For World Down Syndrome Day The Washington Post published my perspective on how it feels to be a parent of a child with Down syndrome, while reading the public debates around the topic of abortion and prenatal DS testing.
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A couple of weeks ago I had the chance to review the new movie Wonder over at Christianity Today. I had loved reading the book with my kids, and was so excited to take my older boys to see it.
I wasn't disappointed. As the mom of a kid with special needs, I connected on a deep level, but walked away most proud that my kids were exposed to something so beautiful.
Here's my review: Wonder Reveals the Face of True Human Strength.
Happy World Down Syndrome Day from Ace! Today I have the honor of sharing what I wrote for Aleteia's magazine about what World Down Syndrome Day means to me, almost one year after our little guy's birth.
If I could write . . . [to] my pregnant self, the woman at the kitchen table with her laptop open, the woman who feared she was walking into a world of loss and sorrow, this is what I would say to her:
Sweet girl, take a deep breath. You just won the lottery.
This is not what you planned for and those are the best of all the adventures.
I would tell her that her older sons are capable of tenderness she’s never seen before. I’d tell her that loving another person is always a risk, whether or not that person has a disability. I’d tell her about the day I put three-month old Ace down for a nap and my oldest son asked me to pray “that Ace’s Down syndrome won’t hurt him.”
I’d tell her how when Ace cries my five-year-old half shouts/half sings the song we wrote together: “I am Acey! I am Acey! I’m a sweet little boy!” I’d tell her how, despite the chaos of all of it, as soon as Ace hears his brother’s voice he always stops crying, just so he can listen.
I’d tell her that there was never a different story. The one she had in her head, the one with three typically developing sons all growing up strong and handsome and successful with easy lives.
This was the real story all along, I’d tell her. The true story of our family. Your older sons were created with this plan already in motion. And it’s perfect this way, I’d say. Just watch and see . . .
I’d tell her it’s worth it, all of the risks, all the fears, all the therapies and challenges and the uncertainty of the future. It’s worth it because love is bigger and wilder and more spectacular than she can imagine.
Read the rest over at For Her.
“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.”
Each year on March 21 the world celebrates the lives of those who carry an extra 21st chromosome. I'm inviting you to celebrate Ace and all the children and adults in this world living with Down syndrome who deserve to know they are loved, wanted, and have something important to contribute.
On Monday I'll be wearing my #Aceface is my friend shirt. I'd love for you to join me!
If you don't have one yet, you can still purchase! (There are so many styles and sizes to choose from...kids sizes too!) You may not receive it in time for World Down Syndrome Day, but all proceeds from #Aceface tees will go to Ruby’s Rainbow, one of my new favorite charities that provides scholarships to help young people with DS achieve higher education and attend college. Ruby's Rainbow is also challenging us to take their 3/21 pledge. Give $21 to Ruby's Rainbow and then challenge three of your friends to do the same.
And then spend a moment with this beautiful video in honor of World Down Syndrome Day. So grateful you're with me and Ace in this journey, friends.
You can order your shirts here!
Several months ago of some things I wrote about some things I had learned in my then six or so months of being the mom of a child with special needs.
Today that piece (revised and with some additional thoughts) is over at Today's Christian Woman. You'd usually need a subscription to read the articles at TCW, but you're special to me, so I'm giving you a top-secret link. Feel free to share. :)
You are a delight. We say that to Ace, the baby who seems remarkably gifted at sweetness. I say it while I tickle him or while he giggles to my lame-mom attempts at singing our way through the afternoon. I say it to my older boys when they’re snuggling close, their hair sometimes the scent of the dreamcicle ice cream pops of my childhood summers.
You are a delight. It’s a word that registers a moment of bliss, a surge of joy, a renewal of wonder. To delight to is stop the monotonous motion of daily routines, to be present, to receive the dearness of the moment.
Delight. That’s my word for 2016. I want to delight in my children. I want to delight in this life I have. I want to believe in God’s delight in us. I want to move slowly enough through my days that I cannot help but stop for the joy of it all. I want to read because I love to read. I want to write out of a sense of emotional health, not guilt, not obligation.
. . .
So what hinders delight? I’ve been asking myself that question for the past month while I’ve mulled over this word. What stands between the drudgery of regular life and the joy of the present moment?
