Just Keep Livin’

In our modern age, and particularly in our American, culture we avoid death; we like to pretend we can somehow outwit the grim reaper – create a magical potion, or a pill, or a procedure that will enable us to live forever.

We’ve stuffed death into quiet convenient corners: hospice, ICU rooms, and nursing homes & then we fit the dying into our schedules as they prepare to leave this earth. Not a single one of us gets out of this grand and beautiful thing called life with breath in our lungs. Not a one.

This truth is deeply embedded in my soul after learning that death was imminent for my unborn baby who had experienced a stroke in utero and after lying beside my 33-year-old husband as cancer ravaged his body; a strong man affectionately known as Superman to those closest to him – and Superman died – the suffering of this earth & the beauty of the afterlife so translucent as he communicated with angels & those who’ve gone before.

Death will tap each of us on the shoulder. Maybe we’ll feel the tap, tap, tap from the devastating effects of cancer, or maybe an accident will bring life to a screeching halt, or possibly some new deadly disease will be the villain we’ve feared all along or perhaps we’ll be one of the lucky ones who passes away in our sleep – death by old age – but every single day we’re blessed with time, we also move one step closer to the clock striking midnight, with or without a magical potion.

And the only way to outsmart death is to live: eating, drinking, folding laundry, sweeping floors, reading bedtime stories, playing uno with our children, laughing, crying, and staying present with those we love because through movement, our choice to face another day, we honor the life still present in our lungs. We honor our Creator, we honor our lives, and we honor those who’ve already breathed their last.

Just Keep Livin’

If you would like to hear more of our family’s story, please check out my three books below!


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It’s something we often take for granted until we lose it, right?

Freedom to work
Freedom to vote
Freedom to worship
Freedom to choose how many children we have (or don’t have)
Freedom to marry who we want
Freedom to change things when they’re not working
Freedom to pursue our dreams!
Freedom to rest
Freedom to grieve
Freedom to celebrate!
Freedom to move, if we so choose
Freedom to reach our highest potential!
Freedom to live & breathe & be ourselves in whatever capacity we desire.


This freedom can be elusive for some –

Not entirely graspable –

Or palpable –

Or attainable.
Freedom for those of us with profoundly disabled children can look very different & not so “free.”
The inability to attend the local parade because of sights, sounds, & lack of adult changing tables.
Or the lack of job options that accommodate the demands of the caregiving life.
The hindrance of freedom to choose the firework show because of sensory overload.
The ache we feel as we decline a cookout invite because of inaccessibility.
Or the inability to rest because of constant fight or flight.
The divide & conquer with hotdogs & s’mores in our own backyard because of strict, immovable routines.
The fear of moving to a new state because we’ll lose our waiver spot.
The lack of communal worship because there are few special needs ministries.
The inability to vacation because of elopement & meltdowns.
The void of play because parks don’t spend taxpayer dollars on big kid options.
The isolation of home, which sometimes feels like a prison because the world is not made for children like ours.


It’s a gift that’s not guaranteed – not even in America.

Notice the families with needs.
Notice how your freedom might look different than theirs.
Notice & then do.
Do something to help them feel a little more free.
Do something to invite them in
or show them that you care.
Create a special needs ministry.
Reserve spaces of quiet at the local parade.
Set aside your fear & learn.
Ask questions.
Advocate for adult changing tables in public restrooms.
Offer respite.
At the very least, offer a meal.
Recognize that your freedom is not their freedom & then in gratefulness, act accordingly.

Happy (almost) 4th of July

God Bless America

Just Keep Livin’


To read more of our family’s story, check out my three books!


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A Glimpse – I Choose Hard

“You and Ryan seem so calm.”

This was a phrase I often heard when Luke was in PICU for almost 4 weeks during December 2019 and into January 2020.  We probably appeared calm because we’d experienced the worst-case scenario. Someone died on our watch in 2010. We’ve waded through the depths of hell and survived; not only survived but found immense joy on the other side of our grief, but that’s not the only reason.

What most people didn’t understand was how difficult normal Luke was at 15 years old. Baseline Luke was hard. The restlessness, constant high-pitched screams, puberty, incontinence, and the inability to verbalize what he wanted or even understand what he desired made it exhausting to raise this unique individual, but we did it. We went through the motions and thanked God for giving us a child who taught us numerous lessons through his fragile life. But it was still hard.

