For the Hard Days

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.

Our Jericho

When Natalie was diagnosed the doctors told us she’d lose the ability to walk independently between the ages of 3 and 4; she’d be permanently in a power chair by kindergarten; that she was looking at a life span of early adulthood. I remember interrupting the doctor at that point and asking how Natalie was going to go to college if she was in a power chair and needed round the clock assistance. The doctor became silent and looked at me with concern.

I was holding two realities in my hand; the reality that I’d created through planning and dreaming, and the present reality. And they were incompatible in every way. The plans we had to expand our family, my plans for grad school and work, our vehicles, the two story home with the claw foot tub I’d dreamed of, going to sporting events and music recitals. It had all changed instantaneously.

My reality had changed, but God hadn’t.

I spent a good chunk of time wrestling with God, attempting to merge together the idea of what I thought my life would look like and the new reality in front of me. My living room floor often saw me at 3 am praying the Psalms, sitting in silence, wondering about the future of our family. How we were going to do this.

On one of those nights in my living room and in His mercy God showed me that Natalie would walk independently until she was nine. I believed Him. It was a mercy that allowed me to confidently enjoy small moments with her – climbing the stairs of a playground, a mile trek with her walker, the feeling of holding her hand, memorizing the five steps she took from her door to her bed at night, noticing how tall she’d gotten when she stood next to me.

Last fall, just before her tenth birthday, Natalie stopped walking independently. A bittersweet reminder that He is a God who can be trusted to keep His promises. When our lives are an ever changing mess, He is a constant.

And He’s been our constant. Our rock. He shows up and takes care of us, of Natalie, with the loving gentleness of a father. His provision going so far beyond what we could have ever done for ourselves. When we felt the pull to move from Colorado to Iowa be closer to family, a job for Dan opened up. When we felt led to a specific elementary school, friends offered to sell us their home so we could be in the district. Recently, when we needed an accessible van for Natalie friends and family pulled together and helped us find and purchase a van. Quail and mana.

Again, Dan and I are feeling God lead us in a direction that we know supersedes our abilities. We’ve realized that while our home has so far been conducive to Natalie’s needs it won’t remain that way for long. She is not able to maneuver in our 1040 square foot home with a power chair in a way to allows her independence. Our one bathroom is too small for a power chair and would need considerable modifications to be safe for her.  We either find ourselves carrying her in and out of the bathroom or her crawling across the bathroom floor.  We don’t have room for night time medical equipment near her bed without obstructing her ability to get out of bed. The hallway is narrow, as are the doors. Had we not received a tremendous amount of help from VGM Group and last summer we would still be struggling to just get her manual wheels around the house.

After looking at options to make our home accessible, we feel led to instead build a house that will meet our family’s needs. It’s an option that has high walls around it, causing it to feel far out of reach for our family, but we are confident that if that’s where God is leading us then he will provide what we need. It’s our Jericho, of sorts, and we are stepping into this reality with strength and courage, and hope in an ever present, never changing God.

But as for me and my house, we will serve the Lord.  

[Joshua 24:15]

To help our family along this path a Go Fund Me site has been set up, or you can stop into any Veridian Credit Union branch (Iowa) and contribute to the Natalie Olsen Benefit Account.