress is slow, so slow sometimes I wonder if we are going backwards.

---

For six years, we have been the parents of a child with Down syndrome, and sometimes it can be easy to feel like we have to be the poster children for team Down syndrome, always smiling, always reminding everyone how much we love our son and how much he has enriched our life.  Today is World Down Syndrome Day, and it can be easy for me to feel like I'm supposed to write something inspirational about our son, post a badge on Facebook, and wear a plastic bracelet that says 3-21 so people will ask me the significance of the number and give me a chance to wax poetic about the incredible experience of knowing something with Down syndrome.

And the thing is, I do like to wax poetic about raising Lincoln, and I do believe he has enriched our lives in ways that a typical child just wouldn't have done.  But that's also not the whole story.  Because part of the experience of raising a child with Down syndrome (and, I imagine, a child with any other special needs) is trying to walk the balancing act of being team Down syndrome and also being brave enough to talk about the large and complex issues that come along with this experience.  Sometimes we look around us and come to the conclusion that the world can't handle the nuance of doing something hard and discouraging and confusing that is also amazing and inspiring and worth all the blood, sweat, and tears you pour into it.

Sometimes we're not sure we are allowed to both advocate for our son's right to live and be treated equally and allowed to say that raising him can sometimes be daunting, exhausting and lonely.  Because we see how people like our son are talked about and treated in the world, there are things we don't feel like we can say, sometimes not even to ourselves.

We know that he can be extra work in a class setting, so when we pick up our son from school or from church and hear that he's developed another challenging behavior, we just apologize and promise to work on it at home.  We don't say that we've already been working on it for months, that we have exhausted every strategy we've come up with and the vast majority of the articles and child-rearing books other parents use for advice are written for typical children.  We don't say that we have no idea what to try next.  We just smile and apologize that he was a disruption and promise to work on it at home.

We don't say how much we ask ourselves where his delays end and our deficits in parenting begin, but you can bet we tend to blame more of it on our deficits than the other way around because no one wants to admit their child is struggling, is unable to master something, even when you know it's to be expected.  We worry that his constant vocalizations are disruptive to other people.  Of course we work on being quiet in places where talking is not appropriate.  But what we don't say is that we have listened to his vocalizations ourselves non-stop for almost six years, that we get frustrated with the noise, too, and frankly if we knew how to get him to stop making those sounds, we would have done it already.

We are tired, but we worry about asking people to watch him.  We worry that he will not behave, that he will not be able to express what he wants and will get frustrated, that he will decide it's time to wrestle with your children or that he will rub snot on your couch or that he will simply sneak out your front door and wander into the street.  We know he's more work to babysit than a typical 6 year old.  We know some people may feel uncomfortable around a child who is different, even if they know and love us and wish they didn't feel that way.

We also know that, statistically, some people we know will have terminated a child with special needs. We know that others, though they didn't have to make that choice, would have been in the termination camp if they were faced with the decision. We know some people around us every day will be of the opinion that it was cruel of us to bring our son into the world, will think maybe he shouldn't be here in the first place, and may treat him badly because of that feeling.

---

Today is World Down Syndrome Day, and I've been thinking about what that means for us and what it would look like to advocate for Lincoln without feeling that we need to be plastic or scripted.  What would it mean to celebrate his life, to be team Down syndrome all the way and be open about the joy of raising a child with Down syndrome, while also being free to admit that sometimes this is hard?

See, I don't think the message needs to be that raising a child with a little something special is always going be sunshine and rainbows.  Sometimes we feel like pulling our hair out, and we cry, and we wonder if we are doing enough.  And other days, it's sunshine and rainbows for miles.  And butterflies.  And Batman (because he's the best, don't you know?).  And iPads, and negotiating a ten second hug that will make your whole morning.

I think maybe the message needs to be that this experience is hard, but that doesn't mean we wouldn't do it again if we were given the chance. And why shouldn't it be both? Why can't it be hard and exhuasting, with a less clear roadmap and a slower, rougher pace; and also at the same time be worthwhile and miraculous and fulfilling?  Why can't it be terrifying and brave, while also being comfortable and reassuring?  Why can't it be the best thing and the hardest thing you've ever done?  Why should we feel we have to live by only one narrative?  Why can't it be the right thing to do and the right thing for your life?

And if you think about it, that's a lot to celebrate: being part of a great, joyful, difficult, trying, deeply moving and motivating thing.  Oh, happy day.


Thursday, March 6, 2014

To Our Child, Whoever You Are

To our unborn child, whoever you are:

It feels strange to be doing this, writing a letter to the thing jumping around like popcorn popping in my belly, but you have hijacked my thoughts today. Tomorrow we will get to see you again, thanks to the fuzzy black and white magic of ultrasound, and as the hours tick closer and closer to that moment, I cannot think of much but you.

The first time we saw you, you were little more than a tiny seed whose heartbeat was so faint it could barely be picked up by the ultrasound machine.  The next time, you waved your tiny little arm at us.  And the last time we saw you, you were doing upside down aerobics, an honest-to-goodness bouncing off the ceiling type aerobic routine.

Tomorrow we'll see you again, and this time we will look at the chambers of your heart and watch the blood flow into your little organs.  Right now both my heart and yours beat within my body, and though my heart aches to know that yours is strong and healthy, right now you are as much a mystery to me, as much out of the reach of my hands, as I am to you.  Tomorrow we will take a look at that heart, at your finger and toes, at all the pieces of how you are put together. 

