5 years in…

It’s been a long time since I’ve made time to write. Years, actually. But since Christmas Day marks 5 years since our Down syndrome journey began, I’ve found myself thinking about everything we’ve been through these last 5 years, and I just needed to put some of my reflections in writing. 

You see, we’ve been busy. Busy learning and growing and taking vacations (Disney, anyone??) and going to swim lessons and ice skating and gymnastics and therapy appointments. We’ve had IEP meetings and been through several surgeries. I started a business. Our daughter finished 1st grade and 2nd grade. And Eli has nearly 2 years of preschool under his belt and he seems to be the most popular person everywhere we go. 

Our life has marched on.  

As I look around my house, I pause. There are toys scattered haphazardly on the floor–in every room, it seems. Evelyn’s toys. And Eli’s. There are piles of laundry to put away–little boy shirts and little boy pants folded neatly next to little girl school unforms and leggings, just waiting to be tucked into a drawer. There is art work decorating the walls in every room–Evelyn’s art work. And Eli’s. His are no doubt the products of occupational therapy sessions at school, with their crooked cuts and shapes pasted sideways. We’ve seen his coloring go from unfocused to purposeful. We’ve watched him learn to trace a path. We’ve listened as he learned to say his name. His full name. And his sister’s. (And we laughed as he generalized her middle name–Sophia–to everyone else: “Mommy-phia,” “Daddy-phia,” and so on…) 

He climbs to the top of his bunk bed and the top of his tree house–from the side. Forget the ladder. (He does like ladders, but only at certain times–like when I’m hanging Christmas lights outside and come down to get something, only to turn back around and find him at the top.) He jumps and swims. (And gets moved up to the next swim class on the very. first. day.) Sometimes he has tantrums. (Lord help us, this child can be strong-willed. Spirited. Stubborn.) He’s still working on his colors and learning the alphabet and mastering counting. But he surprises us at the most random times, when he’ll start counting or singing his ABC’s totally unprompted and we hear him and it’s like, oh-my-goodness-this-kid-is-getting-it!! 

Oh, and potty training. That’s coming along too, but we aren’t quite there yet (mostly because we haven’t pushed him). His vocabulary has exploded–he has a word for pretty much everything and he is speaking in short sentences. He can tell us stories–details about his day or things he remembers–and ask for what he wants or needs. (“Give me that!” is a popular demand. We’re working on manners too, although his are generally good with everyone else.) He says, “I love you too, Mommy.” (Even when he says it first.) Yes, my sweet boy, I love you too. So much. 

He tells knock-knock jokes, and he lives for going to Gaga and Papa’s house. He loves going to church and his prayers are so sweet they’ll break your heart. (“Dear ‘Guy,’ Thank you for Mommy and Daddy and pizza and ice cream and Evie-phia…”) His sun rises and sets with his amazing big sister. Seriously. That precious girl is the best. He loves to “wuggle” (snuggle) and read and play outside. He adores our dogs (and occasionally tries to ride one like a small horse). He is obsessed with gloves and Minions and Mickey Mouse. His teachers tell us he has excellent problem-solving skills. And they’re right–he does. He doesn’t know there are some things he shouldn’t be able to do; somehow, he finds a way. Thirsty? No matter–he’ll find his way into the refrigerator and then come find me, full gallon of milk in hand. “Mommy, I want milk. Heavy!” 

He is a leader in his classroom and helps the younger children. We can’t escape day care without several other kids–from different classes–stopping to hug him and say goodbye. I love when they stop me as I’m walking in–“Are you Eli’s mom?” they ask. “He’s my friend. I’m his good friend.”

Yes, we’ve been busy. But so have you. And that’s my point–our life has marched on, just like yours, and it’s been overwhelmingly good. There was no way, of course, that as I sat holding my critically ill newborn 5 years ago, I could have imagined how perfectly and boringly typical our life would be. That I’d be tripping over legos and hot wheels, just like my friends whose sons don’t have Down syndrome. Or that I’d never get tired of seeing just how excited he is every time I walk into his classroom to pick him up after school. 

But it’s also extraordinary. 

Better than I could have ever dreamed. Better than the life I thought we’d have when I was pregnant with Eli, before we knew he had Down syndrome. Not every day has been easy. And my family has been through a lot, especially the last year. To hell and back, actually. But it has nothing at all to do with Down syndrome, and here we are–getting better. Growing. Learning. Loving. 

This child–this handsome and hilarious and loving little boy with his extra chromosome–has given my life a new purpose. He has strengthened my faith and taught me more about my capacity to love in his 5 short years than in my entire life before he came along. 

Extraordinary, indeed. 

And yet, at the same time, typical. 

Extraordinarily typical. 

Happy 5th birthday, Eli James. What a beautiful adventure we’ve had so far.

And to everyone that’s stuck with us on this journey, Merry Christmas and thank you. Thank you for loving us, for cheering for us, for supporting us. It truly takes a village, and what an amazing village we are blessed to have. 

Joy.

