Beauty and the Beast

All this pain, I wonder if I’ll ever find my way? I wonder if my life could really change at all?

Andrew started walking a few weeks ago – right before he turned 17 months; Natalie is slowly losing the ability to walk –as she turns 9. Watching the two progress in their own direction side by side is sometimes more than this mamma’s heart can take. And while we’ve never really made SMA a centerpiece in our home, we have been very open with Natalie about what will happen with her body as time goes on.

But I honestly didn’t know it was going to be this hard to watch it happen. I feel so helpless.

All this earth. Could all that is lost ever be found? Could a garden come up from this ground at all?

I was in my bedroom a few weeks ago when I heard an ominous thud in our hallway. I took a deep breath and opened my door to find Natalie face first on the carpet, legs tangled underneath her, fingers sprawled, arms in a defeated half push up. It was the 5th time since she’d come home a few hours prior and more than the dozenth time that day. I helped her sit up. “Mom? … Mom, I don’t want to grow up anymore.” I wiped smashed tears from her face and asked why. “I won’t be able to walk when I grow up, and I want to walk, Mom! I just want to walk! I don’t want SMA anymore!” Damnit. This is difficult. This is so difficult. We sat there in the hallway and cried together and talked about difficult things. I confessed that I missed holding her hand and walking together.

Friends, we clearly didn’t choose this path for our child or our family. The physical toll on her body and ours, the emotional weight that is heaped on her, the frustration she feels, the way it commands the helm of our decisions, the swings it takes at our marriage and our checking account. We are tired. All of us, tired. And there are many, and I mean so many days when I wish SMA was a person so I could take all this frustration, all of this not understanding why, all of this loss she feels, and reel it in his direction with my ring hand.

And through the passing of that thought my heart becomes embittered, and SMA wins, and hate wins. And I refuse, refuse, to allow that to happen. And I loosen my fist and hit my knees.

Don’t run from tests and hardships, brothers and sisters. As difficult as they are, you will ultimately find joy in them; if you embrace them, your faith will blossom under pressure and teach you true patience as you endure. And true patience brought on by endurance will equip you to complete the long journey and cross the finish line—mature, complete, and wanting nothing. -James 1:2-4

The kids and I were playing outside last week when Natalie called me over and asked me to help her up. Once up, she grabbed my hand to brace against and we started a slow walk along the sidewalk. “We’re doing it, Mom. Just like we used to.” That beautiful face smiling up at me, glowing.

We walked like that, hand in hand, for 2 glorious driveways. And I carried her close on the way home, and breathed deep the smell of her hair, and thanked God for such a wonderful gift as my girl. And I thanked God for the gift of SMA in our lives, or else I might not have recognized the absurd sweetness that is walking hand in hand with my child.

All around, hope is springing up from this old ground. Out of chaos life is being found in You.

She is Beauty, dancing through life with this beast of a disorder.

And so, dear friends, we are learning together to waltz through this mess. To not run from or fight against the hardship, but to see the beauty that can be made out of us…out of our mess, out of the dust…if we allow it.

You make beautiful things. You make beautiful things out of the dust.
You make beautiful things.

You make beautiful things out of us.

(Song Lyrics: Beautiful Things, Gungor)