My corn silk haired baby, you have been such a joy this year! You are a mile marker to the beginning of us — our family — all new. Long nights and tired days, yes. But still joy filled because you’re here. And sometimes that joy seems to rub out a little bit of the sleepy.
I finally feel some confidence, just a little cocktail of hey-I-might-know-what-I’m-doing with this baby thing, occasionally, every once in awhile. Until I don’t and then we just figure it out all over again. We’re bursting all antsy-like, watching you do all those things babies do — crawl, investigate stairs, crinkle-nose smile at us from across the room, stand, clap, discover new tastes and textures, splash happy in the pool, call us Mama and Daddy, laughingly giggle when we find just the right tickle spot – witnessing precisely, uniquely who God has made you to be.
My sweet, observant, gonna wait until you’ve got it figured out just so, baby girl. You are loved, loved, loved. You are a delight. Happiest of birthdays, Ansley Goose! Love, Mama.
Reed, when I look at these pictures — all snapped moments, like a still shot calendar — I see a loyal, goofy, loving boy. You became a big brother all over again and won my heart with how kind and tender and sweet you are with Ansley Goose. You’ve made me laugh with your silly sweet faces that you pull out at a moment’s notice. You’ve shown us how much you love animals and art, and I really do long for the day you can have a puppy all your own. You’ve impressively weathered not just miles and miles of road trips this summer, you’ve tenaciously worked to adjust as our family uprooted from schools and friends and a church we loved to start a new adventure. You’ve hung in there with us and have simply blossomed into this beautifully handsome, loving boy that we have the privilege to call our oldest son. We love you, buddy! Happiest of birthdays to my silly, sweet Reed.
Monday we met your teachers and you got to explore your classroom. We saw the gym and the cafeteria and the library — all the neat places that will help you learn and grow.
Tuesday we met your team — the teachers and therapists and principal and admin assistant and psychologist — who are already working so hard to support you in this new adventure of kindergarten. I sat with them at the table, talking about you, your strengths, your challenges, our hopes, our concerns. Bud, you have a good village (and boy do I mean village — at least ten people around that table!). Now I know we’re in the right place, with the right people.
And then there’s tomorrow. Big, deep breath for my mama self. The big, burning question leading up to this day is have we done enough? Have we helped you enough so that tomorrow you feel confident and secure in who God has made you? I think of all the things we have said, could have said, might have done, did do. And all I can do is remind myself to breathe.
So, I breathed in the smell of your slightly curling strawberry hair tonight and in an instant I’m back in that operating room, arms shaking, listening to a nurse gleefully announce that my baby had red hair! Then I see your toothy, baby grin smiling back at me from the back of the blue truck right after your first haircut. And in another moment, I remember how your first words were actually first signs — more and eat and ball and dog. I see you all crinkle nosed, face-to-face snuggling (which Grammy swears was really a Reed-style interrogation) with tiny newborn Luke. And the tears come quick and ready as the reel of your first steps across that black and white tile kitchen plays in my mind. And oh goodness, the first time I heard you call your baby sister Ansley Goose, the nickname you made up for her, I prayed that it would stick. I think I’ll be up all night with these memories.
I am so proud of you, Reed. So proud of the person you are and the one you’re becoming. I’m proud to be your mama. I know that this year will be both a challenge and a blessing. Daddy, me, Luke, Ansley — we’re all here cheering you on. We’ll just take it one day at a time. Just like we’ve always done.
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.