My mother is still here—

at least that’s what people say.

Her body sits in the chair across the room,

the same hands folded in her lap,

the same face I’ve known my whole life.

But the woman who filled her house

with plans and lists and laughter

is slowly slipping somewhere

I cannot follow.

Dementia is not a sudden loss.

It is a quiet fading.

A memory misplaced here,

a question repeated there,

a name forgotten,

a story unfinished.

Each day

another small piece

drifts away.

Once, she did everything.

She ran the house

like a steady heartbeat —

meals on the table,

clothes folded warm from the dryer,

the iron going as the Guiding Light

played in the background.

She knew where everything belonged.

Now she looks at simple items

like they are something unfamiliar.

She cannot remember how to stand.

How to shower.

How to function.

The woman who once carried us all

now leans on me

for everything.

I guide her steps everywhere she goes.

I help her dress.

I tuck her into bed.

I answer the same questions

again and again. And again.

Some days

I feel more like a parent

than a daughter.

Sometimes I sit across from her

and it feels like I am living

with a stranger

wearing my mother’s face.

Her eyes pass over me

without recognition.

Her words wander without

finishing a thought.

She is lost somewhere

between yesterday and a place

no one else can reach.

And then,

every once in a while,

the fog lifts.

She looks at me—

really looks.

She says my name

the way she used to.

And for one brief moment

my mother comes back.

Just long enough

to remind me

who she was.

And how much

I miss her

even while she is still here.

Living right down the hall.

The hardest part

is remembering

who she used to be.

The strong one.

The capable one.

The woman who carried us all

through sickness, bills, broken appliances,

and ordinary chaos.

Even cancer.

She did everything.

Everything.

And now

she depends on me

for everything.

Life has quietly

turned itself upside down.

Roles have been reversed.

And I hate it.

But I love her.

I want my mom back.

I don’t want to be a mom to my mom.

But this is where we are.

So I will remember for both of us.

Remember the woman that is still inside.

Have unwrapped gifts.

✔️ Check.

Left several still proudly living in boxes and plastic bags.

Buy groceries, but do not cook them.

✔️ Check.

Thankful my morning sick, wiped out, pregnant daughter with three little boys brought food. Still not sure how she does it.

Have family over anyway.

✔️ Check.

With gifts half-wrapped, half-hidden, and a bit of disappointment in my lack of time management.

Ensure the house is a total disaster when everyone arrives.

✔️ Check.

Think holiday chaos chic. That makes it sound so much nicer than stuff everywhere.

Catch the flu.

✔️ Check.

Timing? Impeccable.

Add a terrible UTI.

✔️ Check.

Why not? Why would I ever consider just one illness? But I got a pretty new Stanley to drink my water. I’m fancy when hydrating now.

Include a painful, open wound.

✔️ Check.

Details unnecessary. Trauma sufficient.

Sprinkle in fever and chills.

✔️ Check.

Festive, really. At least my son’s family gave me a new photo blanket to cover up with as my teeth chattered.

Add diarrhea. Why not?

✔️ Check.

It is the gift that keeps on giving and gives no warning so it’s always a surprise! Whoo Hoo!

Spend most of Christmas day unable to leave the chair or even fully wake up.

✔️ Check.

But still hear laughter, conversations, and cousins playing together.

And it was beautiful background music as I dozed.

Now give the flu to your spouse.

✔️ Check.

Actually not to nitpick, he gave it to me. But we are down for the count together.

For extra chaos, give the flu to your elderly mom with Parkinson’s Disease.

✔️ Check.

Because caregiving for someone seriously ill while seriously ill yourself builds character. Or breaks you. Or both.

Watch your family step up and do everything.

✔️ Check.

Cook. Wrap. Caretake.

Feel sad yet overwhelmingly grateful at the same time. I have the best family. My sons, daughter, and in-law kiddos truly stepped up when I couldn’t.

Have your mom become unable to sit up or stand, confused, and incoherent.

✔️ Check.

This was hard.

Call your brother, desperate for help.

✔️ Check.

No pride left. Just need.

Have an ambulance take your mom to the hospital.

✔️ Check.

Admitted. Stabilized.

Be too sick to visit her, knowing she’s confused and likely wondering where you are.

✔️ Check.

This one doesn’t get a joke. Please pray for her.

Feel terrible but also thankful because you truly could not have cared for her.

✔️ Check.

I’m learning you can hold two different feelings.

Add her faithful aide to the flu list.

✔️ Check.

I’m so sorry. Truly. Not the best gift I’ve given.

Four days after Christmas still have unopened gifts.

✔️ Check.

But Christmas does not come with an expiration date.

Pray for a redo Christmas in a few days.

⬜ Not checked yet.

Hope pending.

Write a blog because your life is always CRAZY.

✔️ Check.

We all know this is how I process my life. And if we don’t find humor or joy in the hard, then it just becomes too hard to carry.

