Augusta's 1st trip to the beach!

Can you tell?

People love babies. Okay, maybe not “all” people, but certainly a lot of them. I’m a baby lover myself. Even before I had two of my own, I couldn’t resist two chubby cheeks and a big slobbery grin. Sitting at a restaurant, I’d smile and wink at a baby at the next table. I’d pass a mom with a car seat on a grocery cart, and turn to sneak a look at the baby inside. Babies are cute. It’s that simple. But it wasn’t until I had babies of my own that I realized just how much attention they can draw.

Take our son Maverick for example. When he was an infant, I’d take him out with me, and people couldn’t get enough of him. I often heard the same comments. “He’s such a little man.” “Look at that hair!” “Oh my gosh, he’s the spitting image of your husband.” As a new mama for the first time, I basked in the attention. He was cute, still is, but of course I’m bias because I’m his mom. So when someone complimented me on how handsome a baby he was, I’d smile, say thank you, and move on. Simple as that. Then I had Augusta.

Augusta gets attention – a lot of it! If she could talk, I’m sure she’d tell you she knows just how Jennifer Aniston feels on the red carpet. I’m not kidding. A couple of weeks ago we were shopping at Macy’s and eight women – after four I started counting – yes, eight women approached me with “oohs” and “awes” over how cute she was. Don’t get me wrong, she is certainly adorable. She has those squeezable chubby cheeks, a smile that spreads a mile long, and a “look” that makes you feel like you’re the greatest thing that ever lived. With traits like that, it’s easy to fall in love with her. But eight women vying for her attention? That’s when I started to wonder why she was drawing so many admirers. And then it hit me...

When my husband walked through the door that evening my first words were,
“Ryan, can you tell Augusta has Down syndrome?”

I must have caught him off guard because his first response was, “What do you mean, can I tell she has Down syndrome?”

That’s when I added in the most serious tone I’d ever used, “If you were a perfect stranger, and you saw her in a store, would you know by looking at her that she has Down syndrome?”

“I don’t know, maybe,” he said.

I prodded, “Really, really, think about it. Can you tell?”

“I don’t know...I guess...well, maybe not,” he stammered.

The next few minutes may not seem like the most rational chain of events, but we found ourselves scouring through baby pictures of Maverick and comparing them to Augusta’s. I know, this probably sounds crazy, but when Augusta was first born, we didn’t “see” Down syndrome. It was the doctors and nurses that pointed out the “markers” as they called them – the space between her first two toes, the flattened face, the extra skin on her neck, and the crease on her palm. These were physical characteristics I never would have thought to look for. So if we didn’t see it, would someone not in the medical field see it?

Okay, at this point, you’re probably thinking, “Why the heck does it matter?” And you’re right. In the grand scheme of life, it doesn’t, but I couldn’t let it drop. For the next couple of weeks, whether I was at Target or having dinner at Chili’s, I kept wondering if people could tell she has Down syndrome. Let me make something clear, it’s not something I’m embarrassed about, I was just curious. And it’s not like I can go up to a perfect stranger and ask them if they notice anything about my daughter. I can imagine the awkward responses I would get.

It wasn’t until this past week that I got my answer. We were shopping at The Galleria in Nashville, Tennessee. (A break from the long car-ride on our vacation to Gulf Shores.) My husband had gone to get the car for us and my mom and I were standing outside with Maverick and Augusta. As we waited, we noticed a woman and what appeared to be her grandchild walking towards the mall. You’d notice this little girl from a mile away – hot pink Hello Kitty t-shirt, a black tutu, and polka-dot tights. I’m sure she’d be a perfect shopping partner for Augusta someday; she was the textbook definition of diva. Just as I was reminiscing on my Hello Kitty days, the little girl stopped to look at Augusta. Of course her grandma stopped as well, and they started commenting about how cute she was.

And then the grandma said the question that I had both feared and waited for these past couple of weeks. “Does she have Down syndrome?” At first, I couldn’t get a word out. I must have looked like a deer in headlights. Then I said, “Yes, she does.” The lady went on to share a story of a family friend who had Down syndrome and how he was just a joy to have in their lives. She must have said more, but I didn’t hear it. I was too stunned about what she just asked. After a few minutes, she walked away, her granddaughter skipping alongside her. And I just stood there, speechless. I couldn’t believe what had just happened. All this time I wondered if people could tell and here was this lady that just came right out and asked it. I wasn’t mad. I wasn’t offended. In fact, I was proud.

