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.
Love like I’m not scared Give when it’s not fair Live life for another Take time for a brother
I watch you haphazardly run-trip down the hall, veer unsteady into your brother’s room. His sleep hasn’t quite worn off yet as you climb into the bed, belly down, eye to eye. “Reed? Up?” He peeks one
eye over at you, arm slung up and over his forehead, covered in thick, red curls. His lips eek out a slow smile. And then you’re off. Both of you, to play, to steal each other’s food, to hug, to run races, to argue and fight over the one toy while a billion lay ignored. And this brotherhood unfolds, dances a little crazily through my living room and kitchen, spilling out the back door. Am I watching the first stitches of a forever friendship?
I’ve written plenty already about my-not-yet-enough mama-ing of you two. But today, today, I take the backseat. And I watch the two of you, musing over what one will teach the other. So different and yet knit from the same substance.
Today I pray that you will teach each other love that is unafraid. Unassuming generosity. Life that breathes life. An ease of pace that openly invites others. A burning fight inside for those who are unheard, unloved, unneeded. A voice that insists freedom is the best gift. And an abiding faith that anchors your soul.
Fight for the weak ones Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on You…
Being a mother is, to me, a mostly impossible task. I’m being asked to be who I am not yet.
I didn’t often feel the sting of failure in my mostly sheltered and protected middle-class American upbringing. Until those nurses placed that tiny, tiny red-headed baby into my trembling arms. And since that day, I’ve learned the humility of failing more times than I can recount, both in big and small ways.
And through those failings I’ve seen grace upon grace upon grace. Because for some reason, those two little boys keep loving me. Keep calling me mama and mom and mommy. For some reason, despite all my lacking as mama, they keep asking for my hugs, my off-key singing, my silly games. And perhaps most curious of all, despite these failings, I keep love being mama.
Even though. I am not yet patient enough. Or kind enough. Or brave enough. Nor do I know enough. Think enough. Feel enough. Be enough. I am not yet who I ought to be.
So I look to those who have mama’d before me and around me. I search for their reassurance that all these cracks aren’t disassembling me. They are breaking open deep wells of grace and light. They are all running together in a masterful design that is not too late in coming.
Maybe this plan of making parents out of not-yets is purposeful. A great mysterious paradox where the child is both learner and teacher. Where the mama is both not enough and just enough. So that even though I am not yet who I ought to be, I am becoming.
It seems that I’m running behind in many ways these days, and wishing you this happy second birthday is no exception. You officially entered our family 730 days ago, and these hundreds upon hundreds of days have held much joy, much laughter, and much growth.
Your smile with that almost visible dimple is the look of joy. The tone of joy erupts when you exclaim “I did it, Mama! I did it!” to any numerous daily achievements. Those little arms draped around my shoulders, your head laying flush against my shoulder — that hug feels like joy. And I know you must taste joy every time you beg for just one more berry, your favorite food.
Your laugh, that one that sounds like Boo from Monster’s Inc. The one that your daddy recorded and uses as a ring-tone. That laugh that captures the sheer incredibleness of childhood. That laugh you laugh just to see if you can make other people laugh.
Did you know that you’ve tripled in size since your birth? You’re growing tall and solid and strong. So strong, in fact, that you often insist on pulling your older and heavier by ten pounds brother around the neighborhood in your beloved wagon. I call you my work horse because you always need a task, a mission, a focus to drive you through your day. You’ve grown from a soft, warm, tiny baby into a walking, running, talking, rough-and-tumble boy. This growing is so bittersweet for your mama but inevitable I know.
Right now your constant question is “Home?” Sometimes not even fully out of the driveway, you’ll pipe up from the back seat: “Home?” as if there’s no place you’d rather be than home. Home where me, daddy, and Reed are. Home, where you play and run and stomp and yell and eat and cry and cuddle and sing and love. I pray that you have the soul of an adventurer but a heart that will always find its way home.
You are dearly loved, sweet boy!
Happy fourth birthday! Even though this is year four of your journey, it’s also been a year of firsts! Your first year of preschool, your first steps, your first time as a big brother.
At four years old, you’re favorite question is “Where we going?” You ask it when we’re putting on shoes, when we’re riding in the van, when you’re bored at home and want to go out, or just when someone walks from one room to the next. It’s your question du jour. And I wish I could capture in words the sound, the intonation, the upward tilt of your voice when that question comes. I hope it’ll forever be imprinted in my mind just the way you say it now.
Unquestionably, you look like your daddy, but you also think like him. When daddy and I first got married, I told him that under no circumstances should he ever EVER listen to me if I gave him directions somewhere; no matter how insistent I sounded or how angry I got that he wasn’t following my directions, he was not to listen to my misguided navigation attempts! Your mama is hopeless when it comes to good directions, but your daddy, he’s a human GPS. So every time from the van’s backseat that we hear “Where we going?”, I smile at the 29 years younger version of your daddy. Inevitably, you’ll follow-up my answer with “Where?”, searching for the right word to continue our conversation. You want, you need more details. And so sometimes I navigate our drives out loud, while pretty sure you’re downloading all this information so that one day you can navigate just as good as Daddy. And one day, I’ll tell you too to ignore any road directions I ever give you.
Sometimes, buddy, I wonder where we’re going, too. Where will your journey take us? What will it look like, feel like, be like? I can’t look into the future. But I can look back at the last four years that have brought us to right here, right now and I’m confident that we’re going somewhere that only you can take us. Mostly, I’m confident in the One who created you and I celebrate His creativity in making you YOU.
We love you buddy!!