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
Dear Baby Girl,
The other day, on Facebook, I wrote a status that proclaimed the end is in sight. And in some ways, I’m right. Our shared body experience will come to its culmination in just two brief weeks. You’ve been safely cocooned inside of me while my body works around the clock to sustain you. You’ve reminded me of your constant presence with your tiny yet profound movements that sometimes we can even see from the outside and often times your daddy can feel with his palm spread across my abdomen. As you grow a little bigger and the skin of my belly stretches a little thinner, your movements constrain a bit more. My painfully swollen feet and joints urge me to count down to that hour when you’ll be delivered from me, and yet, I know I’ll miss this intimate connection we share. As a family, I see the image of two little boys playing trains together dissolve into a picture that includes you (even though I can’t quite picture your face just yet), their little sister, watching and eventually joining in their play. This dissolving reminds me that you will birth us into a family of five.
But like so many other endings, we’re really about to begin again. We’ll learn again what it’s like to stumble through long nights followed by longer, more tired days. We’ll learn again the true smallness of a newborn and the joy that comes from holding, nurturing a brand new life. We’ll learn again what it means for our hearts to grow bigger because there’s one more person to share love with, there’s one more little, tiny person who’s captivating our hearts. As both boys have done, you’ll teach us, in your own way, how to be a mama and a daddy all over again. And then in at least one significant way, we’re beginning totally new. As Dr. Seuss tells it, there’ll never be another you, no, not even one. We’ll be learning you new. These realizations remind me of the privilege we have to begin all these things again.
We have been praying for you in these days leading up to your birthday. And our earnest prayer for you, just like I pray for your brothers, is that you will be full of grace. That you will bend your life around the truth of His mighty love. We pray in earnest that you will be kind, gracious, and content, embracing just who God has made you to be. Knowing the One who has loved you most, we’ve loved you from the beginning.
Mama, Daddy, Reed & Luke
What do you do when you’re stuck between two goods, like say protecting your first born or advocating for him, and to do one means you do the other less well? I’m standing at this crossroads but know I can’t stay much longer.
August marks the fourth anniversary of Reed’s diagnosis. With that first news, Ben and I sat on our basement futon, and decided to let Reed’s story really be his own, to give him full ownership and authorship of the story he chooses to tell. And as such, we decided to not publicly disclose his precise diagnosis. Four years ago I wrote these words to explain why naming his disorder was something I couldn’t do: The details are too new, the news still too raw, to share more specifics. And a few weeks later I solidified my stance:
The diagnosis is rare – one in a hundred thousand rare. Good information scant. And anyone with Google and the right search word could dissect every aspect of his syndrome. And him. This baby will tumble into a boy and that boy will lengthen into a teenager and then that young adult will transfigure into a man. Shouldn’t he decide who to tell. How much to offer. When to time it?
We look at the name given to his syndrome, nothing more than a few letters and numbers strung together, only meant to help experts identify his genetic structure. No meaningful name to write. And so many ways for this unique make-up to express itself in him. An unfinished story that God is unfolding.
And we want to share this story, but in a way that honors Reed for the person he is and the one he will become. So we leave the name unwritten right now. Leave the picture a little unpainted as we wait to understand who he is.
Those are words written as a bandage over a mama’s bruised heart, one that wanted to maintain control over people’s reactions and responses to something so out of the ordinary. Polite words that really meant don’t you dare misjudge my boy. Camouflaged words that let me maintain an illusory sense of control. My kid, my choice. Don’t question me, ok?
All these months later, I’ve become practiced at answering “So, what is his diagnosis?” I’d blow through that question with a simple “it’s just a string of letters and numbers” and then explain he has hypotonia and apraxia. This seemed to satisfy most people who asked and it became a comfortable and familiar answer.
But. My kid needs more than my defensive protection and my comfortable, familiar answers. He needs advocates, and we’ve found important allies in The Focus Foundation, a non-profit, research group whose mission is “dedicated to helping children and families affected by X & Y variations,” a category that Reed’s diagnosis falls under. To be precise, Reed has three more chromosomes than the typical person, and boys with his diagnosis are nicknamed 49ers. The scientific label for his disorder is 49xxxxy.
I realize that most people have not been holding their breath waiting for this less than grand announcement, and as my Uncle Joel would remind me, no one thinks about any of us nearly as much as we think they might. But, I actually hope that you’ll think of our family and kiddos like Reed more now because I have found that advocacy and the important research done through the Focus Foundation are vital for Reed. But if I’m intent on warding off possible but imaginary ill-willed people, I can never be the help to my own family and others like us if I’m unwilling to share our family’s story.
I still believe, in part, the words I wrote four years ago. This is Reed’s story. But I’ve come to understand that we can honor him by being the voice to his story right now. Really his story is just as much our family’s story, and that story is only as powerful as my willingness to use it for greater good.
If you’ve ever wondered how you can help our family, I’d direct you to this, a page that tells you how you can support The Focus Foundation. The easiest way to contribute is by
- Clicking this link: https://smile.amazon.com/
- Searching for and selecting “The Focus Foundation Inc” as your charity of choice
- Then when you shop through https://smile.amazon.com, Amazon donates 0.5% of the price of your eligible purchases to The Focus Foundation.
This kind of financial support enables the foundation to provide, among other things, scholarships for families (of which we’ve been beneficiaries) to attend the yearly 49ers conference, an amazing opportunity to meet with other families affected by this disability, learn about current research for this disorder and its related challenges, and meet with specialists who study this group of affected boys.
To live in a place and in a time where this level of research and help is possible is astounding. It really is daily grace to me. I’m excited to be coming clean with the whole world so that children like Reed, supported by The Focus Foundation, will succeed beyond our wildest imaginings.