Proud. I can’t think of a better word to describe it. I’m proud to be Augusta’s mom. Proud to be a mom to a special needs child. Do I want people to know she has Down syndrome? Absolutely. Shortly after Augusta was born I read some statistics about the number of people who give their special needs baby up for adoption. Or the number of people who don’t even follow through with a pregnancy because they learn their baby has Down syndrome. And how if they are born, some parents are so ashamed that they never take their baby out in public. I don’t know how true those stories are, but just the thought of that brings tears to my eyes.

Which is exactly why I want people to know Augusta has Down syndrome. I want people to know she is perfect just the way God made her. Yes, the “special needs package” is sometimes hard, challenging, and emotionally exhausting. But it is nothing - absolutely nothing - compared to the joy I feel when she giggles, smiles, reaches out to hold her brother’s hand, spreads her arms out when she’s excited, or nuzzles into your neck for a snuggle. Just the other day she learned how to clap and I honestly felt like I was in the presence of a miracle.

So if you see her and I at Target, or music class, or at the pool, or a restaurant, come on over. Give her all the attention you want. Just be prepared for a big, slobbery, wet smooch. It’s her specialty right now. And you know what? That’s about as cute as babies come.

Augusta is my Holland

There is a story I have to share. Since Augusta’s birth, a lot of people have asked me what it’s like to have a child with Down syndrome. And honestly, I don’t even know where to begin. Sometimes I talk about the medical issues. Other times I mention her therapy sessions. But the truth is, what I’ve learned about my daughter can’t be found on WebMD or in a pamphlet about Down syndrome. That’s when I came across this story. In the world of special needs, it’s a story that parents have read dozens of times. And if they’re like me, it’s a story that is especially touching. So here’s what it’s like to walk in my shoes.


“Welcome to Holland” by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Having a child with special needs may not be what I planned, but I honestly believe sometimes God has a bigger plan for you. She is special in a way that can only be described as a miracle. The beauty of Holland – the windmills, the tulips, the Rembrandts – that’s our little Augusta. If anyone were to ask me why I fundraise, advocate, or rally for her, it’s because I want others to see the beauty I see...not just the Down syndrome.

Yes, our family life is different now. We have frequent doctor’s visits. We often travel 2-3 hours away to see doctors who specialize in Down syndrome. Therapists are in our home on a weekly basis. When we feed her, change her, or hold her, we are constantly aware of exercises we can do with her or special positions to put her in. We are starting to speak to her in sign language. We hold our breath waiting for blood results to come back that test for leukemia, celiac disease, and thyroid problems. Her future – where she will go to school, how kids will treat her, whether she’ll fall in love and get married – is never far from our mind. Those aren’t things we have to worry about with our son. The truth is, having a child with Down syndrome is different, but it’s certainly not the end of the world.

If anything, it’s just the beginning. Augusta has opened my eyes to so much. When I look at her, I see ability, not disability. Being upset about Augusta’s diagnosis isn’t productive. Yes, there are moments when I get sad or start to feel overwhelmed, but they’re few and far between. And they’re nothing compared to the moments we have every day – seeing her beautiful smile, listening to her giggle as Maverick pushes her in the swing, watching her sleep on Daddy’s chest, cuddling with her before bedtime, laughing at her as she blows raspberries with her rice cereal. It’s these moments that remind us that she is still our beautiful baby girl...just with an extra chromosome.

So yes, Augusta is my Holland. It’s not where I planned to go. It may not be Italy. In fact, it’s better. And I wouldn’t board a return-flight for anything.

Dear Augusta

So I pulled out Augusta’s baby book last night. Confession: she’s four months old and I am just now starting it. I’ve had good intentions. I have a “memory box” full of mementos I’ve collected since her birth – her wristband from the hospital, her birth announcement, First Christmas cards, newborn photos, and little odds and ends. But actually starting the baby book? It’s an item on my to-do list that is just now getting checked off.