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This wasn’t the Christmas I had planned or imagined for the last month. I didn’t host the way I wanted to, I didn’t give the way I hoped to, and I didn’t even fully participate the way I normally do. Most of the day I barely left the chair or fully woke up.

But from that chair, I heard my family laughing, talking, and eating together. I heard life happening without me having to manage it or hold it together. And that mattered more than I expected. I cherish the moments of my family being together under my roof. I treasure hearing my adult children and grandchildren enjoying one another. I hold these moments close to my heart as a Mom.

It also reminded me that Christmas was never meant to be about everything going right. The first Christmas was messy, unexpected, and exhausting. God didn’t wait for things to be calm or impressive before showing up. He came right into the middle of weakness, need, and chaos. Jesus never came for perfect, polished, or put together. (Take a moment to breathe a sigh of relief.) But He always shows up in the disorderly, mucky parts of people’s lives and makes them beautiful.

It’s why people didn’t recognize Jesus as Savior. God seems to like an upside-down Kingdom. He sent a baby, not a Warrior. He revealed His son to shepherds, not kings. His son was born in a stable, not a palace. In a manger, not a throne. His parents were poor, not wealthy. His birth arrived quietly, not to applause. I love that about Him.

This year, I didn’t have much to offer. But maybe that’s the point. That’s where God meets us. His beauty isn’t revealed in flawless moments, but in the imperfect ones where His glory truly can shine.

I still hope we get a redo Christmas in a few days that looks a little more like our traditional Christmas. I hope my mom continues to recover. I hope our bodies heal. But I’m holding onto the quiet truth that even this version of Christmas counted. And I found a lot of it to be beautiful.

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Except maybe for the diarrhea. That’s the worst.

Some weeks go somewhat normal, well, at least “normal” for me, which is already its own special category of chaos. And then there are weeks like last one, where I’m convinced I landed smack dab in an episode of “Punk’d.”

I half-expected someone from my family (probably Zach, Danielle, or Jaiden) to pop out and yell, “You’ve been Punk’d!” Cameras, Ashton Kutcher, the whole crew. But nope. No prank show. No hidden camera. Just a fairly typical day in the circus that is my life.

It all started after a busy day working in the library and kicking off the Scholastic Book Fair. I came home tired but determined to take my mom to our weekly Bible study. I rushed through dinner, threw on leggings and a sweatshirt, got Mom into the van as Steve pressed the ramp button when the ramp said, “I think I shall take the night off.”

It simply would not budge. He tried the manual override, our “in case of emergency back-up,” and even that decided to take a vacation. It just sat there like, “Yeah… nope. I’m off the clock too.”

In the end, Steve took my mom to Bible study while I stayed home. I’ll be honest, I secretly enjoyed my very rare time alone. I love Jesus and the ladies at our study, but that unexpected hour of quiet felt downright sacred.

ONE hour later, I was sitting peacefully in my wheelchair when suddenly… it MOVED.

Straight up.

Raising me upward.

BY ITSELF.

Then it tilts me back like I’m about to be launched into space. NASA, if you’re hiring, my chair is apparently ready for the paraplegic tour.

So there I am, arms flailing, feet in the air, yelling, “WHAT IS HAPPENING?!” before it finally dawns on me to hit the power button and end the spontaneous wheelchair uprising. Because nothing says “relaxing evening at home” like being attacked by your own mobility device.

Now I’m stuck in the air like I’m sitting in the world’s worst recliner, no longer comfortable but contorting my body into shapes no disabled, chubby woman should ever attempt. I’m pretty sure Cirque du Soleil would’ve taken one look at me and said, “Ma’am… that is not in the choreography. And let’s not even attempt to go to wardrobe with the angles we are viewing.”

Seriously, was I being Punk’d?

My chair fortunately still drove so I went to my bedroom to roll onto my bed. Let me tell you, when you’re paralyzed, rolling out of a rogue, tilting wheelchair becomes a whole prayer meeting. I was whispering, “Okay Jesus… please let this bed catch me,” while doing the most ungraceful trust fall known to mankind.

Thankfully, the bed did its job, unlike every piece of machinery I own. Of course, it is wire free!

I did try several times to fix the chair “girl” style. I turned it off and on and off and on again. But no luck.

Unfortunately life doesn’t pause for dramatic, renegade chair shenanigans because the very next day I had to go to work. My ramp might’ve been on vacation, but I definitely wasn’t. Real life said, “Glad you survived your adventure — now get moving.”

But the remaining issue was in one hour, both my van and my wheelchair quit on me, and I can’t walk. I rely on those two very important modes of transport to get anywhere. My chair is my legs.

So Morgan swooped in to rescue me with her three little boys, my manual chair, and her trademark “we’re doing this” determination to get me to work. Unfortunately, I couldn’t hoist myself into her front seat using just my arms, so where did I end up?

On. The. Floor.

In the back.

Surrounded by car seats.

Where Morgan usually puts her grocery order.