My own mind: My obligations. The directions I’m pulled in. The guilt I carry of not doing enough for enough people.
And without delight, I am not the writer I want to be. To delight is to find a new way toward creativity.
. . .
I’ve been waiting to “figure out” this whole three kids thing. I’ve been waiting to figure out what it looks like to raise a little boy with special needs. I’ve been waiting for life to calm down so I can go back to writing like I used to.
And readers, I’ve come to a realization: I can’t write like I used to. Not with the same speed, not with the same frequency. My older kids may be in school, but they demand a different level of emotional attention. There are challenges that require a mom who is present, who is intentional with our time after school.
My baby is not in school, but his therapy schedule is surprisingly intense. And Ace not only demands constant nursing. (He still won’t take a bottle! Ahhh!), but he also struggles in things that were easier for my older babies. He takes a lot longer to eat. He naps for a smaller amount of time. He has exercises he's supposed to do every day! I need to be intentional in the time I give to him.
I’m learning how to be Ace’s mom. And learning takes time.
Delight in this stage of life looks like a different kind of freedom. I need to let go of my old expectations. I need to embrace some new ones.
. . .
I’ve decided to stop blogging.
This has been a long time coming. I’ve backed off more and more. I’ve gone longer and longer between posts. I stopped apologizing for those long breaks. But I’ve still felt an obligation to this blog, a loud voice in my head telling me that I need to do more, that I need to use my time to get something up on the screen.
And I’ve decided to permanently shush the blog-obligation voice. I’ve decided to take some time to let myself be inspired again, to let myself play with my kids without a guilty feeling that I should be writing.
I started blogging because I was inspired. I was reading things I was deeply excited about. I was full of ideas. I want to be there again. And I really believe that in order to get back to that head space, I need a little delight. I need fun books to read. I need notebooks full of thoughts. I need space to have some new ideas.
I’m going to keep this space open. I am not closing this blog. I’m planning to publish pieces from time to time in other places. And when I do, I’ll share links to them here. I’ll still be posting on my accounts. You can find me in all my places.
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I promise I will not flood your inbox. But if you’d like to keep up with what I’m writing, I’ll send you an email every time I post something up on the webs. That way you won’t have to keep coming here to check in, you’ll get an email from me instead.
The season of constant blogging was such a sweet one for me. I’m so grateful for you all for reading and commenting and supporting the work I’ve done in this little corner of the internet. The reality is that the blogging life is just not sustainable with my right now life. And I’m learning to be more and more at peace with that.
So I’ll be off practicing delight. Relearning what it looks like to choose books for fun, to use time to play, to write things that make me giddy. And I hope you’ll look for ways to choose delight as well.
Thanks for the freedom. I’m grateful for you all and I promise to stay close by.
Cultivate was my word for 2015, a year that was probably the most challenging of my life. I didn’t write about that word, Cultivate, all that much. Not because I didn’t feel inspired by the power of its meaning, but because I didn’t really have the energy to think about what I was cultivating. In all honesty, last year was not about the bigger picture of bringing forth good things. It was a smaller season of life. It was a season of receiving. The good, quiet, painful work of receiving.
Last January, , I chose that word cultivate, thinking already of what I would do once I had worked through the news of my unborn child’s diagnosis. What would come from this? What would I make of this new thing?
I didn’t really make anything this past year. I simply did what I needed to do. I slowed down.
In the last eight weeks of my pregnancy, my amniotic fluid hovered around the danger zone, and week after week I drove myself across town to have my belly pressed and rubbed with instruments, all checking to make sure Ace was safe in there. My growing bump slowed its expansion. I worried what would be found when the tape measurer wrapped around my middle.
And over and over there was no big answer to those challenges. Drink water, they’d say. Rest.
Sometimes the work of cultivating gets halted into those first stages: The hard work you’re asked to do looks more like receiving: Put your feet up, mom of two wild boys. Ask your friends to watch them. Take naps. Stop writing so much. Let Florence bring you dinner, again. Receive, receive, receive.
