Enough is enough.

What a difference three months makes. 

Right after Grant was born and when we were still in the NICU, several people mentioned that I needed to meet Libby, a mama a few steps ahead of us on this new path. Libby, Libby, Libby. I kept hearing her name. I wasn't ready to talk to most people at that time, but there came a day when Clay was back at work and the hospital felt claustrophobic and I got really scared about what the future held and Grant's doctors didn't have much good news, and I reached for my phone and called...Libby. Totally out of the blue. The conversation went something like this:

Sara: Hi. Libby? This is Sara. I know you don't know me, but our son, Grant, was just born and I didn't know if maybe we could talk.

Libby: Where are you?

Sara: In the NICU.

Libby: I'm on my way.

That's how mamas roll. You need me. I'm there. Amazing.

I walked out of the doors of the NICU and into her arms. Never met this woman before, but I felt like we had rushed the same damn sorority and that I could be all raw and open with her. She floated into Grant's room and gushed about how beautiful he was. I immediately felt less alone. 

Then a nurse walked in. "Sara, if you want a chance of getting Grant home today, you need to drive downtown right now and pick up one of these therapeutic car beds."

My heart fell. We had been trying to get Grant home for days, so I was willing to do anything, but the timing just felt cruel. My first conversation with another mama in these shoes and I had to leave. I nodded and felt the tears coming. Again. 

Libby grabbed my hand. "I'm going with you. Let's go."

And like that, her name was added to my list of role models. She knew where I was. She had been there. And SHE SHOWED UP. This mama of four hasn't stopped showing up for me since. 

Fast forward (hmm...not really. Slow forward. Yes, slow forward, like longest months of my life forward) three months.

Last night she and I and our awesome husbands went on a double date. We laughed and shared stories and talked about how much we love our children and what we have already learned from them. And when we got up to leave, I thought back to our first meeting, a time when I felt more broken than ever before in my life, and I smiled knowing that neither one of us were still in that damn dark diagnosis place (ugh, I shudder to remember it). It's not that life is easy now--is life ever easy?--or that we love that our children are "special" or that we've got our heads in the sand or that there aren't many moments that are hard and will be hard. Instead, I think we have both found perspective (and friendship) in this deep end we've been pushed into. 

Three months ago, when Libby and I were in my car on the way to yet another hospital, she asked me, "you want to keep on driving, don't you? Away from all this?" 

Yes. I did.

"You feel like your heart is broken, don't you?"

Yes. I did.

She nodded. Pause.

"Grant will heal it. He's broken it wide open. He'll heal it."

I didn't believe her.

Now I do. 

I now believe that my heart was broken wide open so that it could become bigger, knowing all the while that I would need more room to hold this insane amount of love I now feel for Grant, for both my sons. Three months ago, I wept with sadness. This week, I wept because I love Grant so much, because I now genuinely feel that I would do anything in the world for him, that I would claim him (and Will) before all others, that I would be proud of him every day of my life and proclaim him my best buddy, that I believe in him tremendously and always will. 

I went back to work last week. A sweet colleague stopped me in the hallway one day and seemed worried. "Are you okay? I know your life is so full right now. Appointments and papers to grade and meetings and nursing..." but I had stopped listening to her. Did you hear what she said? I know your life is so full right now. 

Friends, my life is FULL. 

Do you see me smiling as I write this? Before I had Grant, I saw my days and life as a to-do list. Work hard in this job so you can hopefully get that job, run to the grocery to get food that you will quickly eat in between walking the dog and bathtime, run these miles so you can say you did, go to bed tired so you can wake up and do it all again.

And then Grant was born and life stopped for a bit and I started really seeing things. I stopped talking and started listening, I stopped running and started admiring, I stopped doing and started BEING. 

And my days that were once full of obligations transformed into days full of opportunities. 

I seriously looked around and thought, "Dang, there is so much beauty all around me. Have I really been looking right past all this??"

And at the end of the day, I now know that is enough. Life isn't about getting a bigger house or the impressive job or the perfect-looking family. It's about loving each other as much as we can. That is enough. That will always be enough. 

I told my students the other day that they are ENOUGH. In this world of college applications and grades and awards, I watch kids feel all the time that they are not smart enough or skinny enough or cool enough or good enough. These beautiful people I teach every day beat themselves up because they already feel behind. They are sixteen and already feel behind. I didn't see that before because I was right there with them. But now I look around and see all these people, teenagers and adults and super "successful" people, wondering if they've done enough, if they have enough. We're all working for more.

Oh my. 

Friends, you are SO ENOUGH. 

You don't have to DO anything. At the end of the day, YOU ARE ENOUGH. 

