For three days we shared meals and laughs and pool time and conversations and worries and evaluations and encouragement. Our kids played while grandmas and aunts distracted the rambunctious ones and then rocked the tired ones. We swapped remember when stories and gushed over how much all the kids have grown. We snapped photos and said we couldn’t wait for next year.
This reunion, hosted as The Focus Foundation‘s 49ers Conference, has become a sanctuary for me. This gathering of experts and families all interconnected by the three extra chromosomes our boys share. A place where the doctors for once know more than I do about his disorder. The place where I watch my ten month old baby adore her brother’s 49er friends in the same way she is smitten with Reed. Where I watch Luke embody the differences don’t matter mindset. Where we benefit from the collected wisdom and experience and love of other families. The place where I see Reed, full of confidence and happiness, connect so easily with other kids. Simply, it’s the one time a year we are not the odd family out. We belong.
I’ll admit that first family reunion three years ago was rough. I didn’t want to be there. I didn’t want to have a son like this. I didn’t want to meet older boys with the same disorder and feel like I was staring down my future. The second reunion was slightly less terrible but still incredibly overwhelming. I had accepted our new normal but my questions and worries still clung.
But then this third year just felt like coming home. Instead of being sad that we need to be there, I find joy in Reed’s exceptionality leading us on this journey. And I surprise myself. As hard as I’ve fought and pushed against this story — the one I didn’t pick, the one I never thought I could have survived in — now this feels like family? Like coming home? And I just laugh giddy because it feels like a triumph. To be able to say not only do I accept this story, I cherish it.
Where — or maybe more aptly — what is home?
For four years, ten months, and eighteen days, I’ve been slow to come around to Lancaster County, PA, being home, with her brilliant, rolling green pastures and juxtaposed old order and emergent new.
First, the house on Ashford, where three learned to be a new kind of family. Then two cozy, maybe too small, apartments where three became four, where sons became brothers. And then a tall, square, minty green house on the most impossibly narrow city street where 100 years of old had been transformed into new and lovely, where from the smallest bedroom corner of the house, we could watch fireworks drip over the city. And finally, then, a 1950s original vintage kitchen, with too worn carpet, and a warm, sunny, soft green backyard. This house where four welcomed the fifth and we grew more. I can close my eyes — because it was just yesterday — and see my boys playing, laughing, running haphazardly around that suburban backyard, see my baby sway all full of joy in her bucket swing with just enough sunlight to hint at the strawberry in her hair.
Lancaster, where your summers aren’t hot or sticky enough, I’ve been slow to name you home. Because home to me could only ever be that place where I rooted for 15 years. I’ve resisted your too cold, too white, sometimes too bleak winters. Your springs too pungent with manure smell. Your requirement that friendships start all new, all shiny, kinda scratchy, like those new, unlaundered pants, not quite worn in and comfortable, like the kind of comfortable two decades of living can bring. Lancaster, a backdrop for me, to real grief, complicated by miles and miles of distance. A place in which I was a stranger to those who had not met me and a stranger even really to myself, my new self, with my newly diagnosed son, my newly growing family.
But as we’ve packed, as we’ve shared meals and hugs and promises of visits, as we’ve quietly said goodbye, I’ve realized Lancaster has been our home. For four years,ten months, and eighteen days, Lancaster has given us deep green summers, and piles of snow for my boys to discover the thrill of sledding, and some of the freshest produce on God’s green earth, and yes even friendships that have become family. People, once new, now familiar like your favorite soft, worn leather reading chair, helping me know them, know myself, know that my family was loved. Helping to read, to witness our story and us theirs. Lancaster, you have homed us. And while you may not look or feel or smell like my first home, you have run gently a quiet, deep stream of gratitude through my heart. Gratitude for who you’ve helped me see that I am. Gratitude for how you’ve embraced the messiness and complexities of us learning to be a special needs family. Gratitude for how you’ve expanded us, taught us how to be us, new and differently and all over again.
