On Disability

Having Grant has introduced me to an entirely new vocabulary. Down Syndrome, First Steps, Otolaryngology (ENT doctors), VSDs and DIs and PTs and OTs...bring it on. I'm learning.

But over the past three months, I've come to believe that some words in this vocabulary just aren't right. There's been national campaigns against the R-word, so I feel like we are making headway there, but there are some other words that this English teacher still won't accept (and I'm pretty sure I am past the denial phase in this grief process, so perhaps I am being defensive and naive here, but hopefully I am just being human). I'll be honest, too: I didn't really think about these words before Grant, and I know I used them, but now the meanings of these words really matter to me. And I just don't think they fit.

1. "Special" comes across as code for "different." Sure, my son is special--but he is special because he is a PERSON and all people are special.

2. "Down's Child." I didn't really understand the person-first argument until Grant was born. I kept hearing he was a Down's child, and I was okay with that...but the more I hold him and get to know him, the more possessive and proud of him I am. He's my child; Down Syndrome doesn't get to claim him. He is Grant, a beautiful and loved child of God who is going to laugh and play and read. And he'll have an extra chromosome. It will always be part of who he is. Only part.

But the word DISABILITY is the one that leaves me shaking my head. 

"Dis" means "apart" or "lacking." Lacking ability? Are we serious? The more I learn about people who are categorized this way, the more I am certain we've got this title WAY wrong. 

WAY WRONG.

Is this blind Boston Marathon runner lacking ability?

 Are these Special Olympians lacking ability?

Is Patrick Henry Hughes LACKING ABILITY?

The more I fall in love with this little guy, the more I refuse to accept this label.

In fact, people who have to rise above physical and intellectual challenges every day seem 

SUPER-abled to me. 

They have to work EXTRA hard to achieve what most of us take for granted. 

And yet they remain focused, determined, STRONG.

Disabled.

I just don't understand this one.

My son is not disabled.

He will be ABLE to do whatever he sets his mind to,

and the fact that it might take him longer and more effort to get there

means that he is STRONGER than I. 

He didn't do anything to cause Down Syndrome. None of us did.

It was a genetic fluke that occurred at conception. 

He didn't ask for it, he doesn't deserve it.

But I know he will succeed despite it. 

And that makes him SUPER-ABLED.

In fact, that makes him already my hero.

One final note: My dear friend Maresa asked me today about Will.

"He's great. He's become one of my best friends."

My three year old son is one of my best friends. 

I know it sounds ridiculous, but I also kind of think it sounds pretty beautiful.

We also have a theme song. 

We turn this up loud on our way to and from preschool,

and we laugh and dance.

I belong to you, you belong to me. You're my sweetheart.

These two sweethearts belong to me. I belong to them.

I am beyond lucky.

P.S. And then there is this. Sigh. All I can think about is the fact that people don't choose to be born with challenges. From the very start, they are different, challenged, and judged. This is so insanely unfair. Doing anything other than loving and helping and respecting them for the valuable people they are is unacceptable. When are we going to learn that we are all in this together? That we need to take care of each other? 

Forever a Parent

I am typing this one-handed; Grant is nestled against my chest with the other arm. We've spent a lot of time like this lately. He is healing my heart one hug at a time. With each snuggle, he claims me more as his mama, and my instinct to protect and nurture him strengthens. When I look at him, I no longer immediately see Down Syndrome; rather, I see innocence and vulnerability and patience. His eyes, more and more open these days, search me for a sense of belonging. Love, you are mine. I will always claim you and embrace you and believe in you. Your mama is always going to be right here, loving you gratefully. 

One of the first thoughts I had when that nurse walked in and uttered the words Down Syndrome was that Clay and I would be parents forever. Here I was, still numb from the c-section, and I was wishing away parenthood. It's amazing how before I even became a parent, I had images of what my parenting experience would look like: chubby baby legs, bedtime stories, first days of school, family dinners, soccer practices, dances, shopping for a college. Clay and I would cry as we drove away from the beautiful quad somewhere but we'd also embrace lazy mornings without sporting events and uninterrupted bookstore wanderings. We'd pat ourselves on the back and say man, I hope we raised them right and look forward to the phone calls home while we drank a bottle of wine and watched whatever shows we darn felt like watching. 