I read this beautiful post this morning, and after I finished ugly-crying, I had so many thoughts swirling around in my mind. I had to get them out before they got all tangled up together and eventually lost, because that’s what tends to happen when I ignore the urge to write. And while I didn’t experience exactly what’s described in this post, I do understand the heartbreak of losing a pregnancy.

I also understand what it’s like to feel alone–I spent hours of my labor with Eli alone in triage because they couldn’t get a good reading on his heart rate, and because it was the early hours of Christmas morning and we were in a bind–my husband stayed with our daughter in the waiting area until one of the best friends I’ve ever known woke up and made my girl a member of her family that day. I remember wanting to plead with the nurses every time they walked out to please stay with me. I knew they had other patients, but didn’t they see I was alone? And didn’t they know how scary it was to be alone after a difficult pregnancy when you’ve just been told your baby’s heart rate is doing the opposite of what it should with every contraction? But each time they walked out, and I found myself alone again, hoping the next time they came back they would be moving me to labor and delivery. They needed a good 20-minute reading on his heart rate, and in order to get it, they needed me to stay perfectly still through my contractions. While I had planned to give birth without an epidural, I was hoping and praying they would just bring in an anesthesiologist and help me out some. I screamed into a pillow, alone, trying not to writhe in pain. I waited.

I know what it’s like to be told the birth is not going to go as you had hoped, and instead of walking around and using the tub and the medicine ball, you’re going to be confined to a bed and connected to countless monitors. That they’re even going to connect your baby to a monitor. Internally. By his scalp. Using a special needle. And I know what it’s like to want to name your baby after the anesthesiologist that finally shows up when you’ve been moved from triage to labor and delivery, and you finally resign to getting the damned epidural–I know what it’s like to accept that you’ll never be able to be still long enough for a good reading unless they dull the pain. And if you’re not going to be able to get out of the bed, then you might as well have some relief. I know what it’s like to be moved into various positions, to have my bed tilted, to be at the mercy of strangers as the medical staff tries to coax your baby into cooperating with this birthing business. Gravity works.

I know what it’s like to be told it’s finally time to push, but being terrified that when you do, your baby’s heart rate will plummet from the stress. And I know what it’s like to finally hear those beautiful little cries, to be told “it’s a boy,” to hold my sweet baby in my arms, alive. And then to be told–in an amazingly loving and compassionate way–that he has Down syndrome. And a life-threatening bowel condition. For the record, when you’re told your baby has a life-threatening condition, Down syndrome doesn’t really matter much.

I know what it’s like to be trapped in a hospital bed when the transport team shows up in an ambulance the size of a semi-truck to take your baby just a few blocks. I know what it’s like to have them all standing there, heads lowered, speaking softly and kindly to you, telling you to take some time with your baby before they put him in the enormous isolette, where he will be swallowed by wires and monitors and its sheer size. They wait solemnly because they’ve seen it before and they can’t make you any promises–sometimes these babies don’t make it, and they want you to be able to hold him and kiss him and breathe him in before they whisk him away.

I know what it’s like to be taken to the recovery ward without my baby. To hear the cries of the other newborns, and then the silence as their mothers and fathers soothe them and feed them and hold them. I know what it’s like to ache for my baby, to literally feel pain in my chest because he was just in my belly and now he’s not even in the same building. I know what it’s like for your awesome doctor to so generously write you a pass to leave the hospital for a few hours–making you promise, of course, that you won’t walk but rather use a wheelchair, and knowing full well that you would run to him if given the chance–so you can visit your son at his hospital that night. I know what it’s like to be ushered into the NICU, a battered and broken woman, and taken to your baby’s bedside, where you find him so still, with so many wires and monitors, in a pod surrounded by other sick babies and their scared parents. And I know what it’s like to be asked if you want to hold your son and feeling like your heart will beat right out of your chest because YES! YES, of course you want to hold your son.

I know what it’s like for those precious few hours to run out, to have to return to the hospital where you’ll spend the night so that you can be monitored too. I also know what it’s like for the nurses to bend the rules so your mom and stepdad can both stay with you that night. I know what it’s like to sleep very little, feeling a million miles away from your husband, who is with your baby, and feeling anxious anticipation for the morning, when you will finally be discharged and be able to be with your baby again. And I know what’s it like to be afraid of what comes next–surgeries, the first when he is barely 24 hours old; appointments with multiple therapists so he can learn to feed, first from a syringe and then from a tiny bottle; consultations with various specialists and discussions about the best course of treatment for your precious little man; complications that arise after surgery, and all that comes with recovering from that; preparing to go home only to be told it’s not time yet.

But I also know what it’s like to finally go home with your baby, a little unsure what the future holds, but so SO thankful he’s made it this far. And I know what it’s like to remember how not so long ago, you really didn’t know if you’d be bringing your baby home. And that, my friends, is why I will never mourn a Down syndrome diagnosis. It’s why I’ll never question or judge when a baby is born to unmarried parents. Why I’ll never call a baby a mistake. Never. My daughter was born before my husband and I were married. I’m so glad we didn’t wait to start having kids. I have a gorgeous daughter and I am over the moon with her–she is a gift.

