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.