Chris and I have been watching A&E’s six-part series , which follows seven young people with Down syndrome living in LA. It’s been a joy to watch their lives and personalities, to see their challenges and gifts. It’s a sweet, kind-hearted show. And it’s helping me make peace with who Ace may be as a young man. It’s helping me make space for that part of his story, when he isn’t a child, when he falls in love, or tries to find a job, or learns how to shop and cook for himself.
I keep remembering that receiving is a process. I need to continue, with each step of Ace’s development, to accept the parts of his story that I hadn’t planned for, and to celebrate the gift that he is. Sometimes that means watching these adults with Down syndrome learn to express their emotions or celebrate personal victories, and reminding myself that my boy will likely experience the world the way they do.
It’s receiving the challenges as they unfold. My little nugget of a baby needs to gain more weight. It’s learning how to feed him intentionally. It’s learning how to play with him in a way that both challenges him and blesses him. In short, it’s being a mom. But being one in which the microscope narrows in on every step along his development, the steps I didn’t even realize we were taking with my older typical boys.
2015 was a challenging year, not only because of Ace’s diagnosis, but because of changes within my church. Birth is painful and beautiful and my church birthed a new story, and I was a leader in the midst of it. Receiving meant owning my decision as a leader. Receiving meant acknowledging the pain and the joy in front of me. Receiving meant believing in the power of Christ to lead us, even when it felt frightening, even when I failed to lead perfectly. Receiving meant pursuing reconciliation.
2015 closed with the loss of an important friend in my life. I’ll write more about Ali when I’m ready to. I’ll tell you this. I scratched my car on the flowering succulent bush in front of her house in November, a week before she passed away, the last time I saw her on this earth. Sometimes I run my hand across the scrape, while I’m calling my kids out of their seats and out onto sidewalks. It’s just a scrape on a car, I know. But it feels like some sort of ebenezer, a memorial of sorts, stones piled high in the place where God was.
We cannot love another person without being marked by them. Sometimes life is about receiving the marks, letting ourselves be hurt because loving people hurts sometimes.
On the other side of 2015, I’m beginning to understand this: And maybe I did. This past year was our fourth straight year of drought in California. Rainlessness and hard dry ground. The grass in our backyard dried up into stickers and yellow crackling, lifeless stuff.
The grass lies dormant underneath. At least that’s what the people at the garden store said when I came in to buy grass seed to sprinkle before the coming El Nino rains this month. No, they said. It’s not really dead. What you need is grass food. It’s all still there underneath. Just wait for it.
Before we can cultivate the dormant grass, we first learn to receive the rain. Receiving is making space for more.
All along there is something living underneath the death we see. It’s waiting for the specific rain that brings it forth into the world. What looks like dry ground. What looks used up and undone.
Cultivating starts small. First we receive.
And then God brings forth what God brings forth.
When I got the prenatal diagnosis for Ace's Down syndrome I felt a strong sense of separation. I was no longer a typical mother raising typical kids. I was different. My husband was different. Our family was somehow other.
This wasn't something I worried about for long. From the beginning our friends and our church community have checked in with us, have rallied to pray and listen, have cheered when Ace's health has been great, and have given him more kisses than any baby prince.
Honestly, I think we did the Buddy Walk because we needed to see that we'd be okay. I think we just needed to see people cheering for our little guy. We needed to know that our friends' kids would be raised to love him and celebrate him, we needed our older boys to associate Down syndrome with something wonderful, not something scary, not something unknown.
So we did Zumba led by Yulissa, the first ever certified Zumba instructor with DS. (She was amazing.) We carried a banner and cheered for our team. We marched around the park in a parade of rainbow shirts.
And I said this simple thing to our team before we marched out: "When we got Ace's diagnosis we were so afraid we'd feel alone in this. I want you to know we don't feel alone at all. We feel surrounded."
That's what community is for. This year has been a hard one for my church. The shaking of my church home has mirrored the shaking of my life with this diagnosis. But it's also mirrored the beauty of friendship and the beauty of holding tight to one another. My baby is the most lovely thing I've ever seen. His eyes are not my eyes--those extra folds, that space along the rim of his nose. But then again, my oldest son took his baby picture to school last week and his whole class (at least the girls!) said, "You looked just like Ace!"
What I'm trying to say is that we belong to each other. It's not always the surface similarities that make us look like one another.
