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.