And while I’m down there, my youngest grandson, “bless his sweet little heart,” (said in a Southern tone) kept “fixing” my hair with his Goldfish-dusted fingers. Nothing says glamour like cheddar crumbs being massaged into your scalp while your hair slowly morphs into Cyndi Lauper’s spiky 80’s punk masterpiece. Fantastic for Halloween. Less fantastic for a book fair.

Just when we finally had ourselves all gathered in the van, Winnie (the dog) bolted from the vehicle and decided it was the perfect moment to play a spontaneous game of tag. Morgan leaped out of the car while Winnie dodged, weaved, and sprinted like she was training for the Puppy Olympics.

Ten minutes later, Morgan finally caught her and loaded her into the car, frazzled, sweaty, and over this mission, while I sat in the back, surrounded by car seats, laughing hysterically at our carnival spectacular!

On the way, Morgan sighed and said, “This feels like a country song.” And without missing a beat, Lee Michael, the dramatic performer, burst into song from the back row:

“Her van broke…

Her chair broke…

And the dog ran awaaaayyyy!”

More laughter.

If you need a laugh, just picture me riding to work like cargo while Colsen styled my hair with cheesy fingers to the original country hit by Lee Michael while Oakley gave a play-by-play of everything he saw out of his window.

Honestly? Was Ashton Kutcher nearby? I’m still giggling every time I think about that bus ride to school.

When we arrived at school, Morgan had to push me up a giant ramp, hauling my bags behind her like a pack mule, with three little boys waddling behind us like little ducklings trying to keep up. All so I could get to work on time and pretend I lived a normal, put-together life.

But you know what?

We made it.

Somehow.

When I look back on this week, complete with malfunctioning ramps, rogue wheelchairs, Goldfish hairstyling, runaway dogs, and country ballads, I can’t help but laugh. It was stressful, yes. Exhausting, absolutely. But somehow it was also beautiful because woven right through all the chaos were moments of kindness, compassion, and grace.

People stepped in. God showed up.

And that combination is what keeps me going. Every time life gets hard.

This journey of caregiving, working, and navigating life from a wheelchair isn’t easy. Some days feel impossibly heavy. But then a moment of humor lightens the weight, or someone’s kindness lifts a burden I didn’t know how to carry. And every single time, I’m reminded that God is in the middle of it all. Steady, present, and good.

So this blog is dedicated to the chaos, the laughter, the grace, and the people God uses to hold us together. One wild week at a time.

And to the person who offered me an undeserved, grace-filled gift of love through this crazy time… thank you. It made me cry and became a living reminder of God’s own gift of undeserved grace on the cross. Please know that we are very grateful.

Also thank you to Morgan, who showed up with her whole heart and dove headfirst into the madness of the morning just to get me where I needed to be. Her kindness, strength, and servant’s heart are gifts I hope to never take for granted.

As many of you know, I’ve been paralyzed for 33 years. If it were only about sitting in a wheelchair, it might be easier. But it comes with daily battles – it’s muscle spasms, bathroom challenges, fatigue, sleepless nights, and an aching upper body from doing twice the work.

I try to stay strong and independent, but there are still hard days. In those moments, I cannot rely on my strength but I have to lean completely on God’s strength. Who am I kidding? I need to rely on His strength every moment, even when I think I’m strong. It’s all Him working through my weakness.

I believe God is in the midst of it all, using even the hardest parts of my story for good. And while I don’t always see the good right away, I can always find it in little glimpses or when I look back to see how things all worked together in a God way!

Monday night (it’s now Wednesday), I got up around midnight with a pounding headache and an intense thirst. As I drank some water, I noticed something strange – my mouth felt “off.” I couldn’t quite explain it, but it didn’t feel right. I shrugged it off and went back to bed, without giving it another thought.

But the moment I woke up, I knew something was wrong. I wheeled straight into Steve’s home office, already in tears, telling him something had happened. The second he looked at me, he saw it too. I could see concern in his face. I rushed to the mirror and that’s when I freaked out. The entire right side of my face was drooping. I instantly knew I was dealing with facial paralysis. But was it a stroke? Or could it possibly be Bell’s Palsy? I thought of that because I had known a few people who had it.

Bell’s palsy is a condition that causes temporary weakness or paralysis of the facial muscles, typically on one side of the face, usually caused by a virus. Stress can be a contributor as well. Not that I have any stress in my life.

Steve had briefly seen it when I smiled the night before but didn’t want to say “Hey, your face looks weird.” Probably not a good conversation starter for a husband’s well being, huh? He also didn’t think much about it as I often make silly faces at him, but he did notice one side of my smile was droopy.

I called my doctor immediately, and she told me to get to the ER right away to figure out what was going on. Everything was happening so fast, and my mind was racing with possibilities. Was it a stroke? Something worse? I was scared, unsure, and desperate for answers. When you end up paralyzed from giving birth, you get a little over anxious when something strange is happening in your body.