As I sat on Augusta’s bedroom floor and flipped through the blank pages, the headings brought tears to my eyes. Visitors from the hospital. Photos of my baby shower. About Mommy and Daddy. First smile. Look how I’ve grown. I could picture in my mind exactly what I’m going to write and what pictures I’m going to use. I glanced down at Augusta on the floor next to me. Her big, blue eyes looked up at me as if to say, “Hi Mommy!” I thought to myself, “How do I begin to capture her cuteness in a book?” Then I turned to a page that has a little envelope glued to it. The heading – “Letter from Mommy.”

I was stumped. How in the world do I write a letter to Augusta that has everything I want to say? Where do I begin? How can I even start to explain the depth of my love for her? Do I tell her how much Ryan and I hoped and prayed for her? Do I tell her about the car wreck when I was nine months pregnant – and the guardian angel that must have been with us that day? Or do I share the little moments that mean so much – like cuddling when I get home from work, our nightly bubble bath where she burrows up on my chest, reading books while she and Maverick are nestled in my lap. Do I tell her what her favorites are right now like getting her hair brushed, licking the noses of her stuffed animals, and watching Maverick play with his cars? Do I explain that she’s special in a way that a shooting star is or a rainbow is after it rains? Do I tell her my hopes and dreams for her future? Do I assure her she can do whatever her heart desires and not to listen to anyone who tells her differently?

I know in my heart the answers to all of these questions. I want Augusta to know how much we love her and how she has opened our eyes to the beauty in this world. I’m nervous about writing such a powerful letter. It’s a way to record a piece of her history – a keepsake she’ll have forever. So here it goes. Oh, you might be wondering why I’m going to share such a personal message to my daughter with all of you. And this is why – I want the world to see Augusta as I see her – a beautiful little girl who has so many abilities and so much potential. I want the world to appreciate the beauty of our differences. I want the world to erase the stereotypes and ignorance and appreciate her for the wonderful little being God created. So open your heart and read carefully...

Dear Augusta,

I love you more than words can say. When God gave us you, He filled a place in my heart that I didn’t even know was empty. I am so blessed He chose me to be your mom. From even before you were born, I’ve loved you. I was scared at first, but I knew from the moment I looked in your eyes, I would do anything in the world to protect you. That is how much I love you.

At just four months old, you have changed my life and given me a purpose. With every “first” you have, I know I am in the presence of a miracle. Your first smile, your first roll from tummy to back, your first coo, and your first pedicure. (Yes, you and mommy got a pedicure together when you were just three months old.) Every moment like this is never taken for granted. The way your tiny hand grasps my finger. How when you smile your eyes squint into crescent moons. The way you kiss your Daddy and snuggle into his neck. And how you watch your brother wide-eyed as he plays with his cars. The way you coo at me when I’m brushing your tiny locks of hair and how you lick the noses on your stuffed animals. Because of you, I slow down, take a breath, and never take one moment for granted.

And just when I think life couldn’t get any sweeter, there’s a moment like the one I had this morning with you and Maverick nestled on my lap for a story. Or the moment you master one of your therapy exercises and your big brother yells, “Good job Gus!” The first few minutes when you wake up and you’re just stretching your arms out and gazing up at me while you nurse. The time each evening where we just spend snuggling, you burrowed into my neck. It’s moments like these that have changed me. They change the way I look at the world. The things that used to stress me out are just shrugged aside because all that matters is that we have each other.

You may be just a baby as I write this, but I have so many hopes and dreams for your future. Please know that you can do anything, absolutely anything your heart desires. Whether it’s playing the piano, doing gymnastics, or kicking a soccer ball, please know that your daddy, brother, and I will be cheering you on every step of the way. You are going to have hard times, challenging times, and times that almost get the best of you. But Augusta, know this. You can, will, and have overcome them. You are strong, I know this. Whatever cruelty, hardship, or prejudice you face, know in your heart that you are above that. I pray in my heart that you will never have to live one day without me...but if you do, please remember that you are never alone. There are so many people who love you and will fight for you every second of every day.

But even though there may be times that try your soul, I want you to know that there is good in this world. I want you to find beauty wherever you look. And with you, that’s never far. I want you to live a life full of love and laughter. A life that makes you feel complete. A life you can be proud of. I know in my heart, a life like this is possible because you are already living it. I am so proud of you Augusta and I am honored to be your mom.

