Why I’m Nuts About Nathan – Celebrating National Down Syndrome Awareness Month

As a child, I did my share of daydreaming, trying to imagine what my life would be like when I hit the ripe old age of 30. Ha! Back then, 30 seemed so old. I imagined myself the author of a shelf full of bestselling novels, a world traveler, living in a beautiful loft apartment in Manhattan, or maybe in a rustic log cabin in the mountains somewhere.

Maybe both.

I like to have options.

One thing I could never quite imagine for myself though, was motherhood. It’s not that I never wanted kids, or that I had no experience with them. After spending much of my young adulthood babysitting, working for a local preschool, and hanging out with older friends who had children, I thought I knew just about everything I needed to know about children if I decided to have my own someday.

In February of 2010, I learned that no matter how much “experience” you have taking care of younger siblings or babysitting or working with children at a local school or church, there is no way it can prepare you for the moment you actually become a parent, the moment you see your child for the first time and hold him/her in your arms. What amazed me in that moment, and continues to amaze me every day since, is just how much one little person can change your entire world.

There was a time in my life, a particularly difficult period in my adolescence and young adulthood, that I can honestly say I am amazed that I survived at all. I almost didn’t, and I’ve got the scars to prove it. It wasn’t just a physical and emotional crisis. Spiritually, I was drowning. And it was the combination of it all that colored my world dark and gray and nearly killed me. It wasn’t until I began to turn my life around and began to heal that I was able to make sense of it all and understand that the hurt and the pain and struggles I was faced with were not some sort of cruel punishment, but that they were opportunities to learn and to grow and to make a positive change in the world around me. Looking back, I know for sure that I am a stronger, healthier, more open-minded and compassionate person because of the obstacles I had to overcome. Instead of seeing the world as a hard, cruel place, I see endless possibilities. I see beauty in the hardships. I see a larger order in the chaos.

See, the thing about kids is that they have a way of bringing life into tack sharp focus. Sure, you’re going to have a lot of days when you question your decisions and your ability to be a good parent, when you’re overcome with guilt and feel like a failure, but all it takes is one unbridled belly laugh, one temper tantrum, one toothless grin, one gasp of childish amazement to remind us that God is great and the world is an infinitely beautiful place.

Just a few short months after my own daughter was born, my friends Cat and Erik were in the hospital welcoming their own child, Nathan, into the world 3 1/2 weeks early. I waited for updates and prayed for the tiny boy who as fighting like a champ in the NICU.

Just a couple days after Nathan’s birth, Cat sent me a message to let me know that they had just gotten the results of a genetic test that confirmed that Nathan had Down Syndrome. I was shocked, because I hadn’t known there were any concerns about Nathan other than the usual issues that sometimes arise when a baby is born premature. What struck me immediately, though, was the way that both Cat and Erik and their families took the diagnosis in stride. Cat admitted that it scared her at first, but that she also knew immediately that there was no diagnosis in the world that could make her love her beautiful baby boy any less.

“Keep us and Nathan in your prayers,” Cat wrote to me in an email. “But there is no need to feel sorry for us! He is our gift from God and it is not a condition where people need to feel sorry, so spread that word for me!”

Her words still bring tears to my eyes, and in the 2 1/2 years since Nathan’s birth, Cat and Erik have been the ones spreading the word. In addition to Cat’s beautiful blog, Nuts About Nathan, she and Erik both post updates and links on their Facebook pages to help spread awareness about Down Syndrome, and have participated each year in the NYC Buddy Walk to raise money for the National Down Syndrome Society and celebrate Down Syndrome Awareness month in October. In addition, they continue to be amazing parents who love their child unconditionally and who are doing everything they can to help change people’s shortsighted view of what’s really important in life.

See, life is not about perfection, no matter what our media would like you to believe. Life is not about who has the most money, who owns the most “things”, or who is the smartest, fastest, or most beautiful. Those are self-imposed standards, made up and somehow adopted into our collective psyche. We’ve been brainwashed into thinking that we have to be perfect when really, there is no such thing. The world is a wonderfully imperfect place, and beauty, true beauty, is found in the imperfections. We were not created by accident or mere happenstance, and God certainly does not make mistakes. We are the ones who need to realize that we are more than a diagnosis. We are more than the number on the scale. More than the grade on the exam. We are more than the clothes we wear. More than the cars we drive. We are more than our jobs. More than our relationships. We are more than the labels, whether those labels are self-imposed or slapped on us by society.

