Championing for the Cause

You know what they say about life… Carpe Diem!

Or, in this case, Carpe DM. As in “Dance Marathon”!
Our weekend was packed with out-of-town events focused on raising money for the Children’s Miracle Network! We headed to the University of Illinois on Saturday for the annual IlliniThon – a 12-hour dance marathon that started Saturday evening and lasted into the morning hours. (You can read about last year’s event here.)

Last year’s IlliniThon was a day-time event, whereas this year spanned the evening and early morning hours… and our family was getting a little tired by the time it even started (as evidenced by Connor’s super enthusiastic facial expression here). The opening ceremony started at 10 p.m. and then we spoke to the students, sharing about our experience at St. John’s Children’s Hospital and thanking them for their excitement and generosity in helping families like ours. By the time we got to bed, it was close to midnight, and we got up early the next morning to join in the final two hours of the party!

We felt exhausted, so I can only imagine how the students felt, because they literally STOOD for 12 straight hours for this cause. No sitting, no lying down – just standing, dancing, squatting down for a rest, but always on their feet throughout the entire night.

What is most moving to me each year is how invested these students are in providing for the children’s hospital, and I have no doubt that many of them will go on to continue helping kids, either through occupations like therapists or doctors, or fundraising in their communities. Their energy was electrifying, and there were lots of tears in the morning of the closing ceremony, as the college students, CMN staff, and CMN families joined in a big circle to sing and celebrate the end of this hugely successful event.

Some fellow NICU/CMN moms with our miracle girls!

  And WOW to this HUGE fundraising total!!!
After the Dance Marathon came to a close on Sunday morning, we switched gears and headed to another annual fundraiser, hosted by the university’s medical fraternity Phi Delta Epsilon. I was honored to get to share our family’s story prior to the keynote speaker, Dee Brown, who played basketball for the Illini when Evan and I were students. We were thrilled when this event soared past its goal to raise $16,000 for CMN!

The whole room loved when Brenna cheered “I L L!” on stage :)

I always enjoy telling our story, but especially to those in the medical field. I feel like it puts a face to a condition that they might only read about in school. I imagine that one day down the road, when these students are practicing physicians, they might treat a baby with ichthyosis or a similar condition, and they will have a much better understanding about this rare disorder. It is my hope that one of the reasons God has called us to share is to help another family or two in this indirect way.

When they see Brenna having fun and thriving, I hope people like these medical students can learn to see immense possibility within rare disease…

For at least half of the ride home on Sunday afternoon, Brenna chanted “For The Kids! FTK! For The Kids!,” also enlisting Connor in her cheers when he would indulge her demands to participate. And it made me realize that although I hope that through our year-long Children’s Miracle Network ambassadorship inspires others to action – to learn more about CMN and children’s hospitals, to donate, or to give back in some way – just two months into this, I can already see the direct positive effect on my own kids as they witness communities and groups doing big things in big and small ways to help care for families like ours and how much of a difference that truly makes.

Subscribe to my email list to download a list of my favorite children’s books about differences and disabilities!

Follow me:  Facebook | Pinterest | Twitter | Instagram

The perfect Mother’s Day gift. You’re welcome.

“Is it about your story?”

I am often asked this about my upcoming book, A Different Beautiful (which is now available for pre-order!) Yes, of course, I share my story, but it is about so much more than that. It is about many touching stories with the common theme of discovering a different kind of beautiful in life, the beauty not found in magazines but rather the tremendous beauty that allows us to live in purposeful joy and gratitude, even in struggles.

It’s about allowing  God to work in your heart so that you can love others well. It’s about realizing that appreciating each other’s differences means first celebrating our sameness.A Different Beautiful Cover

Mother’s Day, coming up in a few weeks, is the perfect occasion to offer encouragement and gratitude for all of the women in your life – related by blood or not – who give you strength, care, and support on a daily basis… and this Mother’s Day, my book A Different Beautiful offers just that.

Take a look at the book trailer below (and the family moments at the end – oh, my heart.)

A Different Beautiful is available now for pre-order, which means you can order it today and it will arrive on your doorstep on August 1! You can order from:

And I’m going to make this really easy for you – when you pre-order as a Mother’s Day gift for your wife, mom, mother-in-law, daughter and/or everyone else on your list, you can simply print out this little note below to include in your card, so they know it’s coming!

(the little black marks are crop lines so you know where to trim it).


By the time you give this thoughtful Mother’s Day gift, August will be less than 3 months away – perfect end-of-the-summer reading for the women in your life! I truly hope that you all are inspired and challenged by our stories and my message of celebrating a different beautiful.

Subscribe to my email list to download a list of my favorite children’s books about differences and disabilities!

Follow me:  Facebook | Pinterest | Twitter | Instagram