I laugh when I think about this image now because I have come to powerfully realize three things:

1. Individuals with Down Syndrome continue to surpass every expectation that might exist for them. Adults with DS are working a myriad of jobs and living independently--and most didn't have the benefit of Early Intervention, which studies show dramatically improves their development and abilities. I met an 8 year-old the other day who is ahead of her reading level and beautifully verbal, social, and physical. I was encouraged.

2. I love that I thought parenting ended when the kids go to college. Clay's and my parents must be cracking up at that notion. One thing I have learned through this experience (ah, what haven't I learned?) is that PARENTING NEVER ENDS. I am 33 years old and need my parents more than ever. They were the first and only call I made right after the diagnosis. Clay's parents dropped everything and flew into town because we so clearly needed them. In the days following Grant's birth, my mother managed everything for me--communication with friends and family, meals, Will's care, transportation to and from the NICU--because it was all I could do to hold myself semi-together in the face of all the doctors and nurses examining Grant. When Clay's mother came to stay with us for a week (thank the LORD), I was a total zombie--and she took care of our little family and our little house like she wouldn't want to be doing anything else (which we all know isn't true--we all were a hot mess that week). Clay and I went over to our friends' house on Saturday night and my parents babysat. Got a career question? We call our parents. Check our emails and mailbox...yup, consistent love there from our parents. We haven't let our poor parents go, so why would I think parenting ends when kids turn 18? Sure, it constantly changes, but we will always be parents to Will and we will always be parents to Grant. And the more I think about it, the more I believe that to be a gift. I don't ever want to NOT be their mama (except maybe when they throw a crazy tantrum in Target. Then I will walk away and pretend not to know them).

3. My love for Grant doubles every time I look at him. I am starting to think life with him around, if that is what our lives look like, might just be exactly what we need.

I don't know much these days. But I do know these two things:

1.) I am called to be Grant's mama. 

2.) Everything is going to be okay.

I am also noticing disability (I hate this term, by the way) everywhere I turn. Here are two cool stories about the way "disability" brings forth transformative love. Pretty darn beautiful. 

Love always.

On Revision

I proctored an admissions test in my classroom last weekend, an experience that honestly left me feeling disoriented and emotional. This room is exactly the same as it was before Grant was born. But I feel so different.

I texted my friend while I was there, and she offered the following insight:

I anticipate that your new vision, seeing things differently, will become a gift to you and those you work with and among. Revisioning, right?

Right. Revision. Of course. Life, I gotta hand it to you: you sure know how to make this teacher practice what she preaches. There are many parts of the writing process that I urge my students to carefully consider and apply, but none is more important than revision. I beg my students to see this step in the process as space in which the rough gets polished, the raw gets refined, the essence gets culled and the superfluous falls away. Re-vision. Seeing the original draft with a sharper, fresher perspective for the purpose of making the final draft stronger and more focused. True revision is way more than just an edit; it involves adding new material and taking unnecessary material away and changing words and rearranging content. It results in a better final product.

Revision. Re-vision. I love it. I am living it.

I talked to my sister two days ago, and she asked about my job, which is a topic we used to talk about a lot. I've always been a pretty career-driven, type-A, planner-wielding person, and my sister, well, she pretty much saves the world every day in her job out in California, so we have fun talking about what we are each learning and doing. She knows both my past experiences and my future dreams as an educator, and she urged me in this conversation to keep pursuing those dreams. And I will. But I was also able to articulate, for the first time, that some of my dreams are changing.