And our son, with Down syndrome–I’m so thankful to have him. Because he’s here. He’s alive. Full of life, in fact. I won’t be sad because of milestones that come later (or maybe not at all)–those things that I worried so much about with my daughter suddenly don’t seem so important when you remember how fragile life is and how you’re lucky to have this little person with you at all. I’ve heard people call kids like my son a burden, but I don’t buy it–he is not, and never will be, a burden.

I’ve heard people say I’ll change my mind when he’s grown–what if he can’t be independent? What if he needs lifelong care? Won’t he be a burden then? Won’t it be a burden when my friends are traveling and enjoying their lives with their kids all grown, but I’m still caring for my son? No. No, that won’t be a burden. If he needs my lifelong care, it will be my privilege to provide it, just like I would be honored to care for my husband if he falls ill, or my daughter if she faces a devastating diagnosis someday. I don’t know when or how we stopped believing that we should take care of each other, but isn’t that kind of compassion supposed to be the hallmark of a civilized society?

In his few short years, my son–just like my daughter–has already given me a lifetime of happiness. I see similar sentiments from my friends on social media. We post about how much we love our kids, how we wish they wouldn’t grow up so fast. We say things like “Don’t blink” and we wish we could keep them little forever. And so I just don’t think we can speak of time passing as bittersweet, and lament how quickly our children grow and leave us, while simultaneously cursing the child that might require extended care. Especially when there are mothers and fathers whose arms are empty, parents whose ache for their lost children runs so deep, parents that would give anything to have a baby. How could I complain about an extra chromosome when I have a perfectly gorgeous little boy to love? I couldn’t. I can’t. And I don’t. This life is so good. So. Good. Maybe not what I planned, but that’s ok–it’s been a much-needed lesson for me, that I don’t have to be in control of everything. That my life doesn’t have to go according to plan. And that there can be so much joy and beauty in that which first caused us fear or heartbreak. So much joy. So much.

IMG_4286

IMG_4885-0

IMG_5450

IMG_5119-0

IMG_5451

running for my life

I’m a runner.

That’s a sentence I never thought would apply to me. There was a time I didn’t get running. There was a time I didn’t like running. There was even a time I resented it–-it represented something I wanted to do, but didn’t believe that I could do.

Lately, I’ve been able to say I’m a runner and feel comfortable about it. I still joke from time to time that I know I don’t look like a runner, and I know I’m not built like a runner. But I’m a runner. These days, I’m much more comfortable with how I’m built because I realize now that this is a runner’s body. I’ve waged war against this body for most of my life. (That’s something I could write pages about.) But this body has carried me through a 20-mile training run. And in just a few days, I will cross the finish line at my first marathon.

I’m running because of Down syndrome. I’m running for Down syndrome. I’m running for my life…

*******

Rewind about 18 months. I was in a very different place–spiritually, emotionally, physically, mentally. There were a lot of things going on in my personal life–dark things, hard things. My marriage was deeply troubled. My job was difficult. I spent a lot of time on my own trying to make it with two kids, missing home and my family, loathing my post-partum body, feeling really bad about myself, and–-if I’m honest–-feeling sorry for myself. Somewhere in the day-to-day, I got lost.

My husband, meanwhile, was doing things–important things. Hard things. He was setting and reaching goals. He was pushing himself to do things–like running marathons. And that was hard for me. I did the best I could to hide that, but I don’t think I was very good at it. I did the best I could to show support in the ways that I knew how, but I felt like I’d been left behind.

And then one day, as I scrolled through my Facebook newsfeed (that’s often dominated by posts about Down syndrome), I stumbled upon this group called I Run 4. The premise is simple–to match children with disabilities, especially mobility issues, with runners who would run for them. At the time, I Run 4 was just a few thousand members strong, if that. Now, it’s grown to over 25,000 members and includes kids and adults with all kinds of disabilities (not just mobility issues), as well as different types of athletes.

The stories I read were nothing short of inspirational. Here were these kids that would give anything to be able to run, or play with their friends, or do any number of the things other kids get to do. Kids that work harder to accomplish things that most of us take for granted. Kids that have been through surgeries and treatments and therapies and were still smiling and loving life.

Kids that are tough as nails.

And there I was, wallowing in self-pity, in a pretty bad place and in need of some major change. And it hit me: if those kids could work so hard, what was my excuse?

I wavered for a couple of days before signing up–what if I failed my buddy? What if I couldn’t make it as a runner? It had been years since I’d laced up my running shoes, and I was at a point I thought I would never run again.

But I signed up. I signed up to be a runner.

I waited for about 3 weeks to be matched, and I was matched with a fierce little boy named Shane. Shane has a mega-watt smile and soulful eyes, and he happens to have cerebral palsy. The minute I saw his picture, I was in love. The minute I read the first letter from his mom, I knew I’d found someone to respect and admire–she is an incredible advocate, sharing his journey with so openly, and stopping at nothing to make sure he gets the best care.

Shane has been through so much at his young age. Yet he’s determined. He’s loving. He’s happy. He’s a valued member of his family. And he changed my life. This little boy–-who lives hundreds of miles away from me–-became not just the reason I put my running shoes back on, but also the reason so many things in my life changed for the better–-I renewed my faith and I grew closer to God. I started thinking about pushing myself a little harder. And I wondered if maybe, just maybe, I could run a half-marathon.

