Love is patient, love is kind.

This love thing. It's bigger than everything else. EVERYTHING.

I told Clay the other night that I fell in love with all three of my boys in different ways. Falling in love with Clay has been like wading into the ocean: with each step, I become more immersed, more aware of the vastness of this love that keeps getting deeper with every moment we share. Falling in love with Will was instantaneous. He was born and suddenly my heart was outside my body; he felt so much a part of me and has ever since. I love him so much that it's painful sometimes. But falling in love with Grant has really felt like FALLING--a process in which I am not in control. In many ways, I wasn't ready to meet him; his birthday and his diagnosis were such shocks to my system that love got buried underneath so many other emotions: fear, grief, anger, guilt. These past couple of weeks, I've been slowly peeling back these superficial layers, the ones that aren't a part of him at all, and the love is seeping out. This experience broke my heart wide open. But now its WIDENING and its OPENING. And there is a beautiful little guy lying next to me right now who has been patiently waiting for me to sift through all these other layers and find the love at the foundation.

I'm here, Mama. I'm all about love. Take your time, but know that on the other side of all this bitter is a whole lot of sweet. 

Bittersweet. My new favorite word. Starts with bitter but ends with sweet. Yes. 

I wasn't looking forward to Christmas this year. The joy just wasn't there for me. I had pictured this holiday being the most joyful of them all, us with our two boys, but everything has been different than I expected, and in the midst of it all, I didn't really even notice all the lights and cookies and parties. I was in a bit of a numb fog.

But then Clay, Grant, and I went to a 11:00 Christmas Eve service at our church. It was dark and cozy and packed with people, including two families that have really been there for us. And it was quiet. Silent night. Holy Night. The celebration of a birth that changes everything. I listened to the reading of Luke and noticed for the first time that Zacharias, Elizabeth, and Mary are all told "Do not be afraid." These people were scared about the future too. They had to trust that God has a plan, that God is with us, that we live to share the birth and nothing will be the same and that's a good thing. Perhaps there's a reason why scared and sacred are almost the same word.

And then a college student stood up with a banjo and gave me my first gift of Christmas:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone.
Snow had fallen, snow on snow, snow on snow,
In the bleak midwinter, long ago....

What can I give him, poor as I am?
If I were a shepherd, I would bring a lamb;
If I were a Wise Man, I would do my part;
yet what I can I give him: give my heart.

The entire church was captivated by his stunning arrangement; I was captivated by the grace of it all. Of all the hymns to sing, this is the one that welcomed me into Christmas. In the bleak midwinter. 

Life has been like that ever since Grant was born. I have a moment of doubt/fear/sadness and then suddenly and beautifully something appears to reassure me that everything will be okay. Take, for example, the night that my sister and her boyfriend came over for Thai takeout and my fortune cookie offered me the following:

Or coming home on Christmas morning to find our house had been adorned with new Christmas decorations, including a reindeer holding a sign that says "Believe."

Or driving home from the grocery store late the other night and passing the Trinity high school sign that read "A Light Shines in the Darkness." And then my favorite Christmas song coming on the radio.

Or opening our mailbox on the 26th to find an envelope addressed to me but without a return address. In it was a card and two hundred dollar bills. No signature. Yes, Virginia, there is a Santa Claus.

(If you did this, know that your kindness left me speechless. 

I am holding onto this card forever.

THANK YOU.)

But what I kept looking for was a road map of how to rock this new life. Someone to draw me a picture and tell me how to do this. Someone to reassure me that our little family will be more than just okay.

That picture wasn't under the tree. Nor could it have been. This is our story to write, our picture to draw, our life to live. Step up, English teachers. WRITE YOUR OWN STORY.  And on Christmas evening, just when that idea seemed overwhelming, I heard something that made me smile. Long after we put Will down to bed, I heard his sweet voice coming from his dark room. I peeked in and found him surrounded by books and his tiny car flashlight. "Hi Mama. I'm reading." The kid doesn't know how to read. But he sure can imagine. Perhaps that's all you need.

"And the day came when the risk to remain tight in a bud was more painful 

than the risk it took to blossom."--Anais Nin

I don't know what our long term looks like. We'll have to live into it. I am learning to let go and be okay with that. With these two on our team, I'm not sure we can lose:

There's still an ache. Perhaps there will always be one deep within this widening heart of mine. I am not immune to the books on DS that say "this will be a challenging, heartbreaking journey" or "with patience and a different set of dreams, you can find contentment" (Seriously--those are both on the BACK of books about DS. So hopeful.). Reading those words burns. Seeing parents with two healthy children stings a bit. Getting phone calls from Early Intervention makes me want to run and hide.

But it's almost 2014 and I'm sure as heck going to make this new year a good one. A GREAT ONE.

Our little family might look a little different, but by golly, we are going to be happy. We are going to love the heck out of each other and those around us. We are going to repay the generosity of spirit that has been given to us these past two months. We are going to reach out to people who are hurting and love all over them because we've been there and we know how life-giving it is. We are going to take pictures and read lots of good books and write and make good meals and dance in the dining room after dinner just because we can.

Together, with your help and love, we are going to write one amazing story.

See ya, 2013. Have to admit I am glad to see you go.
2014, BEHAVE.