I still hope that one day I can help lead a school, its students, and its faculty to meaningful, rewarding, enlightening work. However, this experience has helped me slow down and really appreciate all of the people and experiences in my life that are meaningful, rewarding, enlightening. The moment that the nurse practitioner came in Room 317 and told me that Grant may have Down Syndrome, I felt like the floor gave way and I disappeared into a black hole in which the world I once knew no longer existed. And after days of wandering past joyful mamas in the maternity wing on my way to the NICU, I remember looking at Clay and saying, "All I want is for us to be happy." I want Will to have a joyful childhood, and I want Clay to be happy in the midst of all the work he does for our family, and ultimately all I want for Grant is for him to be happy. Forget buying a house. Forget the new role at work. Knowing such sadness, all I wanted was to not be sad. I just kept praying that our little family would be happy and joyful once again and for a long time.

For most of my life, I wasn't content with where I was; I was always looking ahead and wanting more. That's changed. I am now focused on today, on doing my best and on appreciating the beauty in today. And there's a lot of it. When you stop looking ahead, it's amazing all the beauty you see around you.

I like this new perspective. It's not easy for me to always stay in the moment, and I know at times it is important to look and think ahead and do what we can now to ensure good in the future, but I like feeling and seeing life so intensely. The future will reveal itself inch by inch :).

Tonight, and always, I am grateful for revision.

Healing

 "The secret of change is to focus all of your energy not on fighting the old but on building the new." 

--Socrates

I feel like we're starting to build the new, people. Don't tell Grief-who-often-comes-along-with-a-surprise-diagnosis this, but Healing has moved into our home and I am inviting him to stay. Sadness, I am kind of over you. I know you might have to visit every once in awhile, like in the form of endless disability paperwork or discouraging comments on an otherwise great article about Down Syndrome, but this home just isn't right for you. We're more of a healing-happy-grateful type of home. So there. LEAVE.

That said, this walk through grief has been illuminating. In a weird way, I am glad I have experienced it. And while our grief may seem silly when parents are grieving the loss of their children or spouses are grieving the loss of their best friends, one thing I have learned is that you can't judge another's grief. You can't get OVER grief; you have to walk right through it. People all around us are walking through all sorts of grief, and I am convinced now that loving them through it means loving them through it. Healing is painful. Someone told me this week to think of grief like open-heart surgery: after the surgery, many different therapists arrive to lead you through exercises that can be very painful...but they heal.  And you'll always have the scar from the surgery, but with time and love and support, your heart will beat strongly again. One day at a time. Keep going, friend.

"I don't believe that grief passes away. It has its time and place forever. More time is added to it; it becomes a story within a story. But grief and griever alike endure." -- Wendell Berry

I did ask someone this week why I couldn't just get over this, why I continue to worry how this will affect Will, why I react so emotionally to the questions we have about Grant's health and future. This kind person smiled. "Because you love them so much. The depth of grief can mirror the depth of love." And just like that, this person freed me from the guilt I had been feeling about the grief.

I have stopped asking "Why?" Why does Grant have DS? Why us? Why anyone? Why didn't we know ahead of time? I accepted that there weren't any answers to these questions and moved on. But someone else told me this week that, like a three year old asking "Why do I have to go to bed?" we often aren't looking for answers; we're crying out in anguish because we want things to be different. We want change.

Now I am realizing that I am the one who needs to change. I need to open my heart and open my eyes, I need to move forward and build the new instead of fighting the old. I need to let go. I need to appreciate the little things knowing they turn into the big things. I need to trust that things will turn out beautifully. Just like beautiful pictures are developed from negatives in a dark room, I need to believe that in this darkness a striking picture will emerge.

Here's to doing the next right thing. Here's to holding Grant. Here's to celebrating his five ounce weight gain. Here's to reading books to my boys. Here's to hanging up their artwork and making them pancakes and really listening to them. Here's to hugging my husband. Here's to staying up late and watching a funny movie. Here's to breathing and smiling and reading and writing. Here's to filling up today with love instead of worry. Here's to feeling joy and hope and, yes, grief, deeply. Here's to living everything.

You are so young, so much before all beginning, and I would like to beg you to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, 

without even noticing it, live your way into the answer. 

