Friday, July 18, 2014

Any Day Now

I was just about done setting up for one heck of a pity party.  The table was set and the balloons were blown up, and one of those world's smallest violins was just about to play some maudlin tune.  At first I didn't even see it coming, but as the evening wore on last night, my mood was growing darker and darker.  I had half a dozen things on my to do list for the evening, but instead I was sitting in the living room, listening to my children play video games and letting the weight of my worries rest on me like ten thousand pounds of borrowed trouble.

There's a funny thing that happens at the end of pregnancy.  You get to the point where the doctor tells you that if you go into labor, they won't try to stop it, and from that moment a realization creeps in that any day could be the day.  I find myself looking at things around the house -- at the little messes and the things I've been meaning to fix for how long now and the random piles of hard to organize stuff that never seem to get put away -- and thinking I need to fix that right now, right this very second, because if I go into labor today, those piles will still be there, junking up the counter when baby comes home.

I've got eleven days left until this baby is scheduled to arrive, and I alternate my free time between frantically doing the last little things that feel like they must get done, adding to my lists of things I don't want to forget to get done, and collapsing on the couch in exhaustion.  At work, I have a post-it note with the list of things I need to remember to take care of if I go into labor suddenly: set the out of office email, grab the laptop, don't forget to grab my purse and the only umbrella we seem to own these days.

At night, I wake uncomfortable from sleeping on my side, lumber to the bathroom, and then lay awake in the dark waiting to feel the baby kick because I can't remember exactly the last time I felt her move.  And just when I start to panic, she gives me a hard kick and decides to keep me up another hour with a series of aerobic jabs.  So, I lay there and think of all the things that need to be done or discussed or decided in the next eleven days.  We still haven't called the pediatrician's office to make sure he's taking new patients.  I think we need some hats in the newborn size, but goodness knows if babies even need hats in the heat of a Texas July.  And we haven't decided on a middle name yet.  Why can't we just commit on that already?

People tell me that it's getting so close or they can't believe I'm still working.  They ask if we are so excited and if we have everything ready.  I know they mean well, and so I don't have the heart to say that eleven days feels just as far away as eight months felt at the beginning because I don't think I'll be able to believe that this baby is really going to show up until I am holding her in my arms.  And I don't know how to say that we are equal parts excited and terrified at just how excited we are because we can't stop thinking what if something goes wrong again.  Or how to say that we have all the necessary items to bring a baby home, but I still can't stop cleaning and organizing and doing everything I can drum up to keep myself busy and pretend we are actually bringing a newborn home in a few weeks.

Even though we have eleven days left, I know it could happen any day now, and sometimes that sends me into a panic.  Because the way my brain computes that is: any day now, we could have another surprise.  Another loss, another heartache, another scary diagnosis, another stay in the NICU, another meteorite that might slam into us and throw us so far off trajectory that we aren't sure how we will ever get back. That could happen any day now, and no matter how much I clean or work or organize, I don't know how to get ready for that.

So last night, by the time I tucked the boys in their beds for the night, I was all ready to throw one grand ole pity party.  The sky was working up a rumbling mid-summer thunderstorm, and I was lying in bed watching old episodes of Law and Order, counting all the things that could still go wrong with this pregnancy.  I was thinking how, when I try to imagine what this baby will look like, I can only see a fuzzy place, like a blurred out, not-suitable-for-TV image that keeps me terrified nothing will ever show up to fill in that fuzzy, unsure place.

But also, I couldn't help thinking of something my mother said on the phone earlier in the evening.  She said, "Be excited.  I have peace about this."

I turned off the show to wait for sleep, but the lightning was bathing the room in intermittent strobes and this baby had just started her nocturnal aerobics.  I thought about what my mom had said, that command to be excited already, and about a message a friend had sent earlier in the day to check on me.  I thought about how all the people who know and love us understand how hard it is for us to be excited about this, and yet they still want that for us.  Not because we are supposed to be excited, but because they don't want us to miss out on all the joy of anticipating what's to come.

Laying there, I thought about how it all could happen any day now.  I could go into labor at any moment, and just like that I would be done with my last ever pregnancy.  Any day now this little girl could arrive, and when she does, she's not going to know or care what I've been through to get her here.  She's just going to know she needs her mother, the one whose smell she will recognize from birth.  She's going to know my voice and that she's hungry, though she will understand only basely, instinctively how to remedy that.  She's going to realize that the world is both quieter and sometimes louder than what she knows, that it's brighter and colder and less comforting, and she needs to be held close and loved and kept alive in ways she never before imagined she would need.

Any day now, I will need to be ready to take her into my arms and tell her, with some semblance of conviction, that it's all going to be okay.  That I know she's new and she's cold and she's scared, but she needn't worry about any of that because I will take care of her.  Because I am here, and she is so loved, and she will never understand how much we've been waiting for her, willing her into existence, listening for her heartbeat and feeling greedily for her kicks, desperate for any trace of her.

Eleven days from now, if not sooner, she will be here, and when she comes I had better be ready.  And I don't mean ready as in the baseboards have all been scrubbed clean and her clothes are all washed and organized by size.  I mean ready for her, to comfort her, to parent her, the only thing that matters and perhaps also the hardest part of all this waiting.

And just like that, as I was setting up that brilliant pity party, it all evaporated.  I realized that I can't ever be prepared for all the bad things that could happen.  And no matter how clean my house is, it won't make me ready for the only part that's really important.  But I can be ready for her, and so I will try to be, so achingly, hauntingly ready to see her and hold her and promise her it's all going to be okay.