And then at church one day, they announced they were forming a running group to train for our city’s famous marathon and half-marathon. They challenged beginners to be bold, to try something they’d never tried. To connect their physical life to their spiritual life. And to trust that God would be the source of their strength during their training. So I signed up to train and showed up terrified the first week. But then I made friends. Really, really great friends. And I registered for my first half-marathon. And then I ran it, with my really great friends, and it was awesome.

Thanks to Down syndrome, I found I Run 4. Thanks to I Run 4, I found Shane. And thanks to Shane, I found myself again.

I’m running for my life.

*******

For the past few days, I’ve been struggling with an article I read in which a mother details what she calls the “merciful termination” of her baby with Down syndrome. I’ve struggled because I think there was a time in my life I would have agreed with this woman. There was a time in my life, after prenatal tests came back abnormal, that I wrestled with what I might do if my baby had a grim diagnosis. I drove myself mad trying to decide what would be the merciful choice. And I had friends and family in both camps. People I never would have expected to support me if I had chosen not to continue the pregnancy said they would support me no matter what. And that scared me. I remember wondering why they weren’t trying to convince me otherwise. (I feel like I should mention that my husband never wavered–-he wanted nothing to do with talk of terminating the pregnancy. To him, it wasn’t even an option worth discussing. And I’m so thankful for that.) I also had friends that reminded me that above all else, my job was to protect my child’s life. That the strong and merciful thing to do would be to love that child fiercely, to give him a chance at life, no matter how short or difficult it might have been. I remember standing in the shower one day, sobbing and praying through my tears before the follow-up test results came back, “Please, God, I can handle Down syndrome. I can handle spina bifida. But I don’t think I can handle the others.”

It doesn’t matter what I thought I could handle–I think God knew that at the time, I couldn’t even handle Down syndrome, as my test came back normal. And although my pregnancy continued to be difficult, I didn’t have to think about whether or not I would have to make the choice to continue it.

I look at my son now and I shudder to think what I might have thought was the merciful choice had I known then that he would be born not just with an extra chromosome, but also with a life-threatening medical condition. I could have been the woman that wrote that article. And like she does, I probably would have stood by my choice. But my choice would have been made on misinformation, which is the other reason I’ve struggled with that article.

Misinformation about Down syndrome is pervasive, even in the medical community. And at this point in the game, as another advocate put it, the challenge is for women to be given the support necessary to continue the pregnancy when a child is diagnosed with an abnormality. Yes, pregnancy termination of any kind stirs up a lot of heated debate–I understand that. But I’m particularly passionate about terminating on the basis of disability because it seems to be more “ok” to terminate on those grounds. Hence why, in so many parts of the world, it’s ok to terminate a child with Down syndrome up to the point of delivery. DELIVERY. As women, we should be fighting that barbaric practice rather than hiding behind our fears and justifying the “choice.” As women, we should be outraged that we are counseled to deny our own flesh and blood because of gross inaccuracies about what life with Down syndrome is like. That makes my heart hurt. It makes me furious. It guts me because accepting it means accepting that society agrees, by and large, that my son’s life is less valuable than the lives of other “normal” children. That he is not as worthy of life.

And the scarier part? Most of society has no experience with kids like my son to have any business making that call. Think about it. I don’t want a podiatrist performing my open heart surgery. I don’t even want him to advise my surgeon because he likely has limited to no experience with cardiology. That’s why I share so much about our life, about my journey as the parent of a child with a disability. Because I don’t want the information to come from those with no experience. Those of us living this life day in and day out–-we should have the loudest voices. And our voices should be taken seriously. Other families should know what it’s really like to live this life-–not what everyone is afraid it’s like, but what it’s reallylike.

*******

As it turns out, the woman that wrote the article is running a half-marathon to raise money for the organization that supported her when she chose to terminate. She wants to open up dialogue about how, when given a poor prognosis, choosing to end your child’s life is the kind thing to do. She wants to normalize her choice.

When I heard this, I couldn’t help but laugh. This woman might be running a half-marathon, but I’m running a full marathon. This weekend. All 26.2 miles. I’m running this marathon–my first–as a Children’s Champion raising money for Nationwide Children’s Hospital in Columbus, Ohio. I’m raising money in honor of all the babies with a grim prognosis that survived because of the care they received at Nationwide Children’s. And I’m raising money in honor of the kids that didn’t survive, for whatever reason, but fought a good fight and passed on with dignity thanks to the care they received there. I’m a Cincinnati local, but our children’s hospital (one of the best in the world, I might add, and where my son’s life was saved) doesn’t have a marathon, so I chose the next best thing. I’m currently nursing an injury from the half-marathon I ran this past Saturday, but I will cross that finish line at the Columbus marathon if I have to hop on one leg!

At this point, it’s not just about running a marathon. No, now it’s symbolic. My running and fundraising efforts are a reflection of all that can go right when finding out your child has a disability. I want the world to know that this life–-this life with Down syndrome–-is nothing to fear. I registered for this event in July; I’m not raising money to compete with this other woman. But I will say this: when it comes to saving children and protecting vulnerable populations of people (like those with Down syndrome), I think I’ve got the more merciful perspective.

