One of my favorite parts of the day is after my boys have (finally) drifted off to sleep, and I get to spend a few minutes chatting with my girl. She tells me about her art projects – the ones she wants to start or the amazing creation she’ll make with the empty oatmeal container, duct tape, and feathers under the art desk that was formerly her homework desk. How we both love over-sized sweatshirts and the way Breathe Right strips make blue sparks as you open them. We talk about school, home, boys, and friends, and friends who are boys but not boyfriends. Exciting endeavors and disappointments.
Last night the conversation turned when I asked how she was feeling about SMA. She said she was feeling kind of bad about it because she can’t run like her friends. That they’re too fast for her power chair. That it’s hard sometimes to find a group to join. That she smiles anyway because no one is being mean and they’re just being normal, but it hurts sometimes.
Then she surprised me. She talked about how the unfairness of not being able to keep up with other kids at recess has been met on many occasions with the unrequested kindness from a friend. How Eleanor, in a moment of wisdom and gentleness, reminded an emotional Natalie that having SMA wasn’t her fault. How this mom’s prayers for good, solid friends for Natalie has been met each year, year after year.
I held back tears while she talked about how at the end of the hard days she makes a point to think of at least one reason she’s thankful for having SMA. I sat there and listened to her talk about how she’s so thankful she’s met Ali, and Jillian, and Haley, and Hannah and Riley. How she’s gotten to help fund raise, and likes having her family attend the MDA walks. She told me she liked how the other day I told her that I was a lucky mom to get to hold close and carry my daughter. I thought about how I’ve gotten to watch Dan give her piggy back rides to bed, and how her brothers (sometimes) hold open doors or press the automatic button for her. How even at large family gathering when there’s 40 people and she could easily get left behind by the other kids there was one waiting for her or looking out for her. How I’ve seen friends in our neighborhood, at our church and Natalie’s school, at the grocery store around the corner, the guys Dan lifts weights with, strangers even, an entire community converge to support our daughter and support our family.
So. This is my post for the bad days. The days when SMA is difficult. When she calls for help because she is about to collapse onto the ceramic tile. When she can’t crawl up into our bed anymore and needs us to lift her. When I watch her struggle with every ounce of will to take two steps without help. When I watch her watch our boys learn to jump. When she realizes that a one year old baby is physically stronger than her and nervously laughs it off. When I’m exhausted from stretches and massages, and respiratory therapy, and carrying from room to room. When winter means hunkering down so we stay healthy. When we get there and the parking lot hasn’t been plowed and we have to go home. When going out in public means being stared at. When every day is a test of endurance and I don’t realize it until the endurance has run dry.
This is the post I will return to so I remember that while SMA has brought on pain and difficulty it has also opened our eyes to the depth and width of beauty of this world. The warmth and love found in relationships. The power found in community. The indescribable profoundness of good friends.
That the light shines in the darkness,
And the darkness has not overcome it.
That His grace is enough;
That His strength is perfected in our weakness.