Happy 3rd birthday, buddy! This morning, as we sat around the breakfast table, we shared your birthday story. Your usually dancing, hoppin’, laughing self sat scarce breath and wide-eyed still as we recounted each detail of April 28, 2013. I’m not sure what you were thinking exactly but I know you were trying to understand it all, soak it in, and hear the beautiful story of how you became our second-born.
That early morning Sunday you were delivered, a good bit of dark hair circling your head, and all was well. And given our history, we exhaled thanks and peace. There’s not a memory with you yet that isn’t colored bright by your joy. (Mamaw pegged you right through when she nicknamed you joy to the world). Your smile, your laugh, your enthusiasm, all spread wide. God knows we needed your light and your joy in this space, in this place, in our family. Somedays I try to soak you and that joy right up into my heart.
These days my favorite thing with you is to listen in on the hour of singing, laughing, reading to yourself, and trying out new “yoda” (yoga) poses that ensues after you’ve gone to bed. It’s you uninterrupted, you not quite ready for the day to end. And who would want a day filled with so much joy to end?
You fill these days conspiring with your brother, building towers, reading books, singing as loud as you possibly can, running races, filling cups, skipping dinner, naming preschool friends, being big brother, and reciting lines from your favorite read (The Book with No Pictures).
We love you, buddy!! Happy birthday to the happiest of three year olds.
Happy update! This post has been published on The Mighty! Check it out and give it some love @ These Words From a Genetic Counselor Changed the Way I See My Son’s Apraxia Diagnosis.
New grief needs compassion and tenderness and space to breathe, when wave after wave overwhelms and leaves you so tender and raw. Sometimes you need someone to tell you another story just to keep your head above water
When Reed was first diagnosed, some of the most healing words spoken to me were from a stranger–a genetic counselor tasked with talking to us over the phone about the life-altering condition Reed had. She told me the story I didn’t know yet: Reed’s diagnosis didn’t define him; it simply explained some things about him. When all I could see was what felt like a death sentence, those words gave my heaving soul a different story to tell.
And that story became my mantra every time my heart tried to throw up confusion and guilt and sadness and anger — all those grief-torn emotions. Doesn’t define him. Just explains some things about him. Doesn’t define. Just explains. Not defining. Just illuminating.
But five years has sanded off the ragged splintering grief and given me a new story.
His diagnosis does define him, just in a way that, at first, I couldn’t understand without waves of grief crashing down. Now I can acknowledge straight forward that there’s not one facet of his existence that those three extra chromosomes don’t touch. I don’t know–and never will–a Reed without hypotonia and apraxia. The way he walks, the way he talks, the way he holds his head cocked to the left, the way his frustration sparks fierce, and just as quickly dissipates, the way his anxiety can overwhelm him–all of those are the sum of his multiplied genes, the most prominent qualities others notice about him first. His genetic disorder is one of the most profound, influencing circumstances in his life, defining much of who he is and what he does.
But here’s where the story takes a new direction for me: There’s more to know than what defines him. His diagnosis can’t account for how he loves to laugh at his own wicked sense of humor. How he is gentle and sweet and loves holding hands and cuddling up on the couch. How he adores dogs. How he could eat bread all.day.long. How he loves to run. How he observes and he asks questions about everything. How he’s a genius at hidden picture puzzles. How he loves to slide and throw rocks and blow bubbles and write the letter “e” and play hide-n-seek. How he loves his baby sister.
With Reed, we live both within the constraints of his disorder and yet beyond those borders, because there’s much more to know about him.
I’ll always be thankful for what that genetic counselor originally told me because her words probably saved my life a million times that first year. But sometimes as our grief changes, we need a new story, one that walks us through the present season, bringing new strength and new joy.