I’m running for life.

*******

To support my efforts as a Nationwide Children’s Hospital Children’s Champion, visit my personal fundraising page here.

IMG_4121-0.JPG

the toddler years – naps

I carry him up the steps while he clutches my neck and keeps his little legs wrapped tightly around my middle. He lets go with one hand, pops his thumb in his mouth, and rests his head against my chest as I climb. He could ascend the stairs himself, but he is sleepy. And he is my younger baby–and likely my last baby–and I know I won’t be able to carry him up the steps like this forever. We grab his blanket and his monkey–“Key!” he exclaims enthusiastically–and we make our way to my bedroom. I toss him gently on my bed so that he bounces–just barely–and lands comfortably among the pillows. He smiles at such fun. He clutches his blanket and monkey, rolls onto his belly, tucks his legs under his little body, and points his diapered bottom at the ceiling. He turns his head away from me slyly, returns his thumb to his mouth, closes his eyes, and pretends to snore. He giggles, then looks at me. I laugh too and he does it again.

I roll over and wait. I know what’s coming. He does this every time. I brace myself by holding my breath and closing my eyes. Within seconds, like clockwork, I take an elbow to the kidney, then a knee, as he crawls over me to see if I’m awake. He assesses my level of consciousness to determine how much he might get away with this time. I open one eye just enough to see what he’s doing, but I can already feel him creeping closer to my face. He wants to be sure. When he’s satisfied that I’m asleep, he crawls back over me to the other side of the bed. He doesn’t yet understand that crawling over someone is a good way to wake them up. This makes me smile.

He slides to the edge of the bed and dares to make his escape. I turn just in time to catch him jumping off, and he knows he’s busted. We both laugh. He tries to evade capture, but it’s no use–I snatch him up and smother him with kisses as we get back into bed. He needs to take a nap and I will win this battle. I try again, rolling over so I’m not facing him because I know he won’t go to sleep if he can see my face. He’ll just try to play. No matter–he crawls up to my head this time, grabs it, and attempts to turn it toward him. I am forced to roll over and face him. He places a chubby little hand on either side of my face and turns my head one way, then another. He shoves a finger in my nose, then another in my eye, forcing it open. He turns my head the other way sharply, catching me a little off guard, and he laughs. He does this a couple more times before I start laughing too. Each time he does this, he studies my face, waiting for my reaction. He wants my approval. He wants me to laugh. He is proud to be funny–he loves being the family comedian. He brushes my hair from my eyes.

He snuggles up to me and rests on my chest. I’m rubbing his hair. He, of course, is sucking his thumb. Again. He is so very sweet, and I think about how quickly he will grow, how it won’t be long until snuggling with his mom is a potentially reputation-ruining offense. The moment is fleeting. He snaps up and tries again to make a getaway. I’ve lost this battle. He is not going to sleep. And actually, I’m ok with that.

He makes his way to the door and knocks. He tries to reach the doorknob and knocks again. I follow and open the door for him. He walks to the steps because he wants to join his sister downstairs. He adores her. His sun rises and sets with her. He grips the banister and begins to maneuver down the steps standing up. This is big boy stuff. He refuses to go down the steps on his rear, and he has paid for his determination in the currency of bumps and bruises–he’s tumbled down these steps more than once trying to be so independent. Each time has shaken me to the core. His cries tear me apart. For a moment, I flash back to just a few days ago when he fell last, and I’m reminded that he’s not exactly like other almost-three-year-olds. I think about my niece–about how she is just a few months older than he is, about how she is potty trained and speaks in complete sentences. It stings for a second. I acknowledge the sting, and I move on. I will not live in this place of fear or grief or regret. My heart is much too full for that. Besides, I’m not sorry my child has Down syndrome.

I go back to celebrating him for where and who he is now. His worth isn’t defined by milestones, and he isn’t less valuable because he needs some extra time. I see him learning every single day. I watch his eyes light up with each new discovery. I delight in his facial expressions, and I can see his wheels turning as he processes the bombardment of information all around him. He is learning. He is growing. He is capable. He is smart. He calls downstairs to his sister. I hear her running to him, and in seconds, she is up the stairs. He squeals excitedly and leans into her. She opens her arms and embraces him. They make their way downstairs and I feel peaceful. This life isn’t scary. It isn’t tragic. It’s wonderful and hard and worth it. So worth it. He has a purpose. He is meant to teach the rest of us patience and tolerance and unconditional love. I can feel it in my bones. This boy. This precious boy. He matters.

I worry sometimes that he is growing up in a world where the number of babies born with Down syndrome is decreasing at a troublesome rate. I worry because we accept disability as a reason to abandon one’s post as a parent. I worry because we live in a society that believes the birth of a child with Down syndrome is cause for an apology. And I worry that others won’t see that he’s a human being, worthy of dignity simply by virtue of being human. I look at his blond hair and bright blue eyes. I take in his smile and I can’t imagine how our family ever got along without him. He watched his sister and dad walk out the door today without him and he covered his face and sobbed. He has feelings like we all do. He is not simple. Not at all. And his existence is part of a divine series of life-affirming events. He saved me, this child. He still saves me. While I do not know what the future holds for him, I know this much is true: before he was born, he was wanted; after his diagnosis, he was wanted; and –without a doubt–he is loved. Immensely. And I hope he knows that forever.