What we are is wonderfully, awesomely human. We have been blessed with a very short life here on this earth. And as I look at Nathan and my own daughter’s sweet faces, I know that I want to make the most of it, and to love as much and spread as much joy as I can in the process.

Happy Hair Twin Day! – Kicking off Breast Cancer Awareness Month

Katie (then Luekens) was one of the first people I met at Concordia College when I arrived in August of 1998. During the flurry of Orientation, I walked into the Dean of Students office to have my ID photo taken. With a camera in her hands, Katie ushered me in and asked for my name.

“Lori Luethje,” I said. “It’s spelled L-U-E…”

I know you!” Katie squealed as she jotted my name down on a piece of paper. To this day, she is one of the only people I have ever known who could spell it right on her own.

“Well, I know your mom anyway,” Katie explained. “I love it when she calls. It’s always the exact same thing…” she paused, cleared her throat and softened her voice for the impression. “‘Hello. This is Jayne Luethje from Holdrege, Nebraska…’”

I laughed. The impression was spot on.

Katie snapped my picture mid-laugh and I spent the remainder of my college days carrying an ID with a goofy grinning photo staring back at me. Whenever anyone commented, I blamed Katie.

For the rest of my days as a student, Katie and I remained friends, and even spent two years living together in staff housing after I graduated and started working in Concordia’s Admission Office. I fell in love with her sweet dog Scherzo, and spent several holidays and vacations dog/housesitting while Katie traveled to out West to visit her family.

It’s easy to see why so many people are drawn to Katie like moths to a flame. She’s funny and feisty and full of energy. She’s one of those people who is such a natural performer it’s as if a spotlight follows her wherever she goes. And she still has one of the most beautiful voices I’ve ever heard. When I lived in New York, I used to count down the days to her performances, and make sure I sat near her in chapel so I could mouth the words to the hymns while I listened to her sing them.

When Katie was diagnosed with breast cancer, the thing I hated most (apart from seeing one of my dearest friends so ill) was not being able to physically be there for her. After all the years we’d spent being friends, hanging out, working together, venting to each other, and being roomies, the thousands of miles between us suddenly seemed to grow. I wanted to be able to drop by her house to see her, to hold her hand, hug her. Instead, I had to keep up with her through texts and photos, and send her all the positive thoughts and prayers I could from halfway across the country.

But I knew Katie is a fighter, and that she would never let a little cancer keep her down.

Earlier this year, Katie and I made a deal. I think it started one day when I made a comment on Facebook about wanting to cut my long hair, and Katie suggested I try her post-chemo hairstyle and we could be hair twins. I told Katie I would love to be her hair twin, and we settled on October 1 as our official Hair Twin Day, as a way to kick of Breast Cancer Awareness Month and celebrate Katie being a survivor.

It also gave me a little more time to grow my hair as long as possible for donation.

So, I made an appointment, and had Katie send over a few photos. A few people asked if I was nervous making such a drastic change. Nope. Not one bit. Not for my Katie.

Happy Hair Twin Day Roomie!

The one and only, Katie Luekens Chan Chee lookin’ fabulous as a redhead!
My before picture
My amazing hairstylist (and old high school friend) Desirae (Fowler) Tira
12 inches cut to donate, and a whole lot more on the floor
What’s this?
Bye bye hair! It’s off to be made into a wig that will be donated to one of the American Cancer Society’s wig banks.
I don’t think I know how to make a normal face in a photo, so I’ll just show you my hair
Pretty sure the neighbors thought I was nuts taking self-portraits on the front porch
It may be Breast Cancer Awareness month, but October is not the only time to show your support.
It’s a lot of hair, but it’s the least I can do.

To all my friends and family who have bravely battled cancer–whether breast, brain, throat or thyroid–you are loved. You are courageous and tenacious. You inspire me to be a better person, and to be thankful for every moment I get to spend on this earth.

Keep fighting. Keep fighting. Keep fighting.

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