-- Rainer Maria Rilke

"Do not go where the path may lead. Go instead where there is no path and leave a trail." 

-- Emerson

"You only live once. But if you do it right, once is enough." 

--Mae West

The Love of a Mom

What does it mean to be a mother?

It means transformation and confirmation,

vulnerability and sacrifice,

sleepless nights because they're there and

then sleepless nights because they're not there,

worrying and wondering and wandering

and finding peace with letting go,

opening up, giving in, not giving up,

never giving up, no, showing up, yes,

growing to love the happy mess,

carpool and play dates and sloppy kisses,

brilliantly swept paintings on newspaper,

clay figurines that don't make sense to anyone

but you. The creation is perfect.

You make lunches and make believe,

adopting their dreams as your own,

holding their hands and swallowing your pride,

watching and waiting and listening and

loving with abandon and adoration.

You cry, crawl, walk right alongside,

growing up in their shadow and 

eventually following their lead,

trying to teach them manners and numbers

while they teach you patience and perspective. 

In this complicated world, 

the smallest things matter most.

Revision.

These days, I am learning a lot about the type of mother I want to become. Thankfully, I am surrounded by inspiration. Just yesterday, I met with another mother of a child with DS. She has three sons, and her oldest has DS. She's adorable--and she's tough. She admits her son's diagnosis made her tougher, keeps making her tougher as she realizes she needs to be his greatest advocate in a world that can so easily dismiss him. Her mantra? "It is what it is." "But," she said, "it is GOOD."  She too welcomed me to "the club," as they all call it, this quiet society of fierce mamas of children with special needs. It's the club you never really wanted or expected to join, but the initiation is instant and the support genuine. These women are (excuse the cussing) badass. They are badass hard core. But you'd never suspect that layer when you meet them because their smiles are so big and warm. Even better. They're deceptively hard core badasses. And I kind of want to be them. 

But I don't have to look that far to know the type of mother I hope to become. In every moment of need, my mother has been there. At my moments of greatest joy, my mother has been there. When I was sick at school, my mom brought me home and took care of me. When I struggled to finish my first marathon, my mother walked alongside me. When I got married, my mom helped me with every important detail. When I delivered my first child, my mom was in the room. And in this time of soul-searching reflection, my mom continues to be right here. She loves me gracefully, kindly, selflessly, but she also loves me with a strength that cannot be shaken. I never stop needing her.

It is one of the beautiful facts of life that we are children before we are parents. We are given models for years before we love our own children into being. That's how it should be. We have to fully receive and feel the love of a parent before we can ever begin to try to give it ourselves. Even then, it takes incredible strength and selflessness. Loving the child might be instinctive--it's allowing your love for that child to serve as a foundation in an ever-changing and ever-challenging world that takes strength. My parents loved me into being. Clay's parents loved him into being. For years, we have been fiercely and selflessly and joyfully loved. We still are. They continue to love us with everything they have. Our parents could not have given us a greater gift. Because of them, our hearts are full, overflowing even, and we rejoice in the opportunity to love our boys into being exactly who God made them to be. There is a lot about this parenting thing we are still learning, but we know where to start: with love. And we also know it never ends.

(Have you seen these Proctor and Gamble commercials? Oh my, I love them)

Clay reassured me today that "we gotta walk before we run before we fly." Our little family--at least me--is still walking on this new path.  But I hold out hope that one day we will run. And eventually we will fly. I think Grant is on board. I put him down on his belly the other day and he promptly rolled over. Check that developmental milestone right off the list. Here he is showing off his new skills:

Finally, my awesome aunt Michelle sent me a link to this great piece: "Why being a mom is enough."

Love always.

Learning

Okay, team, I'm figuring some things out. How to close up the hole in Grant's heart isn't one of them (argh!) and how to handle this with tons of grace (yet--give me some more time and I swear I'll get there) isn't another. But as I weave my way through these days, finding comfort in being quiet and still and aware, I feel more alive than ever. Raw alive but alive. And amazed. 