P.S. If you happen to have a road map or a picture or a story draft of how this will turn out better than okay, sure, I know we need to figure it out ourselves, but man, would I love for you to write a comment and give us just a peek.

P.P.S. Please pray for my friend and colleague, Mike. His son and daughter were killed in a car accident two nights ago. My heart ACHES for him. Life, you sure can be cruel and hard. 2013, you just need to be over. I am not a big fan of you. 

Amazing Grace

Clay and I went to a Longest Night service at our church last night. It's designed for people who might be going through a tough time or missing someone this holiday season. Seeing as how I can't get enough of church lately (is it bad that I was tempted to "borrow" a hymnal from the pew last Sunday simply because I suddenly and overwhelmingly crave church hymns? I finally finally get the power of church music. Oh my soul, some of those songs are so healing), I signed Will up for babysitting so Clay and I could attend together. Lucky for Will, he was the ONLY kid there. Yup, turns out we were the youngest at this service by maybe 30 years. Grant was the youngest by 60 years. We couldn't help but cry laugh.

Anyways, there was a point during the service when we could walk up to a minister and ask him to pray for healing. Holding Grant, Clay and I walked up to Charles, this sweet older man that I just love for some reason; whenever he prays during church, I feel myself relaxing and recharging...I introduced myself and asked him to pray for..."Grant," he said. Puzzled, I said "yes." How did he know? Wow, these ministers are good. Later, I asked Clay about it, and Clay told me that Charles had visited the hospital several times to check on us. I never saw him. But he was there, and he kept returning.

There are good people in this world, friends. I'm talking GOOD. A goodness that takes your breath away and restores your faith in life and gives you hope and shows you the way and holds your hand through the crap of life goodness.

Oh my soul, thank God for these people.

And what I am learning is that most people are this amazingly good. Life throws people lemons and the crowds come out of the woodwork and make the sweetest frickin' lemonade. Friends don't let friends hurt alone. They see the pain and they MOBILIZE. As one of my dearest friends, Nina, told me, "I'm going to hold onto the hope for you until you're ready to take it back. In the meantime, I am HERE."

If you are reading this and you know someone who is going through a tough time and you've done something--anything--to help, you are bringing light into that person's world. Don't stop. I know firsthand how powerful being loved is. I am not saying it is justified (I have a beautiful baby lying next to me as I type this, so I realize that at some point I need to stop processing this and just. move. on.), but I have had some tough moments since Grant's birth, moments when I felt lost and alone and scared, and--no joke--every time, someone has reached out at THAT moment and reminded me that love wins.

Amazing grace indeed.

I know there will come a day when I don't need someone else to pick me up off the floor or to look me in the eyes and tell me everything is going to be okay. There will come a day when I hopefully can be that person for someone else. I know I won't be in this place forever; I won't let myself stay here. But I am letting myself BE in this place now in the hopes that I won't ever come back here. I want to feel and think and process and retreat and pray now so that I can one day close this chapter and welcome in a more joyful chapter of this new story of ours. I referenced the following in my poem the other day, but I couldn't believe it when Glennon Doyle Melton (of Momastery.com fame--if you don't read her, you should. Love her) herself responded to a comment I left her on her blog the other day. I thanked her for her post on life being hard (again: grace that she wrote this post at this time) and she responded to my comment with the following: "It is okay to feel broken and lost right up to the point when you don't. Let yourself, and your babe, be. Let it be, sister."

I am letting it all be. And as I be, I find that grace is happening all around me.

Without further ado, here are some stories of grace from the past five weeks:

1. I met my dear friend Ariana at the movies the other night. Saw The Book Thief. Perfect movie to see right now. It's all about love in the midst of life that doesn't always make sense. As I got in my car to pick her up, I noticed a Visa gift card tucked inside my driver's side window. No note. Someone just left it. It paid for our movie night. Amazing.

2. One thing I looked forward to doing during my maternity leave was actually visiting Will's preschool class and joining in on the fun. His awesome teachers email a weekly narrative about the class, and in the latest one, they informed us parents that the If You Give a Mouse a Cookie series was their favorite. Wanting to be a cool mom, I go online and then allow Will to pick the one that he would like to gift his class, thinking that I could bring it and read it when I visit. He picks If You Give a Pig a Party. The next day while Will is at school, I go to Carmichael's bookstore in the hopes of buying it, but alas, no copy is available. Someone had just bought it. Darn. I head back to Will's school to pick him up, and he excitedly hops in the backseat. "Look, Mom! We got a present!" It was a huge gift bag from our Sunday School classmates. What's the first present we open? Yup. If You Give a Pig a Party. Will was SO excited. I was speechless. What grace.

3. For a month, I stayed off Facebook. On Grant's one month birthday, though, I posted a little birth announcement. Holy Moly. It received over 100 comments from people from all parts of our life. I cherished each and every one of them, feeling like I was being hugged over and over again from these dear, dear friends who were so immediately and graciously welcoming little Grant into the world. But my favorite has to be a comment from a former student of mine. She was on the cross country team both years that I coached at GPS, and the first year she ran, she often struggled at the back of the pack. As the coach bringing up the rear, I was often her default companion on the trails. Whenever she would start to falter, I would urge her along with "keep going, friend," a phrase I'm pretty sure she hated; in fact, I'm pretty sure she sometimes wished I would fall off the nearest cliff so she could finish her run in peace. Anyways, she and I actually grew pretty close over those two years, and then she graduated and went to college and I moved away to NYC. Haven't talked with her since. Well, she commented on Grant's birth:

"An unforgettable cross country coach [Sara note: aka super annoying cross country coach] told me once 'keep going friend.'"

