I Heard the Bells

stockings

This time of year tends to stir something deep within me. A beautiful season of old dead ground washed in white, moonlight dancing in tones of blue across fields. Anticipating the celebration of the birth of God in flesh, the salvation of His beloveds.

:::    I heard the bells on Christmas day
:::    Their old familiar carols play,                  
:::    And wild and sweet the words repeat   
:::    Of peace on earth, good will to men     

But it seems this time of year is also disproportionately scored with deep wounds and the acute ache of grief.

Two dear friends marked the anniversary of the day they gave birth far too soon to babies who would never take a breath on this earth. The third loss for one the fourth the other. Another friend slept in a hospital with her already medically fragile child was now hooked up to wires and observed by doctors; one life altering diagnosis already seemed like too much, but two? Another said goodbye to the first man she loved, the man who raised her and taught her to conquer her fears, and who stood by she and her husband, half a decade earlier, when they said goodbye to their own child. A close friend currently waits for pictures from the adoptive parents of her very first grandchild, knowing it’s what was best, still hurt by the knowing. And still another family prays for a prodigal daughter, bandaging wounds from the leaving, putting up stockings and buying gifts without knowing if they’ll be enjoyed or opened. All of them keenly aware of how incongruent their circumstances feel in a season thick with the promise of hope and joy.

:::    I thought how, as the day had come,
:::    The belfries of all Christendom
:::    Had rolled along th’ unbroken song
:::    Of Peace on earth, good will to men

It was a Sunday morning, and I was sitting on the floor of my daughter’s room, holding her while she told me with clenched fists and in between sobs how her whole body has been tired for weeks. How it’s not just her legs or the end of long days anymore but sometimes getting out of bed in the morning is difficult. How the heavy blankets that keep her small body warm also make it difficult to roll over at night. That her head feels heavier than it used to, and her neck needs a break more often. That she slouches because her muscles can’t support her sitting upright for a whole day anymore. That she’s sad and angry that her condition is getting worse and she wants me to make it stop.

I held her and thought about what it would be like to be emotionally filleted, and sad, and angry, and wanting answers, and trapped in a failing body, and eleven years old.

I wanted to make it better right then. With every ounce of me I wanted to say something beautiful or do something to make it stop for her. But I knew I couldn’t. I just told her I was sorry, so sorry, that this was happening, that I love her, and that God loves so, so deeply, and he hurts with her too.

:::    And in despair I bowed my head
:::    “There is no peace on earth,” I said,
:::    “For hate is strong and mocks the song
:::    Of peace on earth, good will to men.”

And an hour later there we were, positioned in the back at church. She sat reclined in her power chair, eyes still puffy and red. I glanced over and smiled at the sight of her wild and soft curls. A quiet glimpse of her defiant and loving spirit.

Before I even realized it, our pastor was speaking directly into our mess. I can’t help but love it when God does that. When he prepares a way long before you even realize one is needed. How he does it in a way you could never do on your own. How nothing I could have said to my daughter while she sat crumpled on her floor even compared to what God would speak into her heart and my mama heart that morning. How all things, all of them, work for His good.

:::    Then pealed the bells more loud and deep:
:::    “God is not dead, nor doth He sleep;
:::    The wrong shall fail, the right prevail
:::    With peace on earth, good will to men.

So, we sat together and she looked up every verse and read them and followed along with the sermon. And we talked later about what was said; that hope is trust in the promises and character of God and not our circumstances, and how God invades the mess – our mess , that there is hope because Jesus Christ is with us and because our sins are forgiven.

:::    Till ringing, singing on its way
:::    The world revolved from night to day,
:::    A voice, a chime, a chant sublime
:::    Of peace on earth, good will to men.

When there is no sight to the end of pain and wondering if He is even listening, He carefully leads with one hand and carves a path through the wrong with the other. During long, sleepless nights of asking, “why?” He steadily revolves the world from night to day. When the outlook of our world is blanketed in the confusion of conflict, He offers a place of deep, abiding peace.

Our hope is in the unchanging promise, the gift of God in flesh, the beginning of making our relationship right. And that means he’s there in places that should have been. And he’s there in the waiting and the uncertainty. He’s there for the celebration and deep hurt and memories. He’s in the complicated and the sting of unconditional. And he awaits with joy to celebrate the wanderer.