For some reason, I couldn’t stop crying. The fear, the uncertainty – it all just bubbled over. On top of it all, life wasn’t stopping. My three grandsons were at the house, I was supposed to pick up my granddaughter from school, and my mom, who has Parkinson’s and dementia and lives with Steve and I, was having a rough morning and needed a lot of extra help which I didn’t feel capable of in my current situation.

The weight of everything hit me at once. I felt completely overwhelmed. The anxiety was intense, and I didn’t know how I was going to manage it all, especially not knowing what was happening to my own body.

Thankfully, my daughter jumped in and took over everything. Without hesitation, she cared for my mom, called my granddaughter’s mom at work to offer to pick her up, reached out to her aunt for extra help with Mom, packed everyone up, and took them all to her house. She even made a meal for us and did my mom’s laundry.

In the middle of my fear and chaos, she became the calm. Her presence, her quick thinking, and her love steadied me in a moment when I felt like everything was unraveling.

I was beyond grateful, and honestly, deeply moved by her support. Watching her step in with such calm strength filled me with pride. She carried so much responsibility on her shoulders that morning and somehow stayed steady and composed through it all.

In a moment when I felt completely undone, she held things together. It was one of those moments where you realize your child has become an anchor, a gift straight from God when you need it most.

I have such a wonderful husband who stopped his day at work to take care of me, including just holding me while I cried. Plus I have adult children and grandchildren who just care about me and love me. I am blessed by each of them and their texts and calls and offers of help and prayers.

As I was getting dressed to leave for the ER, my phone rang. It was a friend of mine, Robin, who’s also paralyzed and she had experienced Bell’s palsy, not once but twice. The timing felt like more than coincidence. It felt like God.

I answered the call and talked to her as I got ready to go, despite my slurry voice. Her calm voice and firsthand knowledge were a gift. She shared what she went through, what helped, and what to expect. In the middle of my fear, her words brought comfort, clarity, and just enough peace to get me out the door.

Once we arrived at the ER, things moved quickly. Because I was signed in as a possible stroke or brain injury, they wasted no time. I was sent for a CT scan, had blood drawn, and endured 4 or 5 attempts to get an IV in.

Even after all the surgeries I’ve had over the years, I still hate IVs. And this one required a larger needle, just in case they needed to run tests with contrast dye. It felt like insult added to injury, but I kept reminding myself: answers were coming. I just had to get through it.

The worst part of the day was the MRI. I hadn’t had one since before my paralysis (surprisingly), and I was terrified. I thought there were small metal bolts in my spine from my surgery all those years ago, and I couldn’t shake the fear that I’d get sucked into the machine like a magnetized cartoon character. Thankfully, that didn’t happen. Phew.

But then came the real challenge. As soon as the noises started, my muscle spasms went wild. My legs jerked so violently they were hitting the sides of the machine. My back and head throbbed with pain, and through it all, I was supposed to keep my head completely still. I was tense and panicked, trying so hard to hold my body steady even as it fought against me.

I prayed nonstop through those 15 to 20 minutes. I begged God to be with me, to stop the spasms, to just help me get through it. I wanted so badly to hit the “stop” and “help” button but I didn’t. God answered my prayer, not by taking away the pain or calming the spasms, but by giving me the strength to endure it.

It was uncomfortable. It was painful. It was anxiety-inducing. But I made it through.

The MRI and CT scan both came back clear so no signs of a stroke or any brain bleeds. What a relief. Based on my symptoms all pointed clearly to Bell’s Palsy.

But even with a diagnosis, the reality was hard. I can’t eat or drink properly because one side of my mouth just wouldn’t cooperate. I’m drooling like a teething baby. My vision is very blurry and one eye will not close. My speech is slurred and it’s hard to talk for long. I have a terrible headache and my smile makes me look like The Joker (Steve’s observation).

The doctor explained I’d need several medications, including prednisone, and that recovery could take anywhere from one week to several months.

I’ve known two friends who never fully recovered from it, and Robin who had it twice was affected on opposite sides of her face each time. That knowledge sat heavy in my mind. I want to hope for a quick and full recovery, but I also knew I need to prepare my heart to walk through this, however long it takes.

I have to take a moment to honor my sister-in-law, Jen. She picked up my mom from my daughter’s house, brought her home, got her ready for bed, and then spent the night and next day caring for her so I could rest and recover. Jen is both friend and family, and one of the greatest gifts in my life. She always steps in without hesitation, no matter the situation. We’ve walked, and wheeled, through so much life together, and I treasure her. Her steady presence and servant’s heart are living proof of God’s love in action. Plus she can just make me laugh.

But both Morgan and Jen stepping in to take things off my overflowing plate gave me the peace and calm I needed. I knew that they could handle things with my mom so I could take time to think of my own needs.

This certainly wasn’t the week I planned. I didn’t expect to wake up with half my face paralyzed, to face new physical struggles, or to be reminded once again of how quickly life can shift. But through every test, every tear, and every tense moment, I was never alone.