The way life comes full circle amazes me sometimes.

4. When I got on FB to post the announcement, the very first post on my NewsFeed was from Frederick Buechner's page. I never see his posts, but this one was staring me in the face: 

Depression is itself a kind of calm, as in becalmed, and a kind of quiet, as in a quiet despair.

Only then do you discover that he is speaking of something entirely different. He says it twice to make sure everybody understands. "Like a child quieted at its mother's breast," he says, and then again "like a child that is quieted is my soul." A kind of blessed languor that comes with being filled and somehow also fulfilled; the sense that no dark time that has ever been and no dark time that will ever be can touch this true and only time; shalom—something like that is the calm and quiet he has found. And the Lord in whom he has found it is the Lady Mother of us all. It is from her breast that he has drunk it to his soul's quieting.

Finally he tells us that hope is what his mouth is milky with, hope, which is to the hopelessness of depression what love is to the lovesick and lovelorn. "O Israel, hope in the Lord," he says, "from this time forth and for evermore." Hope like Israel. Hope for deliverance the way Israel hoped and you are already half delivered. Hope beyond hope, and—like Israel in Egypt, in Babylon, in Dachau—you hope also beyond the bounds of your own captivity, which is what depression is.

Hope in the Father who is the Mother, the Lady who is the Lord. Do not raise your eyes too high, but lower them to that holy place within you where you are fed and quieted, to that innermost manger where you are yourself the Child.
Wow.

5. One more FB reflection: In addition to all of the comments published under Grant's announcement, I have received many private messages from people who are hurting or struggling or dealing with some challenge of their own here lately...I probably would never have known about what these friends are going through if it weren't for Grant. It's been such a reminder that we must be kind to all people; we never know what battles people might be fighting. I so appreciate these friends reaching out, too;

6. I whined to Clay the other day that I never saw Christmas cards with kiddos with DS in them. Went out to lunch with a mom of a child with DS soon thereafter, and as soon I saw her, she opened her purse and pulled out a stack of Christmas cards. "I just got all these in the mail, Sara. Thought you would want to see them." She gave me one to keep; it is my new bookmark. I have no idea who these people are, but I look at their cute picture multiple times a day. I have become a stalker.

7. My college roommates have been amazing. They continue to walk with me through this 90 degree life turn, reassuring me that they want to hear what I am really feeling, not what I think I should be feeling. Still, I couldn't help but laugh when one of them texted me individually and said, "Sometimes you just need to cuss. Feel free to text me and cuss whenever you need to." Don't judge me, but I text her a lot. We've gotten closer through profanity. I love it.

8. I went to UVA, where secret societies are all the rage. Don't tell, but I've been welcomed into a secret society here in Louisville. The members are all women who are super devoted mamas, strong individuals, and upbeat friends. They are also mamas to children with DS. And they are AWESOME. They have come out of the woodwork to sit with me, talk with me, and cry with me as I walk through this...they tell me, "this is the club you never thought you'd join, and maybe the club you don't want to join, but it will be okay. And we're here for you." And without fail, they continue to text and email me encouraging, reassuring words as they pave the way for our little family to follow in their inspiring footsteps.

9. I took Grant to school on the last day before break. I was admittedly a little nervous to see everybody, but my colleagues and students loved on us the minute we walked in the door. It made me cherish our school so much more. One of the first people I saw was one of my advisees, a girl who has grown to mean a lot to me over the past two years. I gave her a hug and then she disappeared...only to return a few minutes later with a long card she had written me. How did she know I was coming? I read the card as soon as I was back in my car: "Stay positive and keep going, Mrs. Gahan. We love you, and we love Grant." This from a 16 year old. I think I'll keep those words in my back pocket forever.

Life ain't easy, and grief sucks. But love heals. And people are GOOD.

Thank you for loving us through this. And I do mean through this. Your love has inspired us.

Someone told me that Grant is going to "break your heart. WIDE OPEN." Like the Grinch, I feel like my little heart grew "three sizes that day" he was born. There have been some very real growing pains, but I know I am growing.

Courage is being scared to death... and saddling up anyway.

The journey of a thousand miles begins with a single step.

Things turn out best for people who make the best out of the way things turn out.

Advent

For nine months, I waited to meet him
and now he waits to meet me,
reaching out his reactionary arms,
his fingers splayed in the air
like he is ushering in life and breath.
His blue eyes search the world and land on me,
beseeching me to understand what he already knows:
I am yours and you are mine.
"Tell me, what is it you plan to do
with your one wild and precious life?"
Love me. I am meant to be.
The universe is, decidedly,
unfolding as it should.

A wise woman told me that
it is okay to feel broken and lost
right up to the point when you
don't. Let yourself be.
So as we both tentatively explore
this new world into which we've been born,
we rest in the just being.
You and me. Being. Waiting.
For now, that is enough.