Friday, May 16, 2014

Swallowing a Beach Ball, After Photos, and Mom Jeans

I will never be one of those pregnant women who looks like the same lanky version of her pre-pregnancy self who just happened to swallow a beach ball.  You can tell I'm pregnant from behind and above and below and pretty much any other angle you catch me at.  My hands swell and my feet swell, and I get cankles and a puffy face.  And you will probably never find me doing a photo shoot with nothing but a windblown sheet wrapped artfully around me.

In fact, I've always found the maternity photo shoot thing a little disconcerting.  Why are so many of them half naked?  Why are all of these women taking pictures of themselves in their underwear and then proudly displaying these pictures for God, grandma, and everyone else to see?

But my very smart husband has a point about those strange (to me) photo shoots. He says that for women who have spent their entire lives watching what they eat, obsessing about their stomachs, and finding their worth in their pant size, it must be incredibly freeing to step outside the popular beauty ideal and still feel, well, beautiful.  It must be a welcome change to smile over their own expansion, to look down and see a mound of stretched out skin and, rather than make that noise in the back of their throats that means they think they look fat and disgusting, reach out a hand to feel the roundness of it.  Hopeful and happy and proud.

He's right, though it pains me to say it.  I get that.  I feel that.

Maybe I don't always feel beautiful while I am pregnant, but at the very least I feel a suspension of the pressure to subscribe to the beauty standards of the day.  I love to watch my stomach grow, even though I never seem to get that perfectly beach ball roundness other women get.  I even love to be told I'm huge, though I understand that's not a welcome compliment to most pregnant ladies.

But even still, this window of being happily round is a small one.  For a few months, we can conditionally suspend the pressure of feeling like we are supposed to look a certain way, but it ends abruptly, certainly before our bodies have bounced back and often before our brains have even caught up with the process.  This reprieve is finite: there is a point at which it is acceptable to start looking pregnant (a moment that seems to fall right about the start of the second trimester, and heaven forbid your body dare to start before the allotted time) and there is a point at which we believe our bodies should suddenly stop looking pregnant (usually about 35 seconds after we push the baby out).

Because looking pregnant while you are pregnant is amazing and miraculous.  But looking pregnant when you're not pregnant is about the worst thing that can be said about you, or so it seems.  We have decided as a society that it's never appropriate to ask a woman if she is pregnant, so great is the perceived horror of being presumed pregnant when you are not.  That shape is only beautiful, apparently, when there is a baby in that beach ball.  Any other time, naturally, it's abhorrent. 

I have been just about every weight a girl can be, for a while at least: fat, thin, that somewhere in the middle where you feel fat but your friends tell you you're just thick or solid or curvy.  I have been up and down the scale looking for the weight that will finally make me feel like myself.  I have bought into all those after photos that seem to promise that when I finally get it all together, when I finally reign in the uncontrolled part of me that likes food more than I like myself, then I will have a glossy, perfect, kind of life.

But my experience was that I felt about the same about myself at every weight.   That is to say, I felt not quite enough no matter how much I had gained or lost, and though when the scale was going down I felt a certain sense of accomplishment, at no point did I ever feel like I had arrived at myself the way those after photos seemed to promise I would.  I think that for me, and for many women, there is no goal line for that drive, no point at which we have done enough to feel like we deserve to like the way we look at any given moment.

It was when I was at my thinnest that I realized my worth could never be read by the numbers on the scale.  It was when everyone was always congratulating me on how I looked but I was secretly sinking deeper and deeper into the early phases of an eating disorder that I began to realize that what was broken was not the type or amount of food I was putting into my body, but the fact that I had never felt like I had permission to like the body I had right then.  At any version of right then that my body had ever been.

We talk about things like beach bodies, as if only by displaying the proper amount of willpower can we earn the right to feel the sun beat down on us and the sand between our toes and the salt water kissing our perfect thighs. We talk about getting back into our pre-pregnancy jeans as if our bodies can just rewind to a previous incarnation, as if it's okay to want to be the way we were before this monumental change has happened to our lives.  As if we're not supposed to look and feel and be different because of the process.  We say we love being moms but wouldn't be caught dead wearing mom jeans.

After nearly three decades of being miserable because I didn't look the way I thought I should look, I decided to take a different approach.  I decided that instead of trying to make my body match an ideal I saw popularized by pretty much all forms of media, I would try to make my mind like the body I had.  As it was, in that moment.  And I decided that if my body changed, I would try to like that version, too.  

But in a way, going through pregnancy now is putting that new way of thinking to the test.  It's one thing to decide to like the way you look even as you step off the dieting roller coaster and give away the too small pants you were always sure you were going to fit in one day.  It's another, as I am learning, to look forward to embracing the messy postpartum body with acceptance and grace.  The only way I have ever faced a post-baby body is with the hearty chorus of "I can't wait to lose this weight" on repeat in my ears.  It was never a possibility to be okay with that in-between body that no longer housed a baby but still showed the stretch and strain of when it did.

It's amazing, though, how my perspective has shifted now that I am carrying a daughter.  I can't help but feel I have less time than I expected to figure this out because when she arrives, there are so many things I want to show her and teach her.  Starting with how to be brave and patient and kind, with how to be someone instead of just trying to look like someone.  And of course I want to show her, because she may not learn it anywhere else, how to love the body I have carefully carried and nurtured for nine months, the body I will feed with my own body for many more months, the body Sam and I will delight in as a miraculous creation, poring over the toes and the fingernails and the tiny little lines on the lips.  I want to show her how to love the body that eventually everyone will tell her should look a certain way but should really just look as it does, in all its own imperfect perfection.

My hope for her is the same as the hope I have for myself these days.  May she be full of life and love, may she laugh often, and may she be blessed with a body that allows her to dance and run and play.  And when she looks in the mirror, may she see more than the package that holds her all together.  May she be hopeful and happy and proud, whether she has swallowed a beach ball or even just looks like she did.

Image credit, used under Creative Commons license.

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.