IMG_3114.JPG

IMG_3113.JPG

Almost.

Hell of a summer it’s been for us. Both good and bad. The paradox of the-hell-of-a-good-summer and hell-of-a-bad-summer has weighed on my mind for most of the last 3 months. I have a different post about this prepared and ready to be published, but I haven’t been brave enough to share it yet.

What I am brave enough to share right now is that once there was a man and a woman, and for 8 years they loved each other the best way they knew how. And it almost wasn’t good enough. Almost.

They shared many laughs and tears and burdens and blessings. They grew up and they fell apart. They argued. And argued. And argued some more. And sometimes they said really mean things and forgot that they were supposed to cherish each other. They forgot to be patient. They forgot to be humble.

In those 8 years, they wrote love notes and planned surprise dates. They took care of each other in some of their darkest moments. They traveled, they dreamed. Sometimes they stayed up all night for strife. And sometimes they stayed up all night for love. Three times they made life together. Twice those babies were born. Beautiful, precious babies, born of a flawed but fierce love. They made a family. They built a life. It was never perfect. But it was theirs

I lie here tonight, cradled in the crook of my husband’s arm. He falls asleep quickly and I hear his breathing change. It slows and then his gentle breaths give way to gentle snores and I smile. He is so familiar.

I breathe him in. That smell that left me intoxicated when we were new to each other. That mix of soap and sweat and him. That smell I love. And I realize, in this moment, that once again I am drunk on his love. I smile again because this is also familiar. And I realize he is comfort and safety and home and love.

In the dim light, I watch his chest rise and fall with each breath. I trace his smooth skin with my fingers. I think about how much I love this man. How much I’ve always loved this man. This man who trusted me with his wounded and broken heart all those years ago. This man who let himself love me in spite of his fears. This man who coached me through childbirth twice, and delivered our daughter, and nursed my crumpled body and broken soul when we lost a pregnancy. This man who never once batted an eye about our son’s diagnosis and who takes extra time with our daughter for the little things because he knows the little things add up to be the big things. This man who works himself to the bone to take care of us. This man who is so familiar to me, who loves me more than I ever knew. I mouth a quiet prayer. Thank you, God, for this man. Thank you for teaching us to love each other better…

For a while, we got lost in life. And our best love almost wasn’t good enough. Almost.

…But tonight, he is here. We are here. A little battered, a little broken, but here. We are healing and growing and loving. We are doing better for each other and for our family. And I think, this is marriage. It’s hard and brutal and it sure can break you. But it’s also beautiful and precious and sustaining. It’s about so much more than just ourselves. And it’s easy to get lost. So easy. I think how different this could be–how he could be snoring somewhere else, how I could be sleeping alone, and I close my eyes to blink away the tears. I can’t imagine my life without this man.

Once there was a man and a woman. They loved each other the best way they knew how. And it almost wasn’t good enough. Almost.

20130813-113057.jpg

American Anthem 2013

This past Thursday evening, the high school at which I work graduated 495 young men and women who, by all accounts, are ready to take the world by storm. I always find myself emotional at commencement exercises–there is no denying the years of hard work that have led students to that day.

This year was a particularly poignant ceremony for me–some of my students, whom I started with when they were 6th graders, marched across that stage at graduation. I had the privilege of helping another one of my students get to the stage and back to her seat without incident (I’ll admit, though, that I was beyond nervous about how it would go; now that it’s over, I’m so glad I could be a part of that moment).

In addition, our high school had an impressive number of students to enlist in the armed forces–with a record number of women. Some of those students already have earned impressive accolades, some have already left home, and some were presented with their diplomas at other events so they could get back to the business of serving our country. All of them, no doubt, are making their families, school, and community proud. And this year, as I entered the hall with my colleagues, all of us brimming with pride for our graduates, I thought back to the last commencement in which I participated–I was pregnant with Eli, knowing nothing more at the time than the pregnancy was off to a shaky start, and my brother was deploying to Afghanistan with the Marine Corps but I couldn’t be there to see him off. I struggled to keep my composure that day, as we could be given no guarantee that my younger sibling would come home to us safely, and I cursed my academic regalia for having no good place to hide my cell phone so I could keep up with my family as they sent me text message updates. This year, as we recognized our newly enlisted students, I smiled inwardly, thankful that my brother indeed came home to us in one piece, a little older and a little wiser than when he left us. The enormity of that blessing is not lost on me or my family. We know that many other families don’t get to welcome their loved ones home. They don’t get to release the breath they’ve been holding since the day they were deployed or relax because they arrived home safe and sound. They don’t get to wrap them in a warm embrace or pinch themselves that their loved one is really home. No, instead, they have to summon the strength–the likes of which they probably never knew they had–to get through one day at a time, supremely proud and painfully aware of the ultimate sacrifice their loved one made.