As we wait, life goes on,
promising us nothing but
teaching us everything at once.
When are we ever not students;
you and me, we're growing together.
I've been learning a lot about grief,
that it is everywhere, following me
in a strangely comforting way
as if to remind me that
life can be beyond hard,
loss is random and universal,
we all are battling something.
It challenges us to be alone,
to break silently and privately
so that we can continue to project
beautiful lives and joyful hearts
to everyone around us
who is also hurting.
I find myself giving into the grief
in deserted mall parking lots
and the soft drink aisle at Kroger.
One trigger and the landscape around me blurs.
This grief surprises me.

And then it happens. It always does.
Grace battles back in the form of
an unexpected meal from a stranger,
an email from a mother one step ahead of me,
a note from a former cross country runner
who reminds me that when the trail feels long
and the legs feel weak, I must
k e e p
g  o  i  n  g  ,
f   r   i   e   n   d   .
Life comes full circle in this moment
and grace interrupts grief.
I'm starting to think that while
grief lingers,
grace lasts.

Life is HARD and unfair
and out. of. our. control.
(Ah, there it is again,
you darn one day at a time.)
But grace.
Grace is chosen and given.
It knows the loneliness of grief
and invites itself in to just be
until the ache abates and the darkness diminishes.
It offers words of comfort and communion,
shirking the public polish in favor of
vulnerable honesty and broken hearts
cracked open enough by experience
that there is room for you and for me,
you who patiently wait to be held and loved
and accepted for your perfection.
Yup, perfection. I mean it.
You are my gift this Christmas season.

Grief, Grace, Grant:
I used to think you might forever be related.
But as I meet your gaze and am reminded that
your life too is wild and precious and oh just beginning,
I wonder if way does indeed lead to way.
For now, let's just be, together,
and wait and watch for the miracles to unfold.

One Day At A Time

I wonder how we are going to do this,

what our life and family will look like,

in what ways I will be changed and when.

Take one day at a time, I'm told, 

so today I cherish two hugs and a kiss,

hot chocolate and fresh marshmallows,

football and cartoons and The Velveteen Rabbit,

new Christmas pj's and a text from my dad,

an invitation to coffee from a new friend,

prayers at bedtime.

I try not to think about the big things,

about what's down the road, ah this new long road,

about what I read online that scares me yet again.

I crave the known and find myself crawling into 

my son's bed at midnight just so I can listen to his breath.

He sleepily slides over, makes room for me, and

settles his fingers in between mine before

slipping back into his dreams. 

Be still and know that I am God.

In the quiet and the dark, I rest and listen.

One son, yet again, teaching me how to love another.

I rise, and as this one day slips into the next,

I return to my own bed, to my first and always love, 

and to an innocent boy with breath and fingers and dreams

of his own that are ready to be revealed to me

just as soon as I am ready to believe.

Where I Am

Ever since Grant's diagnosis, I can't stop reading books and blogs about Down Syndrome. Selfishly, I needed to read other parents' stories of a shocking diagnosis and how they got through it. I wanted to know that others have been in our shoes, that we aren't totally alone in this, that other families have been there and forged a path that ultimately ends up being joyful. And time and time again, these stories DO end up being joyful. It's always a process, but it also always results in greater love, meaning, and purpose for these parents. 

That said, I am going to stop reading these stories for awhile. Library, you can have them back.

At times, these perspectives were comforting and reassuring, inspiring and loving. At other times, they nurtured my fears and anxieties. Like Groundhog Day, I felt like I was living my life in fast forward, over and over again, as I read different parents' birth stories, open heart surgery battles, individualized education plan meetings, and internal fears and questions. Still, I couldn't get enough of these stories because they made me feel less alone. They also gave me something to picture.

But there came a point this week when I realized that the story I need to focus on is our own. There is a child in a bassinet named Grant who is going to tell his story and be a part of our story. I can read a million books, but none of them will be able to tell me what he will accomplish and what our family will look like in 2, 4, 10 years. None of them can help me understand the love he will bring to our family and the love that we will have for him. None will confirm the impact that Grant will have on Will, none can predict Grant's strengths and challenges, none can teach me the lessons that I know I will have to experience myself in order to truly learn them.

As I told a friend on the phone this week, before Grant was born, I feel like I had at least a sketchy picture of our family and its future. Grant's birth left me feeling like someone had come along and erased the entire picture, leaving me standing in front of a white board holding dry erase markers but having no clue what to draw. I felt lost, angry, and bitter about that erased picture. My sweet friend paused for a second and then said, "Grant and Will are ready to help you draw a new picture. It will be better because it won't be totally your vision."

At this time of Advent, I feel more than ever that the birth of a little baby can change everything. We may have an understanding of the world and our roles in it, but we aren't ultimately in control--and if we stop and listen and open ourselves to being changed by a child, then perhaps we will become the very people we are supposed to be. 

I can't change the fact that Grant has Down Syndrome. But I can control how I react to it. While I may have moments of grief in the days ahead, I feel like the heavy weight of sadness is lifting, and I am ready to begin drawing a new picture for our family: one of hope, of love, of possibility, of imagination, and of joy. I have no idea what is coming. But I believe in the goodness that is my husband and the potential that is my children, and I have to believe that whatever is coming is better--way better--than what I could ever imagine. 