Sometimes the walls shake and the tide washes into all the structures we thought were sturdy and the life we knew drifts away in a soft current, just beyond us, unreachable.
Life changes. And my life doesn't have to look like yours in order for us to love each other. We get to love each other anyway.
And so we wear our rainbow #ACEface shirts, in all its many forms. And we dance like crazy to Zumba and cheer for all the children who stand before us.
My life is not like yours, but we are each other's. Isn't that the story of the Church? All these years, all these broken parts, and still we hold to Jesus.
Dear new parents of a child with special needs,
I saw your Facebook post. Congratulations! The way I see it you had two deliveries yesterday: One was bringing your baby into this world. The other was telling the Internet that your baby is different. Both require deep courage. You delivered graciously and with joy.
I’ve been thinking of you all night. I got up to breastfeed my baby at 3:40 am. He’s back asleep in his crib at 4:15, and I can’t go back to sleep without writing you. I’ve been a parent for seven years, but my experience in this new world of special needs is small. I’ve been doing this for almost six months and I’m still fumbling to understand how I feel about my baby’s diagnosis. But I can’t go back to sleep until I tell you a few secrets. The kind you write each other about at 4 in the morning. You’re parents of a newborn. You’re up anyway, right?
Here’s what I want you to know:
1. When my child was born I wept. Some of my tears came from a place of love, and some from a place of fear. And I’ve learned I don’t have to categorize those tears. I don’t have to decide if I am happy or sad, thrilled or overwhelmed. I get to be all at the same time. Parenting our child with special needs will mirror the human experience. It will be wonderful and it will be painful.
I’ve learned to think of my grief and my deep love for my baby as a braid woven through my chest, pulled tight. I don’t have to know where the love ends and the fear begins, only that they wrap around one another. Sometimes it’s hard to distinguish my anxiety from my joy. Sometimes it’s hard to distinguish my love for my child from dreams that have been lost.
I simply know this: the love I felt when I first saw my baby is not diminished by my sorrow. Love is never diminished by pain. They have always lived equally together as long as parents and babies have lived on this earth.
If you need permission to cry, like I do, here it is. You get to cry because your baby is beautiful and particularly yours. You get to cry because this diagnosis is hard and no parent ever wants their child to suffer. And you get to cry because your baby cried all night and you’re tired. Which brings me to my next point.
2. Just because your baby has different challenges, it doesn’t make you a saint. Good grief, I refuse to count the amount of people who have told me they admire me for being Ace’s mom. It’s nice of them to say that. But saying that I’m special for loving my child sounds a little like this: “You are amazing for being the mom of your child! I just couldn’t love your child!”
I assure you, that sucks. But, also? No one who says this means to hurt me. There are people who think my husband and I are special for loving and raising our baby. That’s because our child’s diagnosis is frightening. And it's also because loving Ace is changing us in beautiful ways.
The reality is that most people simply don’t know what to say. So, when their words are painful or trite, I’ve learned to tell myself that they’re doing their best.
What they want to say is: “This thing you are doing is hard.” If I let their fumblings come to me coated in grace I will hear their kindness. The compassion is in their eyes if I’m willing to seek it out.
3. Relearn the definition of a blessing. Often sweet people will call my baby a blessing. And most of the time when they use that word they mean something close to rainbows and unicorns. They mean my baby is an angel who will always bring happiness.
Sometimes it’s hard to hear that (despite my baby being as adorable as an cherub), because Ace is just as human as any other child. He may be sweet but one day he'll complain about dessert and TV shows and picking up his room, just like his brothers.
In order to receive their words with grace I’ve been teaching myself what blessing really is: You know the story of Jacob and God struggling all night in that mystical wrestling match.
I’m making that my parenting mantra. This journey will be hard, for us and for our children. Blessing is hard-won. It is being set apart. Jacob wrestled all night and demanded a blessing. You know what he got? A lifelong limp and a new name. Also? Legacy. He was the father of a great nation.
Blessing is not for the faint in heart. It is always accompanied by suffering. I’m learning to embrace the struggle. I won’t let go until God blesses me.