Here, in honor of that sentiment, is the piece I wrote for Memorial Day last year, with an update or two.

American Anthem
Originally published May 28, 2012.

Tomorrow is a hallowed day for Americans–a day for honoring the memory of our fallen brothers and sisters, those whose sacrifice cannot be measured.

For me, it is also a day of thanksgiving. While I remember those who lost their lives serving our country, I am also reminded that my family is blessed because my brother, a Marine, came home to us safely after two tours of duty.

Getting ready for deployment to Afghanistan – June 2011

20120527-215406.jpg

My brother, BJ Isner – June 2011

20120527-215632.jpg

Unfortunately, there are many American families living with the reality that their sons, husbands, and fathers, or daughters, wives, and mothers, are in harm’s way or won’t be coming home. Throughout the history of the United States, countless families have buried their loved ones, their heroes–our heroes–and others whose departed loved ones never made it home. We reserve the last Monday of May each year to commemorate their sacrifice and reflect upon those liberties many of us take for granted.

You see, for all the complaining we do here in America, I really believe we live in the greatest place on Earth. Our children have the opportunity to attend school regardless of their gender or creed. When I want to cook or get a drink or take a shower, I don’t have to think about where the water comes from or if it will be safe to drink. I don’t fall asleep at night to the sounds of gunfire and mortars, nor do I worry that my city will be home to a foreign occupation or that my house will be overtaken by rebels. I don’t fear for my children’s lives–or my own–and I am free to criticize my government without fear of retribution. I know that regardless of who assumes the office of United States President, there are certain rights guaranteed to me by the Constitution, no matter what some of those fear- and hate-mongering politicians would have us to believe. I am free to worship as I please, or I can refrain from worshiping.

In this country, my son has the right to live regardless of his Down syndrome diagnosis; in other parts of the world, children with disabilities do not fare so well–the Danish government, for example, has vowed to eradicate Down syndrome from their population by 2030, and that’s not because they have found a cure. Likewise, my daughter was not the target of elimination by virtue of her gender, nor was she shipped off to be raised by a family halfway around the world simply because she is female.

I’m not naive; I understand there are complex political and economic motivations behind every war. But I do believe the vast majority of those serving in the Armed Forces do so because they really believe in the ideals on which our nation was founded, on which she still stands today.

We are a generation desensitized to war. Many of us ignore it for the most part. But I can assure you that the families of servicemen and women do not ignore it. I can promise you that after burying their loved ones, those families that have been left behind do not ignore it, they can’t ignore it. But they can push aside political beliefs and ideologies, they can appreciate that regardless of one’s feelings about war, the members of our Armed Forces deserve our respect and support.

I have heard many people say they are sick of hearing that our military is overseas fighting for our freedom. They don’t buy it. And why should they? Most of us are so far removed from it that we can’t begin to wrap our heads around it. We were born free; we haven’t had to work for it. But we have a responsibility to remember this: these things are all wrapped up in unbelievable complexity. We may not know exactly what our military is doing overseas or at home, and we might not know why. But that doesn’t matter. What matters is that these men and women–and their families–are making very real sacrifices so that you and I can continue going about our business, oblivious to where our water comes from. They do it so we can still fall asleep to the sound of crickets chirping, with threats of tyranny far from our minds. You can question the purpose of a war, but you cannot deny that our servicemen and women, along with their families, are giving the very best of themselves.

Take a moment this Memorial Day to think about the freedoms you have been afforded just because you were born in this great land. Be grateful. And say a prayer for the families carrying on without their loved ones. And while you’re at it, watch this.

On Friends (or thank you)

All my life, I’ve known amazing women. From my great-grandmothers–whom I’ve mostly gotten to know more from family stories than from my own time with them–to my grandmothers, and, of course, my mother. I’ve been surrounded by friends that are equally amazing women. My earliest childhood friends have grown up to be women I am proud I once knew (or still know, if Facebook can define those relationships these days). 🙂 My friends from high school are still the ones that know me best and love me anyway–an impressive feat (just ask my husband). And when I went to college, I was literally surrounded by amazing women, a handful of whom I count among my nearest and dearest. Of course, I met some impressive souls in graduate school and at every. single. job. i’ve. ever. had. AMAZING women. My lifelong friends. My best friends.

I think, as an adult, you kind of get to a point when you’re so comfortable with your relationships–friendships included–that it seems that all the bonds have been forged. You don’t think much about meeting your next–or should I say newest–best friends when you already have so many it feels like your heart could explode.

And then, you have a child with Down syndrome. And before you know it, women you’ve never seen before are bounding over to you at your first workshop to introduce themselves and insist that even though you aren’t from their side of town you simply must join their playgroup. You will get emails from women you’ve never even heard of, from cities you’ve never even visited, reaching out to you, welcoming you to the club. And women you’ve met only through social media are so excited to finally meet you in person that they announce with the sincerest of enthusiasm how nice it is to finally meet you and that you’re going to be best friends always. And you smile, taking it all in, wondering if having a child with Down syndrome suddenly transports you to a land of perpetual happiness where all the moms are BFFs… 😉 Of course, you’ll meet a few moms (and sometimes dads) here and there that you just aren’t so sure about. And that’s ok too. But the ones you really click with, well, you find out not very far into the journey how those friendships will come to sustain you.