With all my love,
Mommy

We've Already Won

What would you do if you won the lottery? It's fun for my husband and I to imagine what we would do if we won big. My answer usually revolves around being a stay-at-home mom, volunteering at local schools, and giving money to charity and our families. I don’t really think about the details, because after all, the chances of actually winning are pretty slim. But if you’d ask my husband, he has a serious plan if he ever won – retiring to a big house on a beach in Florida, playing golf at the world’s best courses, sharing our winnings with family, and taking a European cruise with our kids. It amuses me to hear him talk about this, because he gets so excited about it. That’s why it’s no surprise that I often find Powerball tickets in his car, in the laundry, or on the kitchen counter. He definitely doesn’t buy a ticket every single day, but I will occasionally find one. And when I do, I’ll joke that our chances are “one in millions” and his response is always the same, “Someone has to win, why shouldn’t it be us?”

So at this point, you’re probably wondering why I’m writing a blog entry about the lottery, when my intention was to share stories about raising a child with special needs. For you to fully understand, I’d have to share a conversation my husband and I had just the other day.

We were talking about how much our life has changed since Augusta was born three months ago. How therapy sessions, doctor’s visits, and consultations have become the norm for us. How every decision we make revolves around what is best for our kids, and questions about Augusta’s future are never far from our minds. How scared we are for Augusta’s surgery next week, whether insurance will pay for hearing aids if she needs them, and how she’ll be if she has to wear a helmet for the next few months. Overall, we have been so blessed with Augusta’s health, but sometimes it’s overwhelming and you just need a good cry session. And that’s when Ryan said the most powerful statement since our daughter was born, “You know what? I wouldn’t change her for a million dollars?” “Really?” I asked, “How about a billion? Or trillion for that matter?” “Nope, not a chance,” he firmly replied.

This comment coming from the passionate Powerball player? The one who has his winnings planned out to the very last dollar? Don’t get me wrong, I have never questioned Ryan’s love for our daughter. He is the one that, after her birth told me her diagnosis didn’t mean a thing – that we’d still love her with all our heart. But he’s definitely not as vocal about his reactions to the diagnosis, the financial aspect of things, and how it’s changed our family. He’s usually the quiet one, while I’m drilling the doctors with countless questions. When I’m upset over the seventh hearing test she has failed, he assures me that Augusta hears me with her heart. If I’m frustrated over not doing enough therapy exercises in one day, he reminds me she’s just a baby and the most important thing is to love and snuggle her.

But if you consider all the ways our life has changed since having a child with special needs, life would definitely be easier if we didn’t have a child with Down syndrome. So to hear him say he wouldn’t change her for a million dollars? Let’s just say I fell in love with him all over again.

The truth is...Augusta may not be the child we planned, but I firmly believe that sometimes God gives us things that are far better than we could have ever imagined. Yes, she has Down syndrome, but that’s how God made her. So why in the world would we want to change her? By changing her, we would take away all the things that make her special, that make her who she is - a beautiful baby girl, the best snuggle partner ever, a little sister who adores her big brother, an angel who has opened our eyes to the beauty in this world, a baby who loves taking bubble baths, a little fighter who tries so hard during therapy, a wide-eyed little wonder who is constantly watching everything around her, and an amazing gift that we have been given. The list could go on and on. So while life would definitely be easier if we didn’t have the challenges that go along with Down syndrome, it definitely wouldn’t be near as rewarding.

...So Ryan came home with another lottery ticket last night. This week’s prize is valued at $40 million. You never know, maybe next week we’ll be sailing off to Europe, watching Augusta and Maverick playing in the sand, or playing golf at Pebble Beach. You never know, anything can happen. After all, someone has to win, right? But even if our numbers don’t match up, that’s okay with me...because we’ve already won.

Fear

Before I had kids, I was fearless. Ripcord rides, reverse bungee jumping, parasailing, going to the top of the Eiffel Tower, cliff jumping, roller coasters – the bigger the thrill, the better. I had a sort of “to do” list in my lifetime, and I was bound and determined to cross off skydiving and hot-air balloon riding. Then I became a mom…and all of that changed. Forget jumping out of airplanes. It just wasn’t worth the risk of something bad happening to me and leaving my kids behind. And as far as the hot air balloon, just the thought of it sent my heart racing.

I don’t want to say I became a complete coward. After all, I was a mom. It’s just that when I had my son, the fears and “what-ifs” a new mom experiences overwhelmed me. Rushing him to the emergency room because he had a fever of 104. Checking on him a million times a night to make sure he was still breathing. Calling daycare from work just to make sure he was okay. It’s like the carefree spirit I had before had vanished. One scream, whimper, or loud cry, could send me into a panic.