On Valentine's Day, Clay and I collapsed after putting Will to bed and he said, "I'm sorry. I don't have anything to give you." I almost laughed out loud. Nothing to give me, huh? How about your unconditional support these past three months when I felt lost? How about the friendship you give me everyday? How about those two beautiful boys asleep in the next room? How about that kiss when we woke up? How about the fact that you come home to me, to us, every day after a day of working hard for others? How about the faith you had in me when you proposed to me eight years ago and asked me to spend my life with you?

HE is my way more than enough.

And in this world where people are often assessed by their alma maters and degrees and job titles and savings account balances, I want to whisper in Grant's ear, "You are enough, my love. You will always be enough. I used to care that you might not go to college or be totally independent (and who knows? A lot can change in 18 years), but every day, I care less about that and more about you. Less about what this world says is okay and more about who you were created to be. And whoever you are created to be is ENOUGH."

I asked Will to sing me a song yesterday. Guess what he sang? "I love you just the way you are." I never taught him that song. That, my friends, is grace. I'm not sure I would have heard him sing that song before Grant was born. I think I would have been too preoccupied trying to be enough.

And in one more example of grace, I stepped back into the classroom when my students were halfway through Life of Pi. If you haven't read it before, pick it up. It tells the story of this boy whose life suddenly takes a dramatic and permanent turn: he is the only human survivor of a ship that sinks in the Pacific. As the days drag on, he loses his food supply, his clothing, his solar flares, his eyesight...it's just him and the water and this tiger who also happened to survive. But he doesn't lose his faith. And he doesn't lose hope. And at the end of the story, he tells these two incredulous interviewers about his journey. And he basically says, "You can choose to believe or choose not to believe. I choose to believe. Some of the most meaningful things in life--God, love, dreams--depend upon you BELIEVING they are possible."

And so I choose to believe in my son. I hear the doctors when they warn me about what he may not be able to do. Three months ago, I focused on their words. Now, I focus on my son and his smile and his sweet baby smell and my friend Libby and "I love you just the way you are" and LOVE. Who knows what will be. But believing in my son and my little family and the love of the beautiful people around us is more than enough. One day at a time. There's more than enough in this day--THIS DAY--to love.

And while I hope I stay in education for a long time because I am better for knowing and learning from my students, I do have to admit my dreams are changing. One of my new dreams involves doing something similar to what this awesome mama--and community--has done. I would love to work alongside my son one day. Hopefully this world will give him lots of opportunities to shine. But if not, I want to create some for him.

                                    

Love from us to you.

 A few pictures from Gramma's visit. We miss her something fierce. Her presence heals us.

One more cool video. Tough moms raise tough kids.

YES.

I also think tough kids raise tough moms.

Grant is tough. He and Will are already my greatest teachers.

I love them both so very, very much.

Until it does

You don't think you'll have a child with a disability.
You don't think you'll be on the receiving end of charity.
You don't think those remote statistics will affect you
or that your child may need special education
or that the Special Olympics drop-off clothing container will hit home
or that you will be part of an online parent support group
or that you will be a family that is just a little bit different
or that the birth of your child will involve anything more than joy,
pure, uncontained, heartbursting joy.

Until it does. You do. You are.
Split second. That's how long it takes for life to change.

You don't think your heart is big and wide and deep enough.
You don't think you know anyone who has experienced this.
You don't think your dreams can be revised
or that your child will be fully and unconditionally accepted
or that people could be this kind and thoughtful
or that your marriage could get even closer
or that you will learn so much about what it means to live and love
or that what you thought was joy was just a glimpse of this new
pure, uncontained, heartbursting joy.

Until it does. You do. You are.
It takes longer than a split second, but you do change.
Perhaps for the better.


For a beautiful video that illustrates just how the love of a child can change you, check this out:

For My Students

I return to the classroom tomorrow. Part of the reason I love teaching is because I fall in love with these students of mine and learn from their stories, which are already rich with experience and wisdom in just 16 years of life. It's only fair that I likewise open myself up to them. They know Grant has Down Syndrome, but I haven't yet been in a place to share more with them. They don't need (nor want, I'm sure!) to read a lot of what I have written during this tender time, but I do want to share with them who I am as a mother, writer, and person. They also need to know that like them, I am still learning. 

Here's part of what I plan to say to them on Monday (and if you have been reading this blog (you are so nice!), then a lot of this will look familiar...):


As you all know, Grant was born on Nov. 12 and was diagnosed with Down Syndrome six hours after his birth. Mr. Gahan and I were shocked. Up until that point, the pregnancy had been fairly textbook, so this diagnosis caught us off guard and left us feeling like the floor beneath us had given way. After feeling such joy at the birth of our son, we suddenly were thrust into this whole new world of uncertainty and fear. The questions dogged us: What does this mean for Grant's health and development? How did we not know? What will his life be like? How will this affect Will? What caused this? How are we going to do this?