And when the acquaintances say blessing without acknowledging wrestling, I don’t have to be angry. I just reinterpret their words for myself. If I can hear the truth in every easy phrase dished out for shallow comfort, I will survive this. You will survive this.
4. Every parent suffers. Your suffering just showed up early. Most babies don’t struggle to breastfeed because of low muscle tone, or illness, or the formation of their mouths. Most people don’t have to send their newborn into surgery. I’m sorry your first days of parenting are extra hard.
But, here’s the truth: Every parent suffers deeply. Whether you suffer at the beginning or later. Whether your suffering is over the rebellion of your child, or the fear for their safety, or your own daily parenting failure, being a parent is always hard. It is always beautiful and miraculous and heartbreaking. Your heart is breaking a little earlier than most. I think that’s what people mean when they say you’re special. Or they say they admire you. Or they say your child is a blessing.
What they really mean is that you’re learning the secret earlier. What they really mean is that your wisdom is something they wish they had, but they don’t want to suffer to get it.
I wonder if you can rest in that. Your suffering has shown up early and it will keep showing up. But that braid of love and sorrow? The third strand is wisdom, friend. It’s there already, woven so tight you may not recognize it yet. You don’t have to. Right now you just get to receive. Receiving sounds passive, but it’s not. It’s the work of labor, of delivery. It’s the work of bringing a child into this beautiful and dangerous world, cleaning his body and holding him tight.
Do you remember that Mister Rogers song? . Sometimes I sing that song for Ace while I’m changing his diaper or we’re playing on the floor, and I remember the panic that rose up my throat in those pre-natal diagnosis days, and in the hospital after his birth, when I’d let myself think through what his Down syndrome would mean for our lives. Sometimes that panic still shows up. Sometimes I am so afraid for the future that I cannot breathe.
But what I’m trying to say, six months in, is this: I mean it. I like him, I like him, I like him, exactly as he is.
I receive my child. I won’t let go until you bless me. Pray these things. And hold tight, dear ones. This is a wonderful, dangerous season of wrestling. Don’t let go until you’re blessed. Until your name is changed. Until you come out limping.
It's been 4 1/2 months since Ace was born, and I'm just beginning to wade into the world of Down syndrome awareness and inclusion. I've been taking a seat here behind my screen, just watching and paying attention to what's going on in this subculture I've just entered.
So much of my learning is coming from some of my favorite Instagram accounts:
@etst -- Kelle Hampton is the author of Bloom: Finding Beauty in the Unexpected and blogger at kellehampton.com. She has such style and takes beautiful photos. She has introduced me to Ruby’s Rainbow, a beautiful scholarship program that is helping students with DS attend college. Check it out. (And then try not to cry!) She's also introduced me to the #changingthefaceofbeauty campaign, which is working to make advertising more inclusive of people with disabilities.
@theluckyfewofficial -- I love Heather Avis in this Instagram account. I don't know her at all, but her spirit is lovely and so are her three kids, two of whom have Down syndrome. You guys have to watch Macy dance. She is dancing all over this account and I just adore her. Heather also blogs at heatheravis.com and is the host of my favorite Down syndrome hashtag #theluckyfew.
Heather Avis' account introduced me to @littlest_warrior (Littlest Warrior Apparel), who is currently selling so many amazing t-shirts that I keep almost buying. Here's Ace wearing his "chromosomally enhanced" Littlest Warrior shirt last month.
Also, I'm a big fan of @jimbo_is_the_man. There's just something about seeing an older man with Down syndrome living a full, joyful life that gives me a lot of hope for my little guy.
Have you seen the video of Gungor's newest song about Lucy, their little one with Down syndrome? It is lovely:
Chris and I are only just learning (and watching) what Ace's life will mean for us. But we're so thrilled to step into advocating on behalf of Ace and all the little ones born with DS, many of whom do not have the support or opportunities Ace will have.
This year we're walking in the Buddy Walk on October 17 and we're wearing super cute t-shirts designed by TeePublic. You're all invited to be a friend of #ACEface and purchase your own shirt! All proceeds from the sales will be donated to the National Down Syndrome Society. You can also support Ace and all his friends by giving to our fundraising page for this year's NDSS Buddy Walk.
(Pick your own style and color! Kids sizes too!)