He is a good God. A good Father. Adonai. He makes a way for those who love Him when it seems like there is none. While you’re running toward freedom, he’s preparing to part waters. While you’re wandering in what feels like a desert he’s often providing a shield from the hot sun and warmth and protection at night. When you feel like you’re running in circles, he’s bringing down walls.

While you were not even yet born, he was making a way to Heaven.

:::    A voice, a chime, a chant sublime
:::    Of peace on earth, good will to men.

Lovegood

racecar

I pulled into the driveway and opened the door to our one stall garage: a round, metal garbage can with six foot tall wooden dowels sticking out of it, cans of spray paint, a few rolls of duct tape. I tilted my head to the side, closed one eye, then nodded. Seemed about right.

By the time I woke up the following morning, the black and red nose of the Hogwarts Express was sitting in our kitchen.

Every year he does this. It’s almost like the build of anticipation to Christmas morning. A Halloween costume idea sparks then simmers around for a few weeks. The day before there’s nothing but a hodgepodge of random hardware store items in our garage. The next morning we all wake to the smell of spray paint and the creative product of a devoted dad. I just shake my head, smile, and say, “I don’t know how you do it.”

The night before I was sitting on my living room floor stitching the torn elastic of a store-bought Batman mask and cursing at a super glue bottle. Somehow I’d managed to glue my sleeve to my hand…and some paper to my fingers…and my fingers to my fingers. But Luna Lovegood just isn’t Luna Lovegood without her Spectrespects and a Quibbler Magazine. So I cut and glued and ooops’d and oh-welled and tried to remember not to touch my hair with glue-fingers.  Arts and crafts are not my thing.

scratch

But it’s why we make a good team. Dan is sporadic, and I am planned. Change is an adventure to him and always makes me hesitate. He is creative and a builder, and I am a dreamer and a re-arranger. I superglue my sleeve to my hand and he recreates the Hogwarts Express from a literal garbage can overnight. And if I’m honest, I’m a tad jealous of his ability to tape a perfectly straight line without having to rip and redo a few dozen times.

I’m also in awe of the way he loves his little girl. Every year we run out of time to transform Natalie’s wheels into part of her costume. And every year he somehow finds extra time – usually into the late hours of the night. Sometimes into the early hours of the morning. This year was no exception. He worked an almost 14hour day then came home and stayed up until 2am measuring and sawing and painting and taping perfectly straight lines.

A racecar, a storm-spotting news van, a replica of a local cupcakery food truck, and this year the Hogwarts Express taking Luna Lovegood to her friends. Labors of love from a good man who knows each of his kids and meets them in their own unique spot. Rough housing and wrestling with Andrew, including Isaiah on projects and offering kind words, creating and imagining with Natalie.

We don’t often get this parenting thing right. We make a mess, fumble through it, muddle around, apologize for yelling and being grumpy before coffee and after bedtime, lose our patience, forget important things. But then there are times when we get to revel in the moments. When the labor and toiling culminate in tiny feet clambering toward the door with yells of “daddy’s home!” or a six-year-old who grabs his toolbox, pulls out his screw driver, and changes the batteries in a toy, or a girl who wakes up with excitement because today she isn’t in a wheelchair; today she’s riding the Hogwart’s Express.

luna-lovegood

Strength & Heart

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I honestly thought I’d skirt the busyness of being a parent to a child with a disability; she plateaued for so long. But the piles of laundry and paperwork, and number of people I need to say “sorry” to for not getting back to them are ever growing and would suggest she is no longer on a plateau, and I’m in over my head.

Paperwork and phone calls for waiver services, two applications for grants, three write-ups about our family, a medical equipment delivery, deciding between AFO’s and SMO’s, driving to and from land PT and water PT, squeezing in PT at home every night. Listening to make sure she’s clearing everything when she coughs or clears her throat (is she working too hard to get all that junk out? Hard to tell. Probably better safe than sorry). Convincing her to use her Cough Assist. Monitoring to make sure she keeps her body temp up now that it’s cold out. Getting out of bed because I forgot to charge her power chair and the battery is low. Scrambling to pick up her brother’s toys because she’s getting off of the school bus and wheelchairs weren’t meant to roll over Batman or Legos. Carrying her because she overdid it and her hip is sore and her arm collapsed while she was crawling, overextending her wrist. Feeling my own vertebrae grind against each other. Communicating with doctors, and PTs, and teachers because there was a change. Forgetting to communicate the same things with my husband. Having to strategize which wheelchair, if any, to take to a friend’s house, how to get the chair in and out of the house, wondering whether they have a bathroom on the main floor that she can access. Tearing up because her friend’s dad thought ahead to mow and make sure she had a way into their home before she came over.