God didn’t stop the discomfort, but He stayed with me in it.

He didn’t calm the spasms, but He gave me strength to endure them.

He didn’t remove the fear, but He whispered peace to my anxious heart.

I’m learning, yet again, that trusting God doesn’t mean everything will go smoothly. It means believing He is good, even when things are hard. It means clinging to His promises, like “When you pass through the waters, I will be with you… the rivers will not sweep over you” (Isaiah 43:2).

I don’t know how long this Bell’s palsy will last. I don’t know if my face will fully recover. But I do know this… God is faithful. He is with me. And even here, even now, I can trust Him.

And honestly, at first I didn’t laugh but I can now as I think half my body’s been paralyzed for 33 years yet apparently God thought, “Let’s give her a little more. She’s handling it so well.” Not funny exactly, but sometimes you’ve just got to find a little humor in the hard. It’s how I cope. It’s how I hold on. And it’s one more reminder that even when life gets weird, God is still good. And He designed me with the ability to laugh.

PS My facial recognition on my iPhone wouldn’t work today which really made me laugh.

PSS I won’t share a photo because I look stranger than normal. 🫤

Over the past week, I started a Bible study called “Dwell On These Things”, by Vera Schmitz and Natalie Abbott, which focuses on memorizing a section of Philippians, Chapter 4. The verse we were working on last week was Philippians 4:4:

“Rejoice in the Lord always. I will say it again: Rejoice.”

Lovely verse.

Great reminder.

Beautiful sentiment.

The week started out great with a lot of joyful time with my grandkids, but as the week unfolded, so did a wave of discouragement, crashing into every area of my life. Physically. Emotionally. Financially. Spiritually. One hit after another.

Bad test results. Big decisions. Sleepless nights. Extra bills. Frustration with people. And let’s not forget the physical ailments that were dragging me down like a weighted blanket.

Joy? Yeah, I didn’t feel an ounce of it.

What I did feel?

Frustration.

Sadness.

Anxiety.

Weariness.

I was overflowing with almost everything except joy.

So where was this “rejoicing always” supposed to come from?

Always? Really?

As in every time, on every occasion, forever, consistently, without exception?

Apparently yes. That is the definition of always.

It didn’t say “Rejoice unless you have a sinus infection.”

Or “Rejoice until you are facing a scary health report.”

Or “Rejoice unless the bills pile up, your body gives out, and someone ticks you off while you’re running on two hours of sleep and zero patience.”

Nope. Not even a footnote that says, “Joy optional when blueberries spill all over your floor and your wheelchair crushes them into a juicy crime scene.”

(Yes, the blueberry massacre was real. I kept trying to clean them up, but every roll of my wheels just spread the carnage. It was less “kitchen cleanup” and more “CSI: Smurf Edition.” It actually looked like I wheeled over a family of Smurfs with the different shades of blueberry guts all over my kitchen floor.)

I mean, come on, Paul! Couldn’t you have thrown us one exception?

Didn’t he understand how utterly frustrating, disappointing, and exhausting life can be?

But… wait… hold on. He did.

Because Paul wrote this verse while being chained up in prison.

No beach views. No luxury mattress. Just iron bars and cold stone.

And still, he said, “Rejoice in the Lord always.” And for extra emphasis, he repeated it, “I will say it again: rejoice.”

That has to mean it is important to say it twice!

Okay, fine. He may not have rolled over blueberries, but he knew suffering. Real suffering. And somehow, even in that mess, he found joy.

And I think it was not because of his circumstances, but because of his Savior.

Maybe that’s what “rejoice in the Lord” actually means.

Not rejoicing in the moment.

Not in the mess.

But rejoicing in the One who is steady through it all.

Even when life feels like a never-ending loop of test results, bills, sinus infections, and blueberry disasters – He has not changed. And maybe that’s reason enough to rejoice.

Always.

So yes, I’m still dropping things, still tired, still slightly salty about the blueberries (they are $$$), and if one more unexpected bill shows up, I might put it back in the mailbox with a note saying “Current Resident: Emotionally Unavailable.” But I’m learning that joy isn’t the same as pretending everything’s fine. It’s choosing to trust God’s goodness even when life feels like a long-running drama with plot twists I didn’t approve. I’m choosing to rejoice, not because my days are smooth, but because my Savior is unwavering. Even if joy comes through tear-streaked cheeks, I pray to choose it, daily and always, not because of what He gives, but because of who He is. The cross was enough. His forgiveness is enough. His love is enough. He is always worthy of praise.

{No Smurfs were harmed in the writing of this blog.}

This story is a little embarrassing, but let’s be real… that has never stopped me from sharing the craziness of my paralysis journey. So sit back, grab some grape juice and enjoy my less inspiring version of The Color Purple.

Last week I was tired of drinking water so I made myself some grape Crystal Light. I’m recovering from surgery so I’m temporarily sleeping in a hospital bed in my living room. One evening I went to lay down with a glass and immediately spilled it all over my vinyl flooring, personal items, bedding, and pjs.

