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.
Sitting at the kitchen table of my not-quite-unpacked kitchen, just a couple scant weeks since we’d uprooted our little family and moved 600 miles north, I watched Ben’s expression grow more focused and intense as he scribbled down a few notes from the caller on the other end. What I didn’t know in that exact moment was that our pediatrician had just delivered “the” news about Reed’s diagnosis. Ironically, when we did the genetic testing, our pediatrician did it as a measure of “let’s cross this off our list” because she — and we — didn’t expect for anything to turn up from these tests. That was dinner time.
Sitting on the futon in our dimly lit basement, we began calling family, putting an identity to all the questions and uncertainties we’d faced with Reed’s development up to that point. I remember feeling relieved to finally know there was a reason for all of this but dismayed at the complexity and rarity of his disorder. In some ways I couldn’t reconcile the diagnosis with the real, living little boy that slept upstairs in our new house. That was bed time.
Dinner and bed times continued to accumulate, day after day, and the doctor’s appointments and therapy evaluation list grew long and longer yet. Strangers began showing up at my house, sent by the Early Intervention program, to work with Reed and help us help his development. Mandy. Catherine. Trish. Rebecca. Angie. Patty. Sue. Amber. Then, Geneticist. Endocrinologist. Opthamolgist. Pulmonlogist. Immunologist. Cardiologist. An intrusion into what was theoretically my normal life — at least at first. I really can attest that the first stage of grief is denial. An extrovert my whole life and all I wanted was to retreat, retreat, retreat behind the closed doors of my home and heart. The thought of a support group — where I imagined everyone stood around feeling sorry for themselves — made me nauseous.
But, you know, a pity party can only last for so long. And I began to realize that those strangers, those ones who showed up at my door week after week to help my precious son, they would become friends. And those medical specialists were our allies as we sought understanding and help. And I began to understand how much research and science and community support has brought us. How much we have to be thankful for because this could have been so much harder, so much more isolating.
This week I’m particularly thankful for an organization introduced to us by the very first genetic counselor we spoke to after the diagnosis: Unique. While based in the UK, this international organization provides up-to-date research and information on rare chromosome disorders, like the one Reed has. And this week Unique is celebrating Rare Chromosome Awareness week. This week will you join us in celebrating Reed and his own unique-ness and in honoring an organization that so greatly benefits our family?
To learn more about this organization, click on this link.
The warm, almost-too-hot water, swirled around my feet, relieving some of the pregnancy-induced swelling. The electronically controlled rollers kneaded up and down my fraught back, feeling swayed from the growing pull on my belly. The pedicurist’s hands expertly kneaded out the tension in my calf muscles, while the lady next to me made small talk about her own daughter who’s expecting a baby at the end of October. I love that my growing belly makes small talk with strangers easy. After my pedicure-neighbor asked about my due date, she replied with frank astonishment: “Wow, you’re so much bigger than my daughter!” Did I mention that I’m a full six weeks further along than her daughter? And this is my third pregnancy? And let’s not forget, I’m a tad hormonal these days? Doesn’t everyone know the “What You Should Never Say to Pregnant Ladies” rules?
And while her comment probably registered a three on an irritation scale of ten, there is another just-as-oft used comment that explodes off that scale. Really, it always makes me feel a little sick to my heart, like a lead rock has been dropped into the bottom of my soft, empty well, absorbing all the impact of this oft repeated pregnancy platitude: “We really don’t care if we’re having a boy or a girl, as long as they’re healthy.” I used that phrase before I had Reed, even while pregnant with him, months before we would know how altered our lives had become by this little baby. After all, it seemed harmless and true. Everybody wants healthy. I mean, that’s the base line, right? If nothing else (or maybe even if everything else) goes your way pregnancy-wise, the least you can ask for is a healthy baby.
But what happens when I breathe that please-just-be-healthy mantra looking into the sweet face of my almost five year old who is not by any standard definitions robustly healthy? How can I pray that this little girl growing inside of me “just be healthy,” when that seems to undervalue, undermine, and invalidate her oldest brother’s very being?
How do I answer him the day he asks, “Why wasn’t your just-be-healthy prayer answered for me, Mama?” I scrape the bottom of my heart-well, searching for the right words that haven’t yet come.
Perhaps, though, what’s most troublesome for me, sitting on the opposite shore of just-be-healthy, is the ultimatum this unknowing comment casually throws into the ocean. What’s left lingering at the end of “as long as they’re healthy”?
Treading these depths, raising “not healthy,” looking long past today and into life even a little farther out to sea, what’s peeking on the horizon of my ultimatum? If i can’t have “healthy,” then I refuse joy? If he can’t just-be-healthy, then I’m succumbing to bitterness? If he just isn’t healthy, then I shut out hope?
Or was there a great ocean of learning that I was about to uncover in the shattering of my just-healthy-please expectations? Those empty words wishing “health” mirrored my heart that needs to be made just that. Healthy.