Now, I know it might sound like the hokiest testament to friendship ever. And, in fact, we have laughed at ourselves, and exchanged some oh GAWD, you must have thought I was so weird moments. Sometimes I think we women try harder to impress new friends than new mates. 😉

But in all seriousness, I’m not sure if those women–the ones I described above–will ever really know how much it meant to me to be greeted with such gusto and warmth during what was certainly an unsteady time in my life, especially with Eli’s medical concerns. I didn’t really know then if those women would become part of my circle of best friends, but I knew that I wanted to be part of a group of women so willing to take in a stranger simply because of an extra chromosome in common. I knew these were good women. And now I know they are amazing women.

To say I don’t get out much is an understatement. Well, let me rephrase that–I actually get out quite often. But I’m carting kids around in my booger-smeared sweatpants in need of a haircut (again) and looking haggard and worn (my husband hates my “uniform,” as he calls it, and can’t believe I would ever go in public while wearing sweats…). But in the not-so-distant past, I actually got out. Without kids, without the husband, but with makeup! On this particular day, I wasn’t feeling so great and almost backed out of going. But I didn’t, mostly because I had been looking forward to it for a week. And I’m so glad I went because I left feeling like I needed to tell the whole world what an amazing group of women I’ve been blessed to know thanks to my son. (There’s that amazing word again. I’ve got to get a thesaurus…)

So let me tell you a little something about these women. These are women of grit. They are tough as nails and smart as hell and witty and brilliant and hilarious. They have plastered smiles on their faces while their babies lay in pieces in the NICU. Or after being cut wide open in surgery. Because they’ll be damned if they’ll let their own fear get in the way of comforting their precious babies. They have listened with fierce intensity and resigned stoicism to disappointing reports and bleak diagnoses. They have exercised the restraint of saints by not tearing apart inconsiderate doctors. Or nurses. Or people that stare at restaurants. Or grocery stores. Or pretty much anywhere.

They are beautiful. Benevolent. Tenacious. They are faithful. They are thankful. They don’t stop until every nurse, therapist, surgeon, and specialist that has loved (and helped) their child knows the depth of their gratitude. They are advocates. They will show up at the hospital to keep you company because they know waiting is hard. They will give you advice about marriage and diets and careers, and they will love your children almost as much as they love their own. They will be the first ones you run to when your child gets a bad evaluation. Or a good one. And you will trust them with things you aren’t even sure you trust yourself with. Because they just get it. Like no one else does. Because there is just something about friendships among women. They are like oxygen–necessary for survival. These women will inspire you. They will make you grateful, once again, for this child you never knew you wanted. And you will sit with them, drinking margaritas, laughing so hard you cry and crying so hard you laugh, thinking to yourself damn, these are some extraordinary women.

And you will think about your other friends. The ones from your past. The ones from your past and present. Who sent you cards and music and emails and gifts in an unexpected-but-not-out-of-character rally of support for the new adventure you’ve started. Friends from long ago will be there, and you’ll wonder how they got your address and you’ll think about how many years it’s been since you’ve even talked to them. And you will weep at your sheer dumb luck for meeting all of these remarkable women along the way. And you’ll think damn, these are some incredible women.

You’ll think about those best friends from home, you know–the ones that know you best and love you anyway–and you’ll remember their concern when they didn’t hear from you right away when your child was born. You’ll remember how they celebrated his life, how they did anything they could think to do from afar–sent gifts and food, prayed and had masses dedicated in your son’s honor. You’ll remember the first time they met your son, how excited they were, how they never for a second treated him with anything but love. And you will remember those moments when you face times that are filled with anything but love. You will think about how never in a million years could you live without them, these friends, because they are as much your heart and soul as your children. And they have known your heart and soul longer than almost anyone. And you’ll cry again, this time because you can’t believe how lucky you are to have these women in your life. And you’ll think damn, these are some exceptional women.

You’ll think about your friends from work, the ones that haven’t known you as long but love you as much. Who opened their home on Christmas to take care of your daughter while you were giving birth. Who showed up with bags of clothes and goodies and rallied the troops to make sure you had everything you needed, from a working breast pump to time off work. You’ll think of the ones that sat with you during your son’s first surgery, held your hand, and prayed with you and for you when you were so terrified you couldn’t even stand it. You will shed tears of gratitude once again, unable to make sense of how you–you–keep hitting the jackpot when it comes to friends. And you will think damn, these are some remarkable women.

You will lock these moments up in a vault somewhere deep down because thinking of them will make you emotional–these women were among the first to love your son. They are a part of everything you will always remember about that time.

And your new friends, well, you’ll soon feel like you’ve always known them. Their friendship is different. You share something with them no one else understands. It’s almost like a secret. And you get to walk around smiling because you’ve been let in on it. You. Who would have thought? Certainly not you.

I’m not sure I ever thanked my friends properly for all the love and support when Eli was born and in all the months since. So, thank you. Thank you, friends. Thank you, amazing women. My life is better with you in it.