As Luke lay quietly sedated in PICU a few years ago, I was given a glimpse, a glimpse much like Nicholas Cage experienced in the beloved movie, Family Man. A 25-day glimpse of a different life.  Not a life in ICU with beeping machines and lifesaving equipment; instead, a life at home; away from the beeping machines; a life I returned to after Ryan relieved me at the hospital; a life with the other kids. A life where I awoke to the rising of the sun and not to my 15-year-old screaming over the baby monitor. A life where I had the freedom to run to the grocery store for milk and not worry about who would stay with Luke; a life where I didn’t have to constantly decipher what my non-verbal child wanted, and a life void of diapers and wheelchairs and walls smeared with food from wherever he ate his last meal.

An easier life. A life of peace or more peace than I was used to. A life of occasional silence. A life without Luke.

Struggle has a way of forcing beauty to the surface. The pink cactus, planted in a dry, parched land – sinks its roots deeply into the brittle soil; willing its way to the surface – beyond the menacing thorns, the bright pink petals unfold in majestic glory as the soul reaches for the sun.

The hard, holy treasures of life. Dull glittering nuggets that contain what really matters – unearthed through trauma and agonizing moans and breaths that can’t be released and heartache that brings a mama to her knees as she begs God to intervene and heal her son.

I wrestled with the Almighty for days as Luke lay in ICU. Weeping, moaning, begging – my thoughts scary, laced with guilt There’s peace, it’s quiet; my heart isn’t racing, I slept all night…

In the garden of Gethsemane, beside the cords and tubes and beeping machines, sweat dripping from my brow, pleading –

Father, grant me the strength to endure the hard, screaming, physically, emotionally, and spiritually draining cup you have asked of me to drink.  Please spare my son. I choose him. I choose the difficult path you have called of me.  I choose life. Give me the grace and strength to walk the road. Crucify every desire for prideful control. May I serve the least of these in your kingdom, and may I serve them joyfully.  Yet not my will, but yours be done. Luke 22

This is my road, my journey, and this is the way I must walk. I choose the narrow, parched path where only the pink petals bloom; the path lined with thorns and littered with dull and dirty nuggets – nuggets masking a priceless treasure beneath the smut and the grim, and the walls smeared with food. I choose hard and holy.  I choose Luke again and again and again.

Just keep livin.


To read more about our story, check out my three books below!


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The Caregiver Life

This January I committed to reading my Bible every day. Some days it’s easier than others, and some days I’ll head to bed, remember and quickly open it up! Honestly, I don’t pour over the Word for hours (or even an hour), but instead, I try to read at least a chapter a day and then read a passage out of my devotional book.

When I was pregnant with Luke, I was disappointed that I wouldn’t have quite the time to dedicate to my devotions after my special boy was born because he would require a lot of care with his disabilities. In response, the Lord whispered to my heart that “yes, devotional time is beneficial and should be pursued, but there would also be times when my worship primarily consists of the hard and holy work that he called me to do. Since that comforting revelation, I don’t approach devotions with as much black-and-white fervor as I might have in my younger years.

Last Monday morning, before the kids were awake, I sat down in my favorite oversized chair and opened my Bible. I was in Zephaniah, a book that I couldn’t tell you much about because it’s not highly quoted or studied. Zephaniah chapter 2. I stopped as I read verse 3.

Seek the Lord, all who are humble, and follow his commands. Seek to do what is right and to live humbly, perhaps, even yet, the Lord will protect you.

This was an admonishment straight from God to his chosen people. This was and is apparently the definition of what God desires from us, his people. The Lord clearly spells out what makes him smile, what lends to supernatural protection, and what is desired of us and it includes: to be humble, to seek to do what is right, and to obey.

That’s pretty simple.

That’s the message to those of us who claim to be Christ followers.

And you know what? That’s pretty much the definition of the caregiving life.

As caregivers, especially those of us who have been doing it for a long time, we often feel like our lives have very little meaning. We change diapers. We assist in mobility, we clean up lots of messes, and we sit in quiet spaces, or maybe not-so-quiet spaces if we’re dealing with aggression or behaviors. We humbly watch and assist our loved ones. We might feel like our lives are not amounting to much or don’t have a lot of purpose. Or maybe we feel like our loved one has held us back from pursuing our own passions or dreams. Or maybe, we’re too tired to think about it at all.

Let this verse bless you today as you serve those who need you. As you obey what the Lord has called of you in caring for someone. As you seek to do what is right by your family and by society at large. Know this, the Lord is pleased because you are doing exactly his will for your life. You are bringing glory to his name. You are making him smile.

Just Keep Livin.



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Lovin' With Grit and Grace Book Cover

Lovin' with Grit and Grace