Pushing Paisley

I love this video about a father's transformation and ultimate love for his family.

Encouragement

I am learning a lot these days--

and I am taking lots of notes, like my buddy below:

And while I have admittedly (necessarily?) retreated a bit from people since Grant's birth, I have savored every word, card, and email that has kindly come our way. Many of these words have brought me great comfort, and as a way of collecting a few of them for future reference, I thought I would include them here.

SARA'S BOYS

by Jane Henegar

Clay, Will, Grant:

Words.  The first,

a grounding fact.

You come from clay, and that means

messiness . . . and a 

return some day to clay.

Clay is the family noun,

and into him God 

breathed the breath of

life, and Clay became a

living soul.

Then came two verbs (active,

to be sure).

When you put God first, as we so

mean to do,  those boyish verbs

become a promise and

a prayer.

WILL, the promise: 

God will supply

all your needs (Hmmm,

did he say ALL?) through

his glory in Christ Jesus.*

GRANT, the prayer:

I prayed for this child, and the Lord 

has granted me what I asked of him. So now

I give him to the Lord. For his 

whole life he will be given over

to the Lord. *

And now Sara, teacher

and wordsmith: This noun,

these verbs

are where you will be from

and for,

to live with them by

promise claimed and

always, offered prayer.

Anne Lamott:

We and life are spectacularly flawed and complex. Often we do not get our way, which I hate, hate, hate. But in my saner moments, I remember that if we did, usually we would shortchange ourselves. Sometimes circumstances conspire to remind us or even let us glimpse how thin the membrane is between here and there, between birth and the grave, between the human and the divine. In wonder at the occasional direct experience of this, we say, "Thank you."

Wendell Berry:

“Love is what carries you, for it is always there, even in the dark, or most in the dark, but shining out at times like gold stitches in a piece of embroidery. ”

“The concept of a God that rights all wrongs and makes all things well is not one that I know,” Kitto wrote. “The concept of the God I know is one that lives within you and me. It is the capacity to feel love and give love … You must continue to love. You must continue to be loved. It is your love-bound obligation not to let your capacity for love wither, but to hold up what you gained and let the love that you have had flourish.”

What We Need Is Here

Geese appear high over us,
pass, and the sky closes. Abandon,
as in love or sleep, holds
them to their way, clear
in the ancient faith: what we need
is here. And we pray, not
for new earth or heaven, but to be
quiet in heart, and in eye,
clear. What we need is here. 

From NYTimes Weddings this week (come on, I have to check it): Ms. Dickinson recently started practicing yoga. For her mantra she came up with: I am my own authority. Then, she thought again. Considering the last several years of marriage — the births and deaths, the comings and goings of their combined five daughters, the blizzards, the disappearing leftovers — she realized that, in fact, she has no authority.

Her advice about how to handle the constant tide of unpredictable events? “You can’t stop it, you just can’t stop it,” she said. “It happens anyway. This is about surrender and all you have is how you get through it. Will you soldier on or will you freak out? Will you be angry? Will you say no or will you say yes?”

 She changed her mantra. It is now: Remember to surrender.

My thoughts are not your thoughts, neither are your ways my ways, saith the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts. Isaiah 55:8-9

"Notes from the Deep End"

I was thirty-seven years old when my husband and I decided it was time to have a baby. We had been married nine years, together for sixteen. We had put it off for all this time in order to focus on careers, travel, fun, ourselves. My job was pretty glamorous: vice-president of a big publishing company in New York City. My life was filled with interesting writers, fascinating trips, sparkling conversation, fine wine, speaking engagements. I saw having a baby as something to “check off a list.” Something to do. And besides, a baby would go so well with my new black suit. So I signed up for the Gwyneth Paltrow version of motherhood. The Kelly Ripa woman-on-the-go scenario. The version of motherhood that gets glamorized in People magazine. But in my heart of hearts, I was scared. Terrified. I didn’t want my life to change that much. Still, I had the anticipation of regret and I thought having a baby would be “good for me.” So picture this: parenthood, to me, was like a giant swimming pool. I saw other people in the pool and they looked okay. But I was hesitant to even stick a toe in. I didn’t want to get wet. Other parents said to me, “going into the pool can be really scary. But it’s all worth it.” I thought to myself, “if they can do it, so can I.” And, tentatively, I put my foot in the water. Suddenly someone grabbed me from behind and threw me in the deep end. In the deep end! How unfair! You don’t take the person most frightened of the water and throw them in the deep end! Throw another person in the deep end, someone who’s used to the pool! Someone who knows how to swim! “I’m going to die,” I thought. I railed against the unfairness of it all, the shock of the cold water. But instinct kicked in and clumsily I moved my arms and legs. And I did not drown. Gagging and coughing and choking and sputtering I had a question: “Who did this to me,” I wanted to know. “How did this happen?!” My head went under and panic set in. I moved my arms and legs more and I did not drown. Now I was treading water. I noticed there were other people in the deep end with me, and they were offering to help. But I didn’t want to be in their Deep End Club. And besides, I didn’t think I even belonged here, it was only a matter of time before someone told me it was all a mistake and I’d be pulled out of the pool to safety. “I should have left well enough alone. I should never have tried to go into the pool,” I thought. And as I continued to tread water I noticed something else: I did not drown. Soon I started to float. I felt pretty much alone but the panic had subsided and I knew I could survive although it wouldn’t be pleasant. And I did not drown. But then I noticed there was a little boy in the deep end with me, a little boy named Nicholas with eyes that crinkle up like half moons when he smiles. A little boy named Nicholas who loves Bruce Springsteen and Puccini’s “La Boheme” and 1940s Big Band Music. And Nicholas could swim. Looking at him, I began to realize that I might be able to do more than float someday. I might be able to swim. And I might even enjoy it. Perhaps I’d even love it. I realized that the deep end allows for underwater somersaults and in the deep end, it’s possible to dive. You can’t do that in the shallow end. And perhaps someday, with Nicholas at my side, we’d both wave to the parents at the shallow end of the pool and say, “you don’t know what you’re missing, here in the deep end.”
--Jennifer, mother of Nicholas, a child with Down Syndrome