I currently have my catheters and medical supplies on the floor by my bed, within easy reach. Of course, as it dripped downward, it splashed and splattered, making a colossal mess! My medical supplies were not excluded from this mayhem.

Coinciding with the grape juice, I was not feeling my best and had no appetite plus felt constantly exhausted. Recovering from surgery, I didn’t give much thought to feeling “off,” instead assuming it was pain meds and post op symptoms.

As the week progressed, I continued to feel worse and noticed that my urine had an odd tinge of color plus my catheter bags were turning dark purple. Remembering the spilt juice, my husband teased me that my “kool-aide” really had not missed a thing as it spilt.

Feeling worse each day, on Friday evening as I thought back on the week, I realized that this could not possibly be a result of the spilt Crystal Light. Some of my supplies had been back in my bedroom during the “Great Spill of ‘24” but were still turning deep purple. My husband insisted it was the juice but I was unsure. The facts weren’t adding up.

So I turned to Google as I always do when I’m in fear of imminent death. Web MD has saved my life on more than one occasion.

(Okay, that was just thrown in for dramatic effect. It’s never really saved me from anything.)

But I googled “purple pee,” and lo and behold, I had a rare syndrome called “Purple Urine Bag Syndrome” or PUBS that caused my strange and unusual symptoms. It wasn’t life threatening but could be a serious UTI. Being paralyzed I’ve had many, many UTI’s over the years, but this took the prize. Seriously, I couldn’t make this up if I tried.

By the way, don’t just Google PUBS because you will simply get a long list of bars. It’s obvious how I discovered that mishap but now my Facebook and Instagram feed are filled with Pub decor and funny bar t-shirts. Good grief.

Asking all of my nursing friends, no one had ever heard of purple urine, so I decided I should go to the Urgent Care first thing in the morning.

My dear friend, Mari, who is a nurse took me on Saturday morning and neither the doctor nor the nurse had heard of any purple pee issues before me.

I have heard several times before from medical professionals, “We’ve never seen this before.”

Yep. I am one of a kind. Unique. Special.

I may donate my body to science when it’s my time to go to Glory.

And yes, I did have an infection and received antibiotics which is clearing up this very odd infection

(Let me add, as a paraplegic I had shoulder surgery so I’m down to ONE usable, working limb. So instead of a paraplegic, I’m calling myself a tripalegic since three limbs are now not working properly. This is important soon.)

Steve, my husband and I are always laughing at the absurdity of my life. And my brother sent me a joke about the song “Purple People Eater.” We decided to expand on it and wrote this little diddy about my current condition (which everyone over age 40 can enjoy because the young-ins probably won’t know this iconic song).

“I am a one armed, tripalegic, tired, purple peepee wheeler.”

Sing along! It’s catchy!

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Deeply blessed, I have a dear and precious tribe of friends who threw me a “Purple PeePee Party.” When friends do that, you know they are keepers!

I actually had felt sick and didn’t show up to my own little surprise party (which they said was like the bride not showing up for the wedding). They FaceTimed me so my hubby drove me over to our bi weekly Bible study because who would want to miss a Purple PeePee Party. Ummm… no one!

They had purple cupcakes, purple jello, purple drinks, and purple flowers! And they all wore purple!

I felt so loved, cared for and connected at the outpouring of encouragement from my girls! 💜

So there ya go… that concludes Season 9, episode 22 of House, the show of medical mysteries.

😝

Growing up, I viewed my Mom as a pioneer woman. To me, she could do almost anything, probably because I watched her daily accomplish so much. She was June Cleaver and Carolyn Ingalls wrapped into one super mom package.

Gardening, canning, cooking, sewing, quilting, knitting, cross stitching, working, ironing, cleaning, yard work, painting, shoveling snow were just a few of her regular tasks. Our 3 story brick home was always clean; our clothes were never wrinkled; dinner was always served warm at the same time nightly; green beans were always snapped; applesauce was homemade; and our mittens were always hand knitted. She made homemaking look so simple and easy.

Imagine her surprise when she raised a daughter who hemmed her husbands pants with a stapler; bought new socks instead of darning the old ones; used the dryer as an iron; and Christmas cookies were Oreos with red icing rather than homemade, iced sugar cutout cookies.

Now put these two polar opposite women together in one house and tell them to live together. One is introverted, the other extroverted. One is routined, the other flexible. One is a homebody while the other is on the go. That’s what happened when my mom came to live with me almost a year ago.

I am paralyzed. She has Parkinson’s.

What a pairing. We are like the old TV show, “The Odd Couple.”

There have been some frustrations on both sides as we have adjusted to sharing a house after 33 years of living apart. But I love my Mom and promised to care for her as long as humanly possible. So we have made it work with lots of laughs and maybe a few tears. And perhaps a few grumbles of annoyance at one another.