Hoping next week will look different, maybe be a little slower, less intense. Knowing it probably won’t.

Remembering things could be different. She’s verbal, and can move on her own, and can breathe and eat on her own. That getting to use a wheel chair is a privilege because it means she’s not supine all day. I’ve never had to revive her or clear her airway.

Trying to give myself some grace.

But it’s hard to give grace when there’s no rest.


Come to me, all you who are weary and burdened, and I will give you rest.
Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.
For my yoke is easy and my burden is light.
[ matthew 11:28-30 ]


We had a stander delivered from the MDA loan closet today. It will allow Natalie the ability to stand up for long periods of time which can prevent contractures, help preserve core muscles, delay scoliosis, and take pressure off of her lower back. A blessing, for sure. But I hadn’t counted on the flood of emotions that bombarded me after the delivery –  when it was just me, my three-year-old, and another giant piece of mobility equipment in our living room. A visual admission that her condition is deteriorating. That she cannot walk. That she cannot stand. That her arms are next. That I am powerless.

When life is frazzling and doesn’t cease, even for a moment, my default is to seek the physical, the present, the tangible – rest counted in minutes of peace and quiet, a swept floor, a cup of coffee, check marks on my to-do list. They offer immediate, but temporary relief, which is what makes them so addicting, and my default. I come back to them again and again to find relief, to find peace. They always deliver, and they always fade, leaving me seeking more.

The woman at the well in John knew about looking for relief. I don’t know what she sought relief from but it was clear where she was going to get it. I also know that she and I are not so different. I know that we both need rest for our tired souls. I know we both keep going to the wrong places to find it.


Jesus answered, “Everyone who drinks this water will be thirsty again, but whoever drinks the water I give them will never thirst.
Indeed, the water I give them will become in them a spring of water
welling up to eternal life.”
[ john 4:13-14 ]


So, sitting on the edge of my bed, through blurry eyes, I read and prayed through Psalm 27.


I am pleading with the Eternal for this one thing,
my soul’s desire:
To live with Him all of my days—
in the shadow of His temple,
To behold His beauty and ponder His ways in the company of His people.
His house is my shelter and secret retreat.
It is there I find peace in the midst of storm and turmoil.
Safety sits with me in the hiding place of God.
He will set me on a rock, high above the fray

…I remain confident of this:
I will see the goodness of the Lord
in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord.
[ psalm 27:4-5, 13-14 ]


Behold, beauty, ponder, shelter, retreat, peace, safety, hiding place, above. Something about those words still my soul in a way that the tangible things here on Earth just cannot.

A beautiful reminder that the corrosiveness of disease, of SMA, cannot block out Eternal Light. And so we will continue to wade through the mess of laundry baskets, and crumby floors, and giant equipment squeezed into small spaces, and messy emotions and relationships. And we will do it all with strength, and heart, while waiting on the Lord.

To my kids’ teachers

Hey there,

School is starting soon. Well, at least for the kids. For you summer break probably looks more like a yield sign than the red and green of a stoplight as it does for us – enough to pause and regroup and regather, to reassemble lesson plans and inventory books and supplies, to write 25 new names on 25 new desk tags and 25 cubbies and coat hooks and lines in a grade book.

Before we get caught in the whirl of a new year, I want you to know something: Our family is rooting for you. We’re praying for you. We are thankful to the core for you.

Teaching is tough. It requires thick skin and a tender heart; it asks that you simultaneously push our kids toward greatness while protecting them from undue pressures; it asks that you manage the ever changing intellectual and emotional infrastructure of 25 unique kids and make connections with 25 different families with 25 different structures. And sometimes it may feel like you’re expected to move mountains. It’s a lot.

And that’s why we want you to know that we’re together in this together.

There are 180 days of school between now and the end of the year. One hundred eighty opportunities to pour into the kids placed in front of you. One hundred eighty times to move them, one degree at a time, from where they are to where they could be. From timid to courageous, from “I can’t,” to “I can,” from fearing math to helping his math buddy learn a new skill, from friendless to belonging, from, bully to compassionate.