All this life has me wearied. All this anger and frustration and yelling and eating that which doesn’t satisfy – it’s left me so over it all. I’m tired of all the brokenness. All the things always running out. I’m tired of all my brokenness and all my always running out. Sin sick as some seasoned saints might say. And even though the Christmas lights sparkle and twinkle, making artificial merriment, all the glow but no real warmth, I don’t feel very festive. This doesn’t feel very much like Christmas. How will I move from this weariness to Christmas joy? But as I read ancient Isaiah, those oh so familiar messiah verses pointing us to the Prince child born for Peace, I read through the surrounding words – words of darkness and destruction and weariness. The familiar, rejoicing prophecy words behold the virgin shall conceive and call his name Immanuel and unto us a child is born unto us a son is given of his peace there shall be no end are enmeshed with war, trembling, shaking, fierce anger, devouring, without compassion. In this world, light shines brightest in the dark. Light a sharp contrast to this weary and wearying world. But maybe this weariness weighing heavy makes the best anticipation for his coming, for his Christmas birth. What better place to be right now, right here, than feeling the fullness of this world’s – of my – brokenness? No better vantage point to experience God with Us. Emmanuel.
Our second September baby came just when expected! Exactly six days before her actual due date, Elisabeth Ansley arrived at 11:42 a.m. on Friday, September 4th, weighing 8 pounds 8 ounces and measuring 20 1/4″ long.
While my last two births delivered complications, my third pregnancy was quite uncomplicated. Though of all my pregnancies this one held the most surprises: discovering I was expecting back in January was unexpected, learning that Reed and Luke would be big brothers to a little sister was delightfully surprising, and having to wait until the scheduled c-section date to meet her was unlike either of my previous pregnancies.
Just as planned on September 4th, Ben and I arrived at the hospital at 8:30 a.m. where I was quickly checked in and whisked back to pre-op. By 11 a.m. we were walking back to the operating room and 42 minutes later, with Ben holding my hand the entire time, my obstetrician delivered the loudest, most beautiful blonde haired baby girl I’d ever seen and I couldn’t stop smiling. That little girl wailed and wailed and wailed, at the top of her tiny lungs, as they cleaned her up and measured her and as her daddy cut her umbilical cord. But the moment they finally placed her on my chest, she snuggled in and quieted down, as if she knew she was at home.
Her brothers are incredibly sweet with her, always wanting to know where she is and then giving her soft, sweet kisses on her head. Her daddy and I are enjoying the fleeting moments of her newborn days, as we settle into the joy (and chaos) of being a family of five!
Five years ago we were sitting in a hospital room, knowing that the day would stretch long as we waited for you. And just before 3 a.m. on September 2nd, you entered the world a tiny, red-headed version of your daddy.
And yet you are also this wonderfully intricate mash-up of me and your daddy. His looks. My freckles. His love for movies. My love to be on the go. His innate sense of direction.My quick-trigger frustration. His intensely observant nature. My blue eyes. His independence.
Most importantly, though, you’re you. You are so distinctly you, in a way that I can’t really wrap into words. Your generous, kind heart is such a joy to see. And your silly, always looking to make others laugh nature, brings light to so many situations. So, today, we get to say happy fifth birthday to you, a kind, generous soul that we have the privilege of raising! I’m amazed as I write the word “fifth,” just marveling at how you’ve grown and changed and blossomed in five years. I wish you could see how much you’ve grown in these five years; it’s quite astounding!
Your language has grown so much that your teacher can’t even keep an accurate, up-to-date list of all the new words, phrases and sentences you can say. You easily count from one to five, when even just a couple of months ago 1, 2, 3 was difficult. And you’ve started singing; you’ve always loved music and now you’re singing along with some of your favorites (like Let it Go and You Are My Sunshine). Your feet are growing so rapidly that we’ve had to size up for the second time this summer. Those bigger shoes help you run around with your brother.
We continue to pray that God will knit our hearts closer together as a family, that we will know how to shepherd your wonderfully generous heart, and that this next year will be a wonderful one for you.
Love you buddy,
Mama, Daddy, & Luke