I have spent so many days afraid that these glimpses will be all we ever see of you. Every time we've  seen you, I've cried out of relief and joy that you were still alive and moving and growing.  Still with me, still with us.  On many of the long, anxious days since I learned you were growing inside me, I have simply prayed, "Let this child live.  Lord, let me meet this child."

You hear people say, "I don't care what we're having as long as it's healthy."  But that's more than just something you say when you've experienced loss.  It's more than just something you say when you've had a surprise diagnosis at your child's birth, when you've spent long hours on the inside of the NICU and met pediatric specialists and watched the monitors, willing your child's stats to go up.  The hope is not entirely gone after that, but yes, much of the innocence is sucked out of the process once you've been to the other side of "as long as it's healthy."

Tonight I pray hard for the best, wondering if we will get to meet you and who you will be if we do. Soon the doctor will measure your limbs and map the arc of your spine and look into the chambers of your heart.  And I pray, I do, that you pass every one of their tests with flying colors.

But, if you don't, if we find ourselves one more time on the wrong side of "as long as it's healthy," then let me tell you, little one, you are in the right place.  We will walk with you in that path, or we will carry you as the case may be; we will hold you in love or in grief and we will love you for who you are, whatever and whoever that is.  If you don't pass their tests, we will hold each other and cry, and then we will stand together for you, whatever you need, whatever may come. 

I'm not done praying for the best outcome for you, and I suppose I never will be.  But I'm trying to remember, trying to learn and relearn, that I am not the author of your outcome, or of mine, and the one who is has us both wrapped up in a plan that maybe neither of us will ever understand.  I'm trying to remember that even though I don't know the plan, I trust the one who wrote it.  And I believe He gave us to each other for a reason.

So, you dance like popcorn in my belly, and I'll try to get some sleep tonight.  And tomorrow, I'll see you again and know one more small slice of our story, the chapter that began with you and will end wherever it ends, though neither of us can see it from here.

Love,
Mom

*Update: Everything went well, baby looks very healthy, and it's a girl! 





Thursday, February 13, 2014

The Way of Sorrow

You know how, when you talk to someone every day, you never seem to run out of things to say?  The daily minutiae is not too small, and even the discussion of a new brand of coffee creamer does not feel like wasted air between you. But as the frequency of your interaction fades, as you find yourself wondering "when was the last time I spoke to so-and-so," it gets harder to know where to pick up.  There's more to say, really, but somehow it feels like there are fewer words on your tongue.  Where does one even start to fill in everything that has been missed between you?

So it is, I have learned, with the page and me.  The more I write, the more I have to write.  And the less I write, the less I can think of to say.

You would think, after launching this blog at a time of grief over a lost pregnancy, after talking about the often unspoken aftermath of miscarriage and the slow return to feeling like some semblance of myself; you would think after leading with that massive dark cloud, I would run back here to talk about being pregnant again.  You would think I'd have plenty to say.  You'd thing it would feel like picking up a conversation right where it left off.

But instead I have gone quiet, and the words that were once my comfort feel foreign to me now.  In truth, I have been holding my breath, waiting for another round of sorrow to find me, fearing the worst and terrified to give words, give life, to that caustic venom of fear.

I sit here caught between the miracle and the messiness of it, alternating between thinking how there's a tiny thing inside me sucking the energy right out of me and thinking there's a tiny person inside me who can now hear my voice, can now smile and frown, can now perceive light even though eyelids that won't open for two more months.  I sit here feeling the first stirs of movement, the faintest signs of life bumping almost imperceptibly around inside my abdomen.  I sit here all by myself and not alone at all, two hearts beating away as I sit in my office chair and use my lunch break to look for the words I've lost.

And I sit here listening to the Wailin' Jennys sing about coming "By Way of Sorrow" over and over again.  I wonder if this maudlin and yet strangely hopeful lullaby will be the first this baby hears me sing:
"You have come by way of sorrow,
You have come by way of tears,
But you'll find your destiny
Meant to find you all these years."
I sit here thinking how grief gets into everything, like one drop of red food coloring that colors everything, turning everything pink no matter how much you water it down or thin it out with joy and peace and laughter.  There is no way to remove the mark of grief on our lives.  But that's only part of the story because there is also no way to remove the buoyancy of hope, even when I try to tamp it down, even when I beg the hope to stay packed away because I cannot bear the letdown if I get carried away, pulled up in its ascent and then dropped back to the earth again.

From the moment I got my drugstore prophecy, two pink lines and a racing heart, I have begged to keep my feet on the ground.  I have tried so desperately to stay tethered down here where the fear and the grief live, down on the hard earth, because it's so much easier to live here than to fly up and off in a whirl of excitement only to bruise my tailbone on my way back down.  It would be so much easier not to get my hopes up, but up is just kind of what hope does.

And though I have not had the words for it yet, not perhaps until today, I dream with aching arms of holding this child.  I will its existence with prayers more fervent than I have ever spoken.  I look at pictures of nurseries and read reviews of baby products online, painting an elaborate picture of how this child will be welcomed home: dressed and cradled, laid to rest, nursed, bathed, rocked, carried.  All the ways it will be loved.

So I will sing about coming by way of sorrow, and I will marvel that this baby might be hearing the tune.  I will sing about the fear and the sadness, but I will also sing about the hope, and I will remember that neither one is the final story.  I have come by way of both just as, Lord willing, this child will come by way of both.  Born of pain to our tears of joy, the first step in a cycle that will always include both, as long as we are in this world.  And as I sing, I will hold out the last verse, the verse that I pray is a forecast for us and for this child:
"All the nights that joy has slept
Will awake to days of laughter.
Gone the tears that you have wept,
You'll dance in freedom ever after."


Photo Credit, used under Creative Commons License