From a new friend whose daughter has DS:

"I know how surprising the news that Grant was born with Down Syndrome must be. We are thinking of you all and would like to tell you just how wonderful raising K has been. I could never have imagined how well things would go...I wish I knew things would be like this, the day I found out K had Down Syndrome. I wish I had known that DS would only be one part of K and that there would be so much more to get to know."

Heart-to-Heart

Here's the honest-to-God truth: my heart has been aching for the past three weeks.

It's not easy or pretty to admit this, but it's where I am, and I need to own that. My heart just hurts.

It's overwhelmed with emotion right now: shock over the diagnosis, grief for the child we expected to join our family, love for our two boys, worry about Grant's future (and Will's as well), anxiety about what this will look like for our little family, guilt guilt guilt, hope about what Grant might be able to accomplish one day mixed with sobering realizations of what his challenges might look like, loneliness when I think about how few of my friends have children with special needs...

Take that, Hearts on Fire diamonds. I got you beat.

Today I realized Grant's heart has also been on overdrive. Dad and I took him to the cardiologist today, and I had another oh-my-gosh-this-is-overwhelming-moment when his tiny little heart showed up on the echocardiogram screen and I saw it beating fast-fast-fast. 

 Strangely, I felt less alone.

In fact, I felt pretty close to him at that moment, as if he and I were in the same boat in this crazy, unknown world of extra chromosomes and unknown futures. He didn't ask for this, he has no idea what is ahead of him, he too is taking things one day at a time. And he's fighting. Our doctor said that he is doing really well, and while the VSD hole hasn't gotten any smaller (yet--please keep praying that it will), the other two openings have gotten smaller, and Grant doesn't need medications to help his blood flow and oxygen intake. 

His heart seems to be healing pretty well. 

It needs some more time to be fully healed, but it is getting there. 

Slowly but surely.

In the meantime, his heart is growing, little by little.

I think mine is too.

Moments.

Due Date

This is going to change you, she said,

and I wept because I didn't want to be changed.

No, I wanted to bring a life into this world, 

but I didn't want to be changed. 

I clearly have a lot to learn.

Humbled, I retreat to live my way into the not knowing,

into the picture that suddenly is a blank canvas,

into the church hymn that winds its way

around unopened baby gifts and three day old mail.

And then he grabs my hand.

Mama, dance with me.

We twirl and laugh and, for a time, ignore the darkness 

until the music stops and he wanders to the window.

He is silent for a moment

and then turns and comes back to me.

Mama, when it gets dark in my room, the stars come out.

There it is.
Life right in front of me.

You. Are. Loved.

Two weeks ago, my world turned upside down.

Here is our story. 

Grant Benjamin Gahan was born on Nov. 12 at 4:46 p.m. after a spontaneous visit to my doctor's office simply to check his heartbeat. I hadn't felt him move for close to 24 hours, so I went in for a stress test. I heard his precious little heartbeat and figured I was on my way back to teaching A Tale of Two Cities, but my doctor suggested we do another ultrasound in order to take another look. I wasn't prepared when she took one look at the screen and told me she was sending me straight to labor and delivery; my amniotic fluid was dangerously low and the baby wasn't moving. I was only 37.5 weeks along. My pregnancy had been smooth sailing up until that point--lots of healthy ultrasounds and test results, no concerns, no red flags, no reasons to think he would come early.

Clay raced over to the hospital in time to learn the nurses' concern about our boy's heartbeat. Apparently I was already experiencing small contractions (I hadn't felt them because of the lack of fluid), and each time I had a contraction, our son's heart rate dipped. I could feel my control slipping away even more, knowing that they were about to recommend a c-section. I had told Dr. Thomas that I was open and flexible with all parts of my "birth plan," but my one priority was to avoid a c-section. I didn't have one with Will, and I really wanted to experience labor and delivery again. I had heard that this OB practice and hospital can prematurely direct women to c-sections, so I was prepared to fight for this one goal, but it wasn't to be. "He won't tolerate labor, Sara. We haven't even started pitocin yet. I don't want to get us into a situation when it's an emergency."

I cried for the first time that day. I was in shock about the timing and the delivery of our little one, but our main goal was for Baby G to be healthy, so there didn't seem to be another option. Within 30 minutes, I was in the OR getting a spinal and preparing to meet our second son.