Parkinson’s and dementia are two terrible diseases. I have watched both of these illnesses rob my mom physically and mentally over the past year. It is hard to watch my active, hard working, talented mother become reduced to sleeping in a recliner a good portion of the day. She can no longer do the things she enjoyed like read, knit, sew, cook, bake, or color because of the Parkinson’s. She can’t remember how to make a cup of coffee, send a text, turn on the TV, or write a letter because of dementia. I daily grieve her loss although she’s still here. It is watching her slowly slip away that makes me feel sorrowful.

Falling has become routine. One night this week, we found her on the floor writhing in pain. She had a terrible tumble and dislocated and broke her elbow. She needed to have extensive surgery to repair all the damage. I think the stress from the fall has increased the symptoms of her dementia, causing more confusion, hallucinations, and paranoia than normal. (I did giggle when she told me she broke her elbow by diving off the high dive as she was trying out for the Olympics.)

But the reality is a punch to the gut as I witness this incredibly strong, independent woman slowly change. I know she is still there. That’s what is so distressing about it. There are great moments where she is clear and coherent and I see my beautiful Mom, but then in a blink of an eye she is confused again and staring blankly into space with no clue where she is or what day it is. This week alone she’s celebrated Halloween, Christmas, and the 4th of July. (I haven’t told her it is almost Thanksgiving.)

I hate being her caregiver. I hate talking to her like she’s a child. I hate bathing her. Dressing her. I hate leaving her alone. I hate seeing her confused. I hate finding her on the floor. I hate Parkinson’s. I hate dementia.

I just want to be the daughter. And her to be my mom.

I’ve cried so much this week because I do not know what to do. I am not physically or emotionally equipped to provide her what she needs to be safe. I feel like I am letting her down. My desire was to make her feel loved, comfortable, safe, and cared for in my home for the rest of her days. Instead tonight she cried and begged me not to leave her alone at the rehab center. I want to bring her home. But I don’t know if I can keep her safe from another serious injury. These thoughts just roll around my head 24/7, making me exhausted as I try to figure out how to love her well in these decisions.

I wonder if she cried this many tears over me throughout her lifetime. Worrying about my decisions and choices. Anxious about health crises I experienced. Concerned about how to best care for me. I’m sure she did. Probably buckets of tears as I became paralyzed with a tiny infant. Had life threatening illnesses. Rode on the Life Alert Helicopter. Went through 29 surgeries. Adopted a child overseas. Experienced a high risk pregnancy. And so many other trials she watched me endure over the years.

Now as I have to do the same for her, It is like the movie Freaky Friday… we have switched roles. I am suddenly the parent and she is the child. Neither of us like this role reversal.

Moving forward, I pray that God directs me (and my brothers) as we make hard decisions on her behalf. I pray that we can feel His guidance and wisdom on this journey and that He saturates us with the peace that passes all understanding. I pray that happy memories of my mom flood our minds to help us survive the sadness of her diseases.

I’m going to close by simply saying I miss my mom.

And she lives right down the hall.

As a little girl, I always loved to swing. When I was six, we moved to Pittsburgh into a large farmhouse with 3.5 beautiful acres with a creek and tree filled woods running through the property. Knowing my love of swinging, my dad searched our property and found the perfect tree to hang a swing for me. It was a simple board with two ropes but it was hung over a hill so it felt like you were flying when for brief seconds, you could no longer see the ground.

This wooden tree swing held by rope was my personal sanctuary. Pumping my little legs as a small girl, I loved the exhilaration of flying over the hill higher and higher. As I grew, I could be found immersed in a chapter book as I gently pumped the swing holding onto both the ropes and my book. Becoming a teenager, I would swing as I dreamed about boys and my future. And that old wooden swing gave me a respite from research papers and exams when I came home from college for a break.

My old wooden swing was there for me when I needed alone time to cry tears of sadness, anger, and hurt; held me when I felt anxious, worried, or depressed; soared me through the air as I laughed, day dreamed, or played with friends; and glided me over the hill when a certain boy came to visit and pushed me on the swing as we flirted with one another. (And yes, I am talking about my husband.)

The day I came home for a visit as an adult and found that swing gone was a sad day. With the wood and rope rotting, my dad cut my long time friend down. I felt silly grieving over the loss of a board and some rope. But the truth of my sorrow was deeper than a swing.

I had recently become a paraplegic and it was the loss of my legs I was actually grieving. The reality of paralysis hit me as I realized I could never swing again. My legs could no longer pump back and forth to allow me the simple pleasure of swinging. I could not walk through the woods. Wade in the creek. Play kickball in the yard. Run. Dance. Jump. Swim. Skip. Or even stand. That part of my life had changed.

And I believe I have completely adapted to life in a wheelchair, but whenever I am asked what I miss the most about being paralyzed, I never hesitate and immediately reply, “Swinging.”