It's an honor to share my stories here. Thanks for reading and cheering for Ace from afar.
This past Sunday night was the year anniversary of the night I discovered I was pregnant with Ace.
It was August 17, 2014, the night before the first day of school and Chris was leaving for a redeye to somewhere I can’t remember now. I’d be alone for that first week of school while Chris was off on what was (in my mind only) some exotic work trip. He was leaving in ten minutes and I knew I couldn’t wonder if I was pregnant for the entire week he was away. Which is better? Knowing or not knowing?
Chris was frantically gathering his bags, lacing shoes, calling the Uber to pick him up and take him to the airport.
The result was positive. I sobbed.
. . .
“There’s no way I’m pregnant,” I told my friend Anne the night before that test. “I just don’t feel it. When I’m pregnant I feel something.”
That’s not entirely true. Once before I hadn’t felt it. I’d taken a pregnancy test in April and been shocked to find it positive. Those weeks leading up to the test had felt so different than I’d felt with August and Brooks. Probably it had just been the hormones with my first two boys that made warm waves in me. But somehow I had felt my babies there those times before, smaller than blueberries, swishing around. In April I didn’t.
And still. That baby in April was celebrated. I cheered, hugged my husband. I tried not to think about why it was different. A month later, I knew why. I stared at the ultrasound screen and my baby had disappeared. All that was left in me was the remains of a pregnancy that hadn’t worked.
That’s why. I’d thought. That’s why I didn’t feel it.
My friend Anne and I were on a night walk along a path that night in August. We were at a church retreat and had snuck away from the Saturday night gathering for a summer’s end catch-up chat. “But you could be?” Anne said. “You could be pregnant.”
She wanted to know how I was doing after the loss of my pregnancy two months before. She was four months along. Our babies would have been due at the same time.
This is all I knew: With the third pregnancy, with my miscarriage, I didn’t feel a surge of recognition that something powerful was happening in me. I didn’t feel the heat in my middle. I didn’t feel cells dividing.
“If I’m am—if I’m pregnant—then something’s not right.”
I said that. I said that the night before I knew.
. . .
I took the pregnancy test while Chris waited for his Uber to arrive.
I wept. I’m going to lose this baby again. I’m going to lose the baby. I cried into his chest until the car arrived.
Chris promised to call when he got there. He promised I could make it through this week. “You’ll be okay. This is great news, right?” he made me look in his eyes and smiled.
Then he was gone. It was time for real life. I was pregnant and something was wrong.
. . .
It’s funny how you look back on things like that. How you remember, even though you can forget in the midst of the pregnancy. I held my breath for a month, waiting for the 8 week check up, certain they would tell me my little babe had gone missing in my womb, had never developed. Yet there he was on the ultrasound screen. A heart beating wild. I let myself forget that I had been afraid. That his presence had been too quiet.
Maybe the difference is hormonal, I told myself. That must mean it's a girl!
We’d know soon enough. We’d get our prenatal diagnosis of Down syndrome at 20 weeks, just two weeks after learning that our baby was not, in fact, a girl. All sorts of signs in my pregnancy would point to low hormone levels. That feeling. That lack of feeling.
It was an extra 21st chromosome. That’s what it was.
. . .
I’ve been thinking about this: Trisomy 21 is not a condition that comes later in the pregnancy. It’s not something going wrong in the development of the embryo or fetus. It’s not something the mother does wrong. It’s not something the father does wrong. It just is.
That third 21st chromosome is present when the first cell splits. Ace has always had it. Most likely, the extra 21st copy was present in the egg or in the sperm before an embryo was even formed.
Who is Ace without it? He is not himself. Right?
. . .
I’ve been thinking about that this week. About how I cried long before I knew what I was grieving.
About how Ace was not what we expected and how he was himself long before we knew him.
This summer, while August and my husband rode a roller coaster up and up toward the first steep drop, August shouted at Chris above the metal’s scrape: “Aren’t you glad you picked me?!”
Chris wasn’t sure how to respond. He managed an “ummm, yes, of course!” and a “What?” in the same breath.
“I’m glad I picked you," August yelled. "When I was with Jesus and I saw you I knew I wanted you to be my dad!”
What sweetness, to think of my unborn babies picking us, in all our faults, all our goodness. To think of Jesus offering such a choice.