As Clay and I held hands through yet another new experience in our marriage, we suddenly got really excited. This was happening. 9 months of anticipating and dreaming about our little family was about to transition into reality--beautiful, chaotic, loving reality. 

Clay whispered in my ear, "Grant. I think his name should be Grant." We had been discussing names for 9 months but hadn't settled on one. Grant had been one of my favorites because it often starts prayers: "Grant us strength. Grant us wisdom. Grant us courage." Benjamin had been one of Clay's favorites, inspired by the Biblical Jacob's last son. Grant Benjamin suddenly felt right to both of us. We smiled at each other in the OR, we squeezed hands, we were ready to meet him.

And then Grant Benjamin cried. The most beautiful cry. I didn't hear Will cry until 4 hours after his birth because he wasn't breathing upon arrival (what is it with me and awesome pregnancies but traumatic deliveries?), so hearing Grant's cry made me tear up all over again--this time with joy. He's here and he's healthy. It wasn't how we expected his arrival to unfold, but in the end, we were all okay. Our Team Gahan family of four had begun. We felt so, so blessed.

I will always be grateful for the precious quiet time we had with Grant right after his arrival. For 90 minutes, Clay and I held Grant in a recovery room. As I look back, I think about that time being one of great peace and understanding before everything changed.

We all headed upstairs to the Mother/Baby unit, where the nurses dropped Grant off in the nursery, promising me they would bring him back after a quick bath and check-up. Clay and I went to room 319 to exhale and celebrate with my parents. 

An hour went by. Then another. Then another. Mom and Dad left. Clay ran home to let Camden out and grab a bowl of cereal. I started texting friends our sweet news. 

And then a woman walked into my room and my heart froze. Something was wrong. I knew it. 

"Is your husband here?" she asked.

"No. He stepped out for a minute. He'll be right back."

She pulled up a chair next to my bed. I looked at her and braced myself. 

"We aren't totally sure, but your son has several markers that lead us to believe he might have Down Syndrome."

And that is when my life changed. 

She continued talking and talking, but I remember not wanting to hear it. All I could do was FEEL. My legs were still numb from the c-section, but my chest was bursting with pain. I am not proud to admit it, but the grief I experienced at that moment was unbearable. Just that morning I had been pregnant, my baby had been healthy, and I had been joyfully joking with my students that Baby G was going to "rock my world." After one surprising turn of events after another, I found myself broken. My world was rocked and I didn't want any part of it. I wanted to disappear into the hospital bed sheets, into Clay's arms, into my parents' love and then wake up realizing it had all been a dream.

I called my parents, and they rushed back to the hospital; I would come to rely on them more than ever. Clay returned and somehow I broke the news to him. Our incredible pediatrician came to the hospital at 10:30 that evening to check on Grant and be with us as we tried to understand if the sudden diagnosis was true. Everyone told us that the echocardiogram performed that evening would be telling; 50% of babies born with Down Syndrome have heart defects. At 12:30 that night, the same nurse practitioner that delivered the diagnosis to me earlier told us that Grant has a small VSD (ventricular septal defect), a PDA (patent ductus arteriosus), and a PFO (patent foramen ovale). It was all too much to bear. As I laid in bed that night, unable to sleep, my mind raced. How did we not know? How will this affect Will? How will this affect our marriage?What other medical issues are we dealing with? Will I have to quit my job? Will Grant be able to go to school? What will his life look like? Why us? I came to hate the quiet of the nights.

As soon as the morning light arrived, Clay and I held hands and made our way down to the NICU to see our son. Room #1 became our second home those nine days. Usually in a daze, Clay and I would check in with Grant's nurse; meet with neonatologists, a cardiologist, and a geneticist; and eventually get to hold him, wires and all. Our life's rhythm was punctuated by beeping machines and platelet count levels. The director of Down Syndrome of Louisville came to visit. We received three copies of Raising a Baby with Down Syndrome. The chromosome test confirmed the diagnosis. In the midst of all of this, we were mostly numb and still in shock. This was so different from what we expected, and while the nurses and specialists were sensitive, at times I couldn't believe what they were telling us. My pregnancy had been a textbook case; every visit, I made sure to ask if anything looked wrong. "He looks perfect, Sara," was the constant refrain. Everyone around us seemed to be having healthy babies. I was 32 when we conceived, and nothing on the ultrasounds or tests came back even slightly abnormal. And yet here we were. The landscape that we were used to seeing suddenly and radically changed.

I grieved the loss of the baby we expected would join our family. I felt guilty and responsible and questioned every step of my pregnancy. I worried about Grant's future and our future and Will's future. I felt I had let every one down without meaning to or knowing it or understanding why. I was and still am overwhelmed with emotion. I cried more in that darn NICU room than I have at any other time in my life. I was broken, lost, despairing, and scared. I wanted my old life back.

Our only way of coping seemed to be visiting Grant. When we were with him, all of the daunting information about the diagnosis faded a bit; he was first and foremost our son, and we found him utterly beautiful. I also longed to be with Will, to go home and play Legos with him and regain the beautiful rhythm of our family that I had taken for granted just days before. In many ways, Will was my saving grace.

