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.
Vera Lair | Stocksy United
(This article was originally published Aleteia For Her magazine, and is no longer available there.)
I’m the mom of three boys, and though I live in San Francisco—the land of organic veggies on every corner and required composting—I’ve never really thought of myself as a poster child for breastfeeding. But, in the past eight years since my oldest son was born, I’ve spent exactly 43 months of my life breastfeeding a child.
I’m sure you have ideas of who this means I am. I must be wildly free spirited. I must wear cut off jean shorts and birkenstocks and sew my own flowy shirts. I must be one of those women who don’t wear bras and who have no qualms about pulling the boob out in front of the entire park-going public, while my five year old says, “Mother, may I please drink from your breast?”
To answer your questions: No, my older children don’t breast feed. No, I don’t sew my own shirts. And I’m not—and never have been—what people might describe as “granola.” Actually, I wear spandex more often than I probably should. I wear makeup and always always wear a bra in public. I have strong concerns about showing my boobs in to the park goers (and anywhere else, actually). And yes, I still breastfeed my seventeen month old.
Here’s what I want you to know about me and my baby, Ace. Ace has Down syndrome and experiences delays in several areas of his development. He’s the size of a twelve month old and he nurses five times a day, despite his age, despite the fact that I never planned to still be breastfeeding a seventeen month old as much as I do. Ace has refused a bottle since he was three months old, and is still working with a therapist to build the muscles in his mouth for cup drinking. He breastfeeds because if I left him to receive all of his liquid nourishment from a sippy cup, he would wither.
Our life is full, so while Ace works once a week with his feeding therapist, I nurse him in the baby carrier while I pick my older kids up from school or during my eight-year-old’s swim class, or my five-year-old’s soccer game. I breastfeed him at the park and at the grocery store. I breastfeed him while I play board games on the living room floor. And, yes, I breastfeed him at church.
If I didn’t nurse him in public, I’d be incapable of tending to my older children. If I didn’t nurse him in public, he’d literally shrink.
Pope Francis and the Nursing Mamas
Back in 2014 the Pope surprised a lot of folks when he encouraged some mothers of babies waiting to be baptized to feed their crying infants.
Yes, he meant they should breastfeed their babies. In church.
To quote Pope Francis, “If they are hungry, mothers, let them eat, no worries, because here, they are the main focus . . . I wish to say the same to humanity: Give people something to eat!”
Will all the mamas out there please stand up and give Pope Francis a standing ovation? Yes, if a baby is hungry, that sweet child should drink some milk.
It is a beautiful thing when a spiritual leader can recognize the good and powerful gift God has offered most mothers and their babies: nutritious, simple food for young ones who need to grow. When the Pope welcomed the women worshipping beside him to feed their babies, he welcomed a healthier, more grace-filled vision of families in the church.
Breastfeeding is not about sexuality
There may be some who hear the Pope’s words and shrug their shoulders. Of course women should be breastfeeding in church! Why should this even be a discussion?
But there are plenty others who view the act of breastfeeding, and the exposure required (even while covered!) to be inappropriate for a place of worship. After all, we know what’s going on under that hooter-hider, and it involves bras unsnapping and a baby’s unhindered gulping noises (not to mention the burping and pooping that often comes with the drinking process). It’s hardly the stuff of holy, prayerful reflection!
I’d have to disagree. Perhaps breastfeeding in church is uncomfortable for some people, but if it is, it’s uncomfortable because of a failure to recognize the holy goodness of feeding a child. It’s uncomfortable because it’s messy, because it’s sometimes loud, because breasts have been over-sexualized in our culture. Breastfeeding tells the people around you, “I have boobs!” and—if we buy into our society’s glorification of breasts as a man’s trophy to accept or reject as he wishes, to judge and pervert—the acknowledgement of a woman’s breasts can be distracting from worship. But it doesn’t have to be distracting. It shouldn’t be distracting.
Unless the church chooses to reject our culture’s obsession with over-sexualizing the bodies of women, we will buy into a false story of the gifts God has given us. God has equipped mothers to nourish and protect their children, both literally and figuratively. That should be celebrated.
There is no better place for nourishing a baby than the very place where each week Jesus offers us his own body and blood for our spiritual nourishment.
Breastfeeding is not a debate, it’s an opportunity for compassion
There are some who insist that breastfeeding is a private thing and should be done in the home. There are some who will tie modesty to breastfeeding and point to scripture passages that should keep all of us nursing mothers well-covered. And there are some who draw a hard line in the sand, determining when babies should be old enough to move away from the breast.
Still, there are also those who would quickly judge a woman who can’t breastfeed, or has chosen not to. Because of the breadth of beliefs about breastfeeding, women of all opinions and choices have been labeled weak, uncaring, or backward. When it comes to women’s choices and parenting standards, there are camps for every particular belief, a reason to label any mother a failure.
But, then there are Pope Francis’ words: “If they are hungry, mothers, let them eat, no worries.” Church should be a place where hunger is met. Church should be a place where the broken, the beaten up, the weak, and, yes, even the exhausted nursing mothers are welcomed to come and receive from God’s table.
Of all places, let’s bring our babies to church and breastfeed them. Let’s model ourselves after the God who gives us good things, who nourishes, who provides.
And let’s have compassion on one another. After all, I’m the woman nursing her older baby, worried about his weight and his muscle development. And you may be the woman who couldn’t produce milk, who wept every time you prepared a bottle of formula.
If we heard each other’s stories, if we listened to one another, if we chose mercy over judgment, the Mommy Wars might come to their natural and gentle conclusion.
What matters is the beautiful, remarkable work of giving and sustaining life. What matters is how we welcome one another and how we show compassion, whether that happens under the hooter-hider on the back pew, or as we receive the Eucharist at the altar.
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!
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.