I’ve been imagining Ace picking us, exactly as he is: The secrets he knew about himself, the secrets he and Jesus knew about us as Ace’s parents. All of it discussed in the secret meeting between Ace and Jesus.
And, here we are. One year later. Don’t ask me what I believe about whether God ordains mental disability. I don’t know. Don’t ask me if heaven is a place where Ace will lose that third 21st chromosome and still be himself.
There are still a lot of things for me to sort out. But right now I’m thinking August is onto something. And Ace just might have picked us. What can I say to that except to hold it holy in my hand?
He picked me. From the very beginning. He picked me.
We lean over the pack-n-play travel crib in a dark room at their grandfather’s house. August is a newly minted seven year old whose past two weeks have been filled with swimsuits and slabs of sunscreen. We’re on an extended trip to the east coast, where the sun shines hot in the summer and grandparents and aunts and uncles seem to be waiting in every town in the mid-Atlantic states.
It’s afternoon. He’s followed me and Ace into my room where the crib is. He wants to help. I swaddle his baby brother and he sings with me a silly lullaby, the same one he sings to Ace when he cries in the car.
“Mom,” he whispers. “I want you to pray for Ace.”
“Okay.” I lay his brother down inside the crib. “What do you want me to pray for?”
August, who faces scary dreams on a regular basis, asks first that I pray that Ace won’t dream at all. (“I don’t want him to have a bad dream. And if it’s a good dream, then he might be sad it isn’t real.”)
And then he adds, “And pray for his Down syndrome.”
“What should I pray about his Down syndrome, buddy?”
“Pray that it won’t hurt him.”
When Ace was born 12 weeks ago, Chris and I weren’t sure how to tell our boys about Down syndrome. They’d never known anyone with DS. How could they understand what it would mean for their baby brother, what it would mean for their lives? When we were given Ace’s prenatal diagnosis I wept first for them, for the responsibilities they’d have to hold, for the challenges they had never asked for. How would it feel to hear some kid in their class make fun of their little brother? Which of them would feel pressure to care for their brother when Chris and I one day can’t?
We’d been reading a book lately. So when I told the older boys about Ace’s diagnosis, when I took the book’s advice and described DS as being something that would make Ace really good at some things (most flexible member of our family!) and in need of help in other things (“Crawling and walking might be harder, but we’ll cheer him on and help him learn”), the boys weren’t afraid at all.
In those early weeks, when other parents at August’s school would ask about how Ace was doing as I walked my first grader into class, August would tug on my sleeve (“Mom, tell them about the Down Sin Drum!”), excited. Something was wonderful and important about his brother.
We haven’t faced the hardest things yet. Ace was born with a healthy heart. When he was 10 days old I held his six-pound body as cardiologists strapped electrodes to his tiny chest. I sat beside him and stared at the screen while the fluttering tree of his heart’s chambers swayed from side to side. Such beauty inside him. A heart that worked.
When August asks me to pray for Ace’s Down syndrome, I think first about how grateful I am for that healthy heart. Then I think about the blood tests Ace will have every six months. It's the possibility of blood diseases that keeps me up at night.
Then I think about how it will feel to watch my friends’ babies develop typically, while my Ace struggles to sit up, or crawl, or say his first words. I worry that Ace’s speech will be difficult for the world to understand.
I think about how much I love words, how I want Ace to be able to read books and write his own stories. I think about how gentle and loving he already is, and how afraid I am that despite all the love he has to give, the world will fail to love him back.
Pray that his Down syndrome won’t hurt him, my oldest son says.
There is so much we ask in so few words, Lord. Such depth to this prayer.
My seven year old leans over the crib and says, “Have a good nap, sweet baby.” And I take a deep breath. So many deep breaths lately. So much weight for so small a life.
That it won’t hurt him. We pray that it won’t hurt him.
This is Ace. Ace Christopher Evans.
He's named Ace after Batman's dog. At least that's what August (our six year old) told us a couple of months ago after we'd already been referring to him as "Ace" in the womb for months. Back in November, August had finally given us his blessing on this new member of our family. "If it's a girl, name it Sarah. And if it's a boy, Ace."