I will be honest, and this is a little hard for me to share: I also plunged into grief. Our lives and our son suddenly looked very different from what I had been picturing and hoping for for 9 months. I know it might sound strange for me to grieve after having a baby, but I have learned it is actually pretty common among parents who are given an unexpected diagnosis after the birth of their child. While learning about the child that you have been given, you are also mourning the child you expected to have: the subconscious dreams you had for that child, the experiences you thought you would share, the life you hoped he might lead. As a friend told me a few weeks ago, most parents' dreams for their children either change or fade as they get to know their children and what dreams their children have. It's a slow, gradual, subtle process. When the nurse practitioner walked in and told me she suspected Grant might have Down Syndrome, I felt like she had just erased the entire picture of my life that I had unknowingly yet lovingly drawn over the years. I was suddenly looking at a blank canvas. I was scared, I was angry, and I felt very, very alone. The days following Grant's birth, especially the nine days he was in the NICU, were the hardest days of my life. 

But. (and you all know I think "but" is the most powerful word in literature)

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. Mr. Gahan's parents flew in from Texas so they could love on sweet Grant (and me and Mr. Gahan). 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 Mr. Gahan and words of strength and love for Grant. Mrs. Patterson and your other teachers 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. 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.

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. Mr. Gahan and I were determined that our home would be full of happiness and love. Grant deserves that. Will deserves that. We deserve that. Our lives were not over. A new life just might be beginning.

Grant stayed in the NICU for 9 days, mainly because his oxygen levels were low. Also unbeknownst to us before his birth, Grant has three holes in his heart. They were too small to detect on an ultrasound, so this news was hard to digest as well. For days, Clay and I couldn't hold him, and then we could hold him as long as we were careful of all the wires, and then on Nov. 21, they disconnected all the wires and told us we could take him home. He had a special car seat to help support his breathing, and this whole Down Syndrome landscape was before us, but he was coming home to us. We just wanted him home. And we wanted Will to finally meet his little brother. 

I honestly expected this maternity leave to be a period of great joy and thanksgiving in my life. As I told many of you, I was excited to read the entire Harry Potter series and bring our son to school to visit you all regularly. I expected to be much more visible, much more involved. As you all know, life doesn't always go as planned. Instead of bringing him in here to share him with you, I retreated and regrouped. I read everything I could about Down Syndrome, met with Grant's different doctors and therapists, and talked with other mamas who have children with Down Syndrome. I got overwhelmed. One day I asked another mother of a child with DS what I should be doing right now to help Grant. She smiled and said, "Read to him. Read as much as you can."

Yes.

I could do that. 

Together, Grant and I have read collections of essays, memoirs, bestsellers, books on faith, short story collections, and magazines. He stares up at my lips as the words of other worlds roll off my tongue, and magically we are both transported away from cardiologists and therapists and into spaces of inspiration and imagination. In this bleak midwinter, I fell back in love with reading. And as I read, I fell more and more in love with my son. We became a team during these tender moments, and I became more and more determined that I would be the best mama in the world to him. 


I also wrote. I have never felt things as deeply, been more aware of the beauty and pain around us every day, and been more inspired than I have these three months. Writing helped me process all this, and in words I found understanding and comfort. I have once again been reminded that writing can be a transformative force--for both the writer and the reader. No matter what else happens to you in life, no one can take away your voice.

I tell you all this for several reasons:

1. I want you to know me as a person, not just your teacher. I want to know you all as people, not just English students. There is more to you than what you read and write, and I am better for knowing as much of your story as you are willing to share with me and with us. I want to share who I am with you all because I think life can be hard and confusing and a lot. But I also think we can help each other through it if we are real with each other and love each other.

2. I need you to know that each and every one of you is a precious gift. Your parents love you so much. Your teachers love you so much. And I know that high school relationships can be confusing and painful sometimes, but your friends love you so much. You need to know that you are loved.

3. You need to know that loving other people, especially when they really need someone because life has been hard and dealt them a tough hand, is really, really important. Be there for people. When in doubt about what to do or how to respond, LOVE. Make it your default. Life is too hard already for us to be mean to each other.

4. I am happy to be back here. I believe more than ever in the power of reading and writing, and I adore you all. This is way more than just a job for me. I feel called and privileged to be with you every day. And as I work hard at home to help both my sons learn to read and speak, I am going to work my butt off here to help you all grow as students, thinkers, readers, and writers. Every class, every day is important. What you say and what you write and what you do MATTERS.

5. These past three months changed my life story. Part of the reason I am in front of you today is because I want to know your story--and I want to help you understand and tell it.