However, it wasn’t until I had Augusta that I learned what real fear is. The kind of fear that brings tears to your eyes just from thinking about it. It’s what I felt when the doctor first told us our baby girl had Down syndrome. During the initial shock, my mind was racing. What will she be able to do? Can she ever get married and have kids of her own? Will kids tease her when she gets older? How will she learn to read? How will this affect her big brother? Is my marriage strong enough to endure the challenges of raising a child with special needs?

Just when I thought my life couldn’t get any scarier, I learned about the health risks associated with Down syndrome. And all of those things I feared after the initial diagnosis? Ha! They were nothing compared to the host of medical issues Augusta could face. Children with Down syndrome are at an increased risk of having a congenital heart defect, leukemia, hearing loss, hypertension, thyroid problems, vision loss, seizures, intestinal abnormalities, spine issues, and infections. It’s crazy to think one extra chromosome has that kind of power. In addition to the medical issues, kids with Down syndrome typically reach developmental milestones later. That means Augusta may have delays in crawling, walking, talking, feeding herself, and potty training.

When it comes to the developmental delays, I can handle that. Augusta will do all of the things her big brother does, just in her own time. But the thought of my baby girl having leukemia or some other life-threatening health issue? Unbearable. And just when I think there couldn’t possibly be anything scarier than all of that, I start thinking, “What if something happened to me? Who would love her like I do? Who would make sure she keeps all of her therapy appointments? Who would teach her how to walk, read, and swim? Who would look out for her best interests?” All of these questions leave me emotionally exhausted.

It wasn’t until one of Augusta’s first check-ups that I learned an invaluable lesson. I was voicing my fears to Augusta’s pediatrician when he said, “Kristan, it’s okay to love her and want to protect her. That’s part of being a mom. But at some point, you’re going to have to let go a little. You want her to be challenged and pushed…that’s how she’s going to learn new things.” When I first heard the words “let go” I thought it sounded harsh. Then I realized he was absolutely right. All of my fears were not only holding Augusta back, but me as well.

Augusta is two months old now. It’s been a few weeks since that initial conversation with our pediatrician about “letting go” and I must confess…I still get scared sometimes. I don’t think a mom can ever completely erase the fear she has for her children. But little by little, I’m trying to replace the fears and what-ifs with information and support. My husband and I have found a team of professionals we trust - her pediatrician, pediatric ENT, First Steps therapists, genetic specialist, social worker, and daycare teacher – and they are with us every step of the way. We have found other families of children with Down syndrome who are dealing with the same issues. We became members of the Down Syndrome Association of Greater St. Louis. And we have family and friends that continue to offer their love, support, and prayers. We may not be experts on Down syndrome yet, but we are learning as much as we can and trying to provide Augusta with the opportunities and experiences that will help her succeed.

Now that I spend less time worrying about everything that can go wrong, I have more time to focus on what is absolutely perfect. Like the adorable way Augusta stretches her arms out when I unwrap her swaddle blanket. The way she watches her big brother with eyes wide open and I just know she’s learning something new. How she pushes her cute little bottom up in the air during tummy time. The love in her eyes when she looks up at me during a feeding. How she burrows up on my chest during our nightly bubble bath. It’s all those beautiful little moments that make me wish I could make the time pass slower…to enjoy those moments for just a while longer…and make my kids not grow up so fast.

The hard truth is I don’t know exactly what Augusta’s future holds. Maybe she won’t take her first step until she is two. She may have to have hearing aids before she learns how to talk. It might take her a hundred tries before she can feed herself with a fork. Or she may continue to surprise us, just how she learned to roll over at seven weeks old and did tummy time for twenty minutes yesterday. We just don’t know. But what I do know for sure is this…I love her, she is my daughter, and I will do everything in my power to give her the life she deserves, a life full of love.

…So I read somewhere the other day that the theme park close to our home is getting a new ride this summer. It’s supposed to swing you more than 200 feet in the air and go as fast as 40 mph. It made me think back to my thrill-seeking days and it brought a smile to my face. Not because I couldn’t wait to ride it, but because I already have my adventure…and her name is Augusta.