I also fell even more in love with Clay.  I'll never forget confessing my love for Clay to his parents in that NICU room; in one of many teary breakdowns, I told them that their son had made my life, that he was such a good man, that I would work hard to give their son and our family a happy life. Clay was so immediately loving, so immediately accepting of Grant. I will never forget when Clay looked at me and said, "Grant has feelings. He needs us. He is hurting now, too." That was a turning point for me. I am his mama. Clay is his daddy. He is our son. And Down Syndrome doesn't change that. It changes some things, but it certainly doesn't change that.

But in general, the days after Grant's birth were very, very difficult.

In the midst of all the pain, though, something else was happening:  We were being loved. FIERCELY and OVERWHELMINGLY LOVED.  Loved harder and more than I have ever known. 

It started with my parents who didn't leave our sides and managed communication with everyone we didn't have the strength to reach out to on our own. My sister flew in from San Francisco on a moment's notice so she could hold me as I wept in my hospital bed. Clay's parents flew in from Texas so they could love on sweet Grant (and me and Clay). Emails poured in from friends both old and new, close and casual. My college roommates group texted me constantly, offering words of encouragement for me and Clay and words of strength and love for Grant. Colleagues stepped up to help both of us cover our classes and responsibilities. My mama's incredible circle of friends kicked into immediate action and overwhelmed us with food and gifts and cards. Three meal trains were set up. One of my advisees videotaped himself playing a song on the piano that helped him through challenging times. Three churches delivered prayer shawls, and ministers came to comfort us. I spoke with two wonderful mamas who have children with Down Syndrome, and they both reassured me that life would be full of challenges, yes, but also great joys. And the texts, oh the texts, from friends who refused to give up on us despite the fact that we usually didn't text back, didn't know what to say, didn't really know what life looked like for us anymore. They kept texting, they kept writing, they kept sending us words of encouragement and hope even when they were met with radio silence. But I read every one--and I can easily say that those words are what got me through the really difficult minutes. They still do. I have saved every one.

We were overwhelmed by the unknown. But we were also overwhelmed by the known: love wins. Every time. LOVE WINS.


And I started to feel that if this many people could show up and love love love us this powerfully and selflessly and genuinely and KINDLY, then maybe just maybe our little family, surrounded and supported by this incredible village, could do this. I had a choice: I could stay sad and angry and focused on the picture of the family I expected to have, or I could focus on the joy that permeated my life before Grant and certainly would increase because of him. I needed to stop wondering why or how this happened and instead start loving the heck out of my son.  He is here, he is ours, and he is LOVED. While this hospital may have been a place of sorrow for us, Clay and I were determined that our home would be full of happiness and love. Grant deserves that. Our son Will deserves that. We deserve that. Our lives were not over. A new life just might be beginning.

We left the NICU on Thursday, November 21, nine days after Grant's birth. We had to procure a special car bed since he couldn't maintain his oxygen levels in a standard car seat, but I would have driven to Alaska to get it as long as it meant bringing Grant home. I am forever indebted to the heavenly NICU nurses who so lovingly cared for Grant (and us), but I was ready to break free of Room 1 and be together as a family. I was especially ready to be with Will, my first beautiful son. As we packed up the pictures and signs that my sister and mom had brought to decorate the room (God bless them), the petite, all-business neonatologist walked in. My heart sank. She always delivered bad news. Once again, I braced myself. We were so close to leaving. She looked at me and Clay and, for the first time, she smiled.

"I always hope that our babies go home to good families. You guys are a good family. I know this has been hard, but you will be fine. You can do this. Grant is lucky to be in your family."

And for the last time in that darn NICU, holding my fragile son in my arms and standing next to the man I love more today than ever before, I cried. It was the first time she had softened, and it gave me a glimpse of the grace I pray we experience as we travel this unfamiliar road. And she was right: our family is amazing. Clay, Will, Grant, and I are beyond blessed to have parents, siblings, aunts, uncles, cousins, and friends who are considered family surrounding us as we take baby steps forward. I know it isn't going to be easy, and there is certainly a lot to learn about Grant and what he will need to thrive as he grows into the person he is meant to be, but at least we know where to start: by loving him. 

Then we came home to this guy:

As Will laid eyes on his baby brother for the first time, his sense of pride inspired me yet again.

I love Will with every ounce of my being.

I love Clay with every ounce of my being.

And Baby Grant, you better believe I love you with every ounce of my being too.

How blessed am I to be so in love with these men?

These are my greatest gifts.

I am going to live my life focused on this love.

Yup. Love wins.

It's been two weeks now, and I still struggle. I know I will for awhile. I am not necessarily proud of that fact, but I am letting myself feel and heal my way through this. But thanks to you all, I know that life is good and beautiful and lovely. It's full of possibilities.

And when you open your heart to others, it's full of life-changing, soul-comforting, awe-inspiring
LOVE. 

Thank you for opening your hearts to us. Thank you for loving our little family through this. Thank you for your words, your prayers, your hugs, your kindness, your friendship. Thank you for not giving up on us. And thank you for showing us, over and over again, that love is more powerful than anything.

Our little family is ready to love you back.

Kindness
by Naomi Shihab Nye

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing. 
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.

Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you everywhere
like a shadow or a friend.