You see, I used to think that LIFE IS BEAUTIFUL because for the most part, things go well and careers eventually advance and weekends are fun and gummy bears are just $1. Sure, life is hard-ish every once in awhile, but hey, you're tough and you don't quit and things eventually straighten. 

But now I am thinking that LIFE IS HARD because diseases like cancer exist and car accidents happen and people who want to have children have trouble getting pregnant and work grants fall through and people are hungry around the world for no fault of their own. Dang it, life. Why do you have to challenge us like this?

And as I am suddenly and powerfully aware of the fact that EVERYONE goes through hard times and life often isn't fair and doesn't make sense, I am struck by the insane strength of the people around me. It's almost like everyone has learned this lesson already and I am just now catching on to this deeper layer of living. Just today, I ran into a mentor of mine going through a divorce, texted with a friend who just found out she didn't get the job she really really wanted, and got an email from a friend who has recently lost several close family members. Did they talk about all that? No. I just now see it. People around us are dealing with hard things--and they are enduring. Man, people are STRONG.

So how do you walk through THE HARD and come out the other side? Or at least keep walking? 

I'm learning the trick.

You lean on the love. 

For example, yesterday Clay and I took Grant to the cardiologist to see if the three holes in his heart were closing (they aren't). The minute we sat down to check in for the echocardiogram, the receptionist casually presented us with an insanely high bill. I struggled to hold back the tears, not because I was primarily concerned about the money but because once again I felt so out of control. Why were we HERE? How is this happening? How do I let go and be okay with this new path when every turn seems to hold some sort of disheartening, challenging surprise? 

Ding. A text from a dear friend: "There will always be days that hurt too much to breathe, days when you literally want to throw up the pain...but more and more, with time, there are also days of peace and a gritty joy that is beyond happiness."

Dang. How did she get so wise? Yup. Experience.

After getting the tests done and before the cardiologist came in to deliver his interpretation of them, my phone buzzed again. This time, it was a video text from a friend in NYC, a friend I would never have met had Clay and I not taken THAT leap of faith and moved into the Columbia dorms for a year: "Hey Sara. Just thinking of you and saying hi. We love you."

One more.

The cardiologist comes in and doesn't have any encouraging report to give, and then he tells us that we may be coming to him regularly for the rest of Grant's life. Awesome. I mean, he's a nice guy and all, but REALLY? Can't I just enjoy my baby? Can we please get him healthy? 

Then my husband reaches for my hand, rubs Grant's belly, and loves me through that tough moment. 

LIFE IS HARD. IT'S THE PEOPLE THAT ARE BEAUTIFUL.

Thank God we have each other as we each strive to navigate this crazy thing called life.

I've always liked Corinthians 13:4-7, but I've never REALLY paid attention to the specific words Paul writes about love until now. Way to go, Paul. Good diction here, buddy. Your word choice is DEAD ON. Because this love that I have felt from you all AND this love that I feel for Grant is first and foremost patient. It allows me to just BE, it allows Grant to just BE, it waits and holds on and understands. This love is also kind, especially in the face of pain and fear and uncertainty. And as Clay and I seek to protect our boys, we trust and hope that at the end of the day, we are more than okay. We trust that love will persevere, that in the midst of fear and difference and anxiety that this life introduces to everyone at different times and in different ways, LOVE WILL WIN. It will never fail.

A mother of a child with DS told me a couple weeks ago that I should choose a mantra to repeat to myself over and over again, especially when I think a tough thought or see a tough video or read a tough report on DS. She said she covered the inside of her car with post-it notes with her mantra: Hold on. I've got a few that have helped me: Keep going, friend. Believe. Love is patient. Love wins.

Last thought: I told my dad the other day that I am struggling to just see GRANT--that I look at him and see Grant AND Down Syndrome.

"Sara," he said, "you need to start seeing 'AMAZING' written across his forehead."

Love it, Dad. Thank you.

Love to you all always.

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."