The other day, I took the boys to a really amazing park. As usual, Oliver (6) instantly made friends with another kid there. 

 

The other boy’s mom and I started talking, and unsurprisingly, they were also a homeschool family following Jesus. As we were talking, Willow got frustrated being in her stroller and wanted to get out to play with her brothers. 

 

The other mom said, “Oh, she wants to get out and run, huh?” 

 

I then began my usual Spina Bifida TED Talk to explain Willow’s situation. 

 

I truly love getting to share with people all about her disability because I’m a firm believer in the power of awareness when it comes to Willow’s birth defect. 

 

There are statistics floating around that say somewhere around 60% of unborn babies diagnosed with Spina Bifida in utero are aborted. 

 

And I truly think that is due to fear of the unknown. People don’t understand what a Spina Bifida diagnosis means—or what it doesn’t mean. 

 

Giving my little TED Talk isn’t always comfortable. I’m pretty unafraid to share the raw medical details about Spina Bifida, but it makes some people so uncomfortable. When I start off with, “…she’s paralyzed from the waist down…,” you should see some of the faces I get in response. People don’t know what to say or how to respond. It’s rare that someone presses in and says, “Tell me more about that,” or “How has that been for you? For your husband? For your boys?” 

 

Willow is more than her disability, and I am more than just a medical mom. But, like a bad haircut, this Spina Bifida diagnosis is going to be with us for a good while 😆 

 

So I want our family—and our support team—to embrace it. To press into the Spina Bifida community. To engage with this story of ours like it was written just for us. 

 

We believe that God is sovereign. He doesn’t make mistakes. Does that mean things are promised to get easier? No. 

 

My heart ruptured when I saw my baby girl wanting to be big and ambulatory like her brothers. She is going to miss out on good, fun things. She’s going to have infections or need surgeries in the future. We are in no way seasoned at this Spina Bifida thing, and I don’t know that we ever will be. 

 

But we’re committed. We’re committed to loving our kids. We’re committed to advocating for Willow and her needs. And we’re committed to following the Lord—even on the hard days, even when it doesn’t make sense and we wish things were different. Even when we watch her disappointment when she can’t do what her brothers can do. We stay committed. Because, as Peter says, “Lord, to whom else would we go?”