Listen, I had no intention of naming my baby Ace. But it was a cute nickname. And somehow, two days after his birth, when he still didn't have an official name, and the hospital staff and all our friends were referring to him as Ace, making his big brother's wishes come true felt like the exact sort of thing Ace would want. He's just cool like that. He's tops; he's aces.
He was born 10 days ago, on Saturday April 11, at 2:07 in the afternoon. I was in labor for 27 hours, mostly at home. He weighed 6 pounds, 11 ounces, and was 18 1/4 inches long. And my body and baby were kind enough to wait for my mom's flight to land halfway through my labor. (She'd already planned to arrive that day.) Ace was born at 38 weeks, which felt like a miracle. He was born without my having to be induced (despite my rocky last few weeks leading up to his birth, and our constant concern about some complications he faced in the womb). He was my first birth without an epidural, with a doula and my super-husband cheering me on to the finish line.
He was born with Down syndrome.
This wasn't a surprise. Chris and I learned that Ace had a 99.75 percent chance of having Down syndrome back in December. We chose not to have the amniocentesis that would make our prenatal diagnosis certain and we went into the rest of my pregnancy with a mix of foggy sadness and hope. See, I had never imagined this for my family. (Who does?) But I'd also grown up the child of a mother who for thirty years taught deaf and hearing impaired children who often had additional special needs. I'd volunteered in her classroom in my teens, and known the folks in my church's special needs ministry growing up.
When the woman on the other end of the line told me that my child would most likely have Down syndrome, I was pushing Brooks in a stroller on the way to gymnastics. I made the call for the test results convinced that if I called nonchalantly, if I called on the way to somewhere, alone with my 3-year-old, it couldn't be hard news. I'd breathe a sigh of relief and continue on my day. Instead, that Tuesday morning in early December I cried in the corner of the bleachers during the 3-year-olds gymnastics class. I called my husband on the phone, trying to make out the words, The test came back positive, stunned.
I couldn't tell you about it then, readers. I had to keep it close all these months. It was too heavy, too real. Instead, in December I wrote about good gifts. Ace was that gift.
"This past week has reminded me that God’s good gifts are not always easy. They are often complicated, prickly things that must be held carefully with tender hands. They are often painful and beautiful at the same time. They are unknown. The best gifts God offers us are often the very gifts that have the potential to completely upend our stories, change the direction our lives were going. It hurts to change direction."
All these months, Chris and I have cried and looked again at our hearts, asked God to show us our motives and our assumptions about our family. We have imagined life with a little boy who has Down syndrome. We've imagined the gift he will be to our older boys, the way God will shape their souls through this child, the reality that when I pray for my older sons to grow up to be men of compassion and gentleness, courage and kindness, that this little brother of theirs might just be the way God chooses to answer my prayers.
We have dreamed and laughed together about this new life we are entering. And we have remembered that, really, this is not a new life at all. It's simply the road we've been walking all along, and we just didn't know it yet. That's how grace usually works, isn't it?
Ace was born 10 days ago, and the moment I held him in my arms, I looked at my husband. And we both smiled. "Look at that face," I said. "This sweet baby has Down syndrome." And Chris touched his head. "Yeah," he smiled at me. "He does." And---by the blessing of God---that is how we knew. There were no solemn doctor diagnoses. There was no secret whispering among the nurses. We received him, met him, and knew.
And the grief and the fear didn't disappear. But it did feel like that grief, the fear that had moved in months ago, that had taken up residence for a while, was now content to scoot down the bench in order for something better to sit beside us: Love, and sweet dreams for Ace's life, and relief that God has given us the better gift, even if we don't yet know what that gift will look like.
This is what I wrote last December, when Ace was a tiny baby in an ultrasound, a positive result on a chromosomal test:
"The good, hard gifts don’t usually come with explanation. They don’t come with instructions, or future promises of ease. And still they come and ask us to hold them, to say “Yes” along with Mary: to receive, not because we know what awaits us, but because we trust the goodness of the One who gives."
This is Ace. He has Down syndrome. I'll tell you more about him as I learn him, as I walk through this new experience of being his mom. But for now, Chris and I are honored to be his parents. And his brothers kiss those fat little cheeks and call him perfect.