6. This one is personal. There are a lot of people in this world who deal with intellectual and physical challenges every day--and they did NOTHING to deserve or cause it. The reality is that Grant is going to have to work so much harder than Will to achieve the same milestones--and this is all because of a genetic fluke, an extra chromosome. I am asking you now to be cheerleaders not bullies. Help make this world a place where Grant feels accepted for who he is, where people give him opportunities to shine, where difference is celebrated not shunned, where he won't be made fun of, where we are kind to each other. No matter what you do with your one wild and precious life, you will have big and small opportunities to help or hurt people. I pray that you will choose to help.

The Known and the Unknown: An Update

Damn, there's still a lot I don't know. Always will be. Welcome to parenthood. Welcome to Down Syndrome world. Just please don't say Welcome to Holland; I'm still going to Italy and I'm taking Grant with me. I never want to read that Holland piece again.

I don't know what this new life looks like.

I don't know when Grant will speak or walk or read or potty train.

I don't know how this is going to affect Will.

I don't know what Grant's life will look like as an adult.

I don't know how we are going to pay for it all.

I don't know if Grant will be accepted by his peers, by my peers.

I don't know how this is going to affect our marriage.

I don't know how this is going to change me.

This maternity leave, yeah, it's pretty much sucked. Those dreams I had of trying out lots of new recipes and reading the entire Harry Potter series and watching A Baby Story on repeat while cuddling my little guy were replaced with doctor appointments, therapy sessions, introductions to other mamas with children with DS, and a mountain of information to understand about this extra chromosome. Throw in lots of freezing temps, the grief process, and taxes, and man, you've got a rockin' maternity leave party on your hands over here. 

BUT. 

He's smiling, friends. Grant is smiling. 

And in the midst of all this unknowing, I find myself falling in love with my son.

Snow, come on down. We've loving each other in this cozy little house of ours. We get our PJ's on and curl up under the covers and I hold little Grant in my arms and I do the one thing I know to do.

I read to him. 

Together, my son and I have read collections of essays, memoirs, bestsellers, books on faith, short story collections, and magazines. He stares up at my lips as the words of other worlds roll off my tongue, and magically we are both transported away from cardiologists and therapists and into spaces of inspiration and imagination. In this bleak midwinter, I fell back in love with reading. And as I read, I fall more and more in love with my son.

I am learning that I have a threshold. I fill up and up and up with information about DS because I want to be that mother who thoughtfully nurtures her child and gives him everything he needs to succeed, but then I feel that tipping point nearing, that place when I want to yell "Down Syndrome, why do you have to make things so much harder??" and I retreat into the comfort of another person's story.

And when I do, I bring Grant with me. He is my partner every day when I read. He holds on to my finger and listens intently and smiles. And every once in awhile, I'll stop and look down at his sweet face and think, "You and me. We're navigating this damn down syndrome world together. We'll figure it out together." 

That impulse I had at his birth to run away? Yeah, it's gone. Now I don't want to go anywhere without him. I am head over heels for this little guy and I am ready to do what it takes to help him navigate our world. We'll start by reading together every day.

This maternity leave, I totally went through the whole grief process. For me, that was my path: denial and isolation, anger, bargaining, depression, and acceptance. I have met mothers of children with DS who didn't go through this at all, and I've talked with moms who took years to find their way through these stages. And as much as it hurt sometimes, I wanted to be IN these places fully, really know these feelings in the hopes that I could confront them head on and then move on. Frederick Buechner once wrote about the "stewardship of pain." He said that moving from adolescence to adulthood involves being a good steward of pain. This pain, if we fully experience it rather than avoid it, helps us become a more full human being. I get that now. 

I am becoming okay with the fact that I don't know what the future holds. I trust that there is a bigger picture at work here and that what I need to focus on is loving the heck out of the wonderful people in my life every day. I am also starting to hope again. I believe that what's ahead of us is going to be beautiful, and it might be different beautiful and sometimes painful beautiful, but it'll be a raw beauty that maybe I wouldn't have known otherwise. And I haven't been dreaming much about the future, but when I do, I dream about doing something professionally where Grant would be able to join me, like professional photography or a smoothie cafe or a bookstore. Wouldn't that be beautiful?

I go back to work on Monday. Several kind people have asked what they can do to help. I keep saying "nothing! You have done so much already!" and that's true. But I'd like to amend my answer. 

LOVE MY SON.

Love both of my children, actually. Love ALL children. Dammit, LOVE EVERYONE. That's what you can do. When you look at my son, don't feel sorry for him or for me. We're good. I may have been a hot mess three months ago, but we're good now. Just love HIM. Help make this world a place where Grant feels accepted for who he is, where people give him opportunities to shine, where difference is celebrated not shunned, where our schools are equipped to really help our youth learn and grow, where he won't be made fun of, where bullying doesn't happen, where we are kind to each other because damn, life is hard enough on us for us to be hard to one another (like, why??).

Life can be cold and dark and hard. Let's climb the hills and enjoy the views together. And SMILE.

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.