Just one degree a day. A gentle turn around. Two encouraging hands on their shoulders, guiding them.

Some days it will feel like stalling or even backwards progress. Some days it will look more like discipline and will take more than its share of energy from all of us. Some days you might even wonder why you tried or if you failed. But I think if we’re in the mess together, sorting it out, turning it around, muddling through it together, we can make it happen one degree at a time.

I’ve watched this magic in my own kids as they’ve grown and matured in your classrooms – how our oldest struggled to feel capable in math and suddenly “got it,” or when you helped her maneuver a difficult friendship, or how your compassion and positivity has helped her deal with disability and loss; how our middle one gained confidence as he gained skills and progressed through speech therapy. You were there, not just cheering for them from stands, but in there with them, coaching them, sometimes bandaging them, turning them a degree, and sending them back out there to try again.

So on the first day, or after the first week, or if your classroom is stacked to the brim with 8 IEP’s and behavior plans, or you’re overwhelmed with assessments, or have that kid in your classroom all.year.long, remember:

One degree

One day

Together.

“Be not afraid of going slowly. Be afraid only of standing still.” – Chinese Proverb

 

 

 

The One I Love

He’s our youngest. Our grand finale. The baby of the family. 

 

And he’s trouble. 

 

From the moment his feet hit the floor to the moment his eyes close: trouble. 

 

And after only 3 years of trouble, I’m a tired mama. 

 

He’s the kid who dumps my coffee all over his sister and her new power wheelchair, then the table, then the floor. The kid who stands on the table to look at his havoc with a victorious grin. The one who loudly refuses to get dressed like his clothes are made from pine needles. The boy who, while waiting at his brother’s Tball game, grins at a cute little girl just before chucking a handful of rocks in her face. He’s the wee precious one who chases his brother, trying to hit him while his brother yells, “In your anger do not sin! In your anger do not sin! You is sinning! In your anger DO.NOT.SIN!!!” The cherub who hits his sister in the head, goes to time out and apologizes, then hits her again. Then again. The creative inventor who sees board game pieces and immediately thinks they would do much better if only they were floating in a cup of ice water. The curious little monkey who pulls 3700 tissues from a tissue box then throws them behind a lamp that’s behind a chair and can only be accessed by a 3ft tall toddler. The little brother who attempts to throw a battery operated car into his brother’s bath water, and when his plan is thwarted, chooses instead to throw in bath towels instead.

 

This, all of this, in one day. One.

 

He also happens to be the boy with eyes like mine who curls up in my lap with his blankie at the end of the day and rests his head on my leg and looks at me and says, “lub you mommy,” then falls asleep with his arms wrapped around my leg while I melt into a pool of feelings.

 

He brings me to the edge of insanity and back almost every day, several times a day. 

 

And I love him with a depth and fierceness I can’t explain. A love that, given the chance, would choose him again and again even if I’d had the foresight to know he’d be trouble. A love that would see him and smile and say, “That one. Right there. That’s my kid. The one I want. That’s the one I love.” 

 

I feel like that is how God sees us: disobedient mess makers, hell-bent on running away and running amok, blissfully naive to the catastrophe we’re creating. Mess makers who, at the end of the day or the season or life, curl up in His word or in His presence or in prayer, wrap our arms around His Truth, and rest in His love. 

A love that sees our brokenness and wandering. The hurtful words and lies that fall from our mouths in moments of pride and anger. The ungrateful heart as we look with envy at our neighbor’s new car or friend’s Facebook pictures. The gossip we share, the judgement we pass too quickly, the forgiveness we withhold.

A love that chooses us, knowing full-well what we are capable of, how we will break each other and His heart, a fierce and deep love that would see us and smile and say, “That one. Right there. That’s my kid. The one I want. The one I love.”

 

He sees you like that. Even when you run. Even when you fall apart. You belong to Him. He chooses you when you still don’t yet choose Him. And He’ll choose you again and again for an eternity of tomorrow’s. 

Long before he laid down earth’s foundations, he had us in mind, had settled on us as the focus of his love, to be made whole and holy by his love.

Long, long ago he decided to adopt us into his family through Jesus Christ. (What pleasure he took in planning this!) He wanted us to enter into the celebration of his lavish gift-giving by the hand of his beloved Son. ephesians 1:4-6 (msg)

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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.