My Son Has Spina Bifida, and Life is Still Beautiful

This post has been in my drafts for about a year. I write it. Rewrite it. Then delete it again. There are no words that can help you. No words can heal you; not today. But here’s what my heart wants to tell you anyway:

You, sweet friend, are thought of every day. You’re in my thoughts. In my memories.

And in my love. I think of you. 

I think of you when I remember this day.

I think of you when I look at my sweet son.

And I think of you when I look toward the future.

But today, more than anything, I love you. I love you beyond your wildest dreams. I love you because of the beauty that will come from you.

Today, two years ago, I was you.

The tears you are crying, they were my tears. The confusion you feel, I felt it.

And the guilt. The guilt you hold in the depths of your heart, sweet mama, I know that guilt.

Was it something I did? Could I have done anything differently? These questions cut deep. They’re ugly. 

But the truth is simple: my son is exactly who he is supposed to be—and yours will be, too.

Hearing the words “Your son has spina bifida”—it’s life-changing.

You’ve heard the doctors talk a lot about folic acid. You’ve heard the statistics. You’ve been given your options.

Dear friend, now hear me. Hear the words that I hold close to my heart. 

I know the journey you are just now embarking on, and it’s scary. It’s hard. But mama, please know, it is so worth it. 

These are some dark days—these early days when everything you’ve been dreaming of seems to be turned upside down. 

But know you are about to discover that your world, even upside down, is beautiful. 

You’ll put on your research goggles. Your life maps will have to be revised. But the journey, this adventure through parenting, is worth the effort because that precious life inside of you will amaze you every step of the way. 

As my 19-month-old tugs on my pants leg, signing for milk and asking for cuddles from his wheelchair, I think of you. I think of how scared you must be of wheelchairs—because that was me. 

They’re unknown. They come with a stigma. 

But what if I tell you they come with discovery and learning and fun? What if I tell you they are a conversation starter, a friendship maker, a “cool factor” on the playground? 

Our son has learned more, progressed more, laughed more in the past few months since he learned to operate his wheelchair. He is happy. He plays. He is a normal little boy who happens to have spina bifida. 

Words can’t help you today, but one thing I want you to remember when the clouds start to dissipate and the sun starts to shine again . . . remember these words. 

Life doesn’t end with spina bifida. A new one is just beginning. 

A hard. Crazy. Emotional. Beautiful. Loving. Unique. Worth it. Life. 

It’s yours to enjoy. So enjoy it, because our kids, just like any others, are incredible. 

I love you, dear friend. 

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