Recently I shared my sorrow over no longer being able to swing with a group of precious, dear friends. These girls wanted to fulfill my dream of swinging again. We went to Delaware together for a few days and stayed in a cozy cottage along the bay of the Atlantic Ocean. And along the bay, in the sand, were porch swings overlooking the sun glazed water.

These beautiful, Godly women helped me transfer from my wheelchair onto two of these swings and gave me the gift of moving without my wheelchair. God placed an occupational therapist (Debi) in our little group and she was determined to figure out the best way to make my dream a reality. And she cried when I began to swing.

As a paraplegic, I can only go from A to B with the aid of a 400 pound power wheelchair. And I am so thankful for my chair. But I am also so tired of my chair. So to swing in the air, without my metal legs, gave me a sense of freedom and delight that is hard to put into words. Unless you’ve spent every day for 31 1/2 years relying on a machine to move, it is hard to explain the joy of the simple action of swinging.

I didn’t feel it but my feet slid through the sand as I gently swayed with the beauty of God’s creation surrounding me. The breeze caressed my face, the sun warmed my back, the water softly lapped along the shore, the birds sang in the trees, and squirrels tossed nuts out of trees onto the ground. What a perfect setting for my return to a long time love.

But even more blissful than the euphoria of swinging was the blessing of friendship. Friends that help fulfill a dream. Friends that see your heart. Hear your longings. Laugh in your delight. Cry over your sorrows. Carry your burdens. Rejoice in your joy. Walk alongside you. Love you. Care for you. And pray for you and with you.

I have the honor to be a member of a God given community of women (we call ourselves Seal Team 9), and this group has shown me the beauty of a body of believers and what the church should look like.

Thank you, my giving, serving and compassionate girls, for loving all of me, all the messy, ugly, beautiful, and real parts of me. Always know I love you back. ❤️

Also I want to give a shout out to the friends who willingly helped with my mom so I could get away and relax for a few days. Thank you Jen, Jean, and Cherylann for your help. You are treasures. Also thank you Pam and Mari for your help throughout the last few months.

Thank you Jesus for friends. Angola by the Bay. And a swing.

Last night I had a terrible evening/night. As a paraplegic, I have had severe muscle spasms for the past 30 years. Without feeling anything from the waist down, it does not make a lick of sense that you could stick a knife in my leg and I would not feel the blade; yet I experience excruciating pain with every muscle spasm.

How is it possible to feel pain where you do not feel pain? What’s the point of paralysis if I’m going to hurt? I can’t walk. So at least let me have zero pain. That seems fair, right? Oh wait… no one ever said life would be fair! 😵‍💫

Unable to sleep and wanting to cry from pain, last night I began to time the spasms. They were approximately two seconds apart. They began around 5pm and ended around 4am. Just to fall asleep, I took 7 muscle relaxers, 4 Advil, and 2 Tylenol. And a partridge in a pear tree.

I wanted to crawl out of my own skin from exhaustion, irritation, and agony but instead read a book and watched Hulu in hopes to distract myself. (Yeah, that didn’t work.) I got out of bed hoping that changing positions would help. (It didn’t.) I ate a piece of chocolate. (That actually did help for one second.)

But then a single second later, I was smacked with another wave of pain. I went back to bed before I stuffed my face with 7,000 calories of chocolate.

Over the years, I learned to live with the constant pain and frustration of my legs tightening and jumping. I have broken bones from spasms, fallen out of my wheelchair, and spent many sleepless nights. I took numerous pills to control the spasms but they just left me feeling like a zombie.

Desperate over the years, I tried different things to end the spasms. I went to therapy, bought a standing machine to stretch my muscles, changed medications, and even had nerve blockers in any attempt to stop the pain.

Raising three children, being a wife, volunteering at church, taking care of a home, cooking meals, doing laundry, going to sporting events, school activities, and maintaining relationships continued to happen all while living in constant pain and taking strong medications. I know at times my personality left a lot to be desired as I was short tempered, irritable, depressed, anxious, and impatient. My husband and kids probably endured the brunt of my mood fluctuations.

It was hard. Life was hard. And I was weary.

But then my doctor offered me hope. He suggested I try Botox treatments by having injections put into the muscles of my legs. He sent me to a spinal cord specialist, and I began the treatments of injections every few months.

My life changed immediately. Botox stopped my spasms almost completely. I no longer needed so much medication, going from 28 pills per day to 1 1/2 pills per day. I did not have constant cramping and discomfort. I slept at night without levitating off the bed. It was a miracle! After 27 years of living with torture, the emotional roller coaster wasn’t as wild of a ride. I could think clearer without a row of pill bottles that said “will cause drowsiness.” I felt like a new person. It felt like freedom.

And bonus… I had wrinkle free legs.

Unfortunately my doc never agreed to save any for my face.

Three years I lived pain free. My brain and body forgot about the 27 years of pain. Until my insurance denied my treatments. Fighting the company did not work, and I had no choice but to quit getting the injections.

Each set of shots cost $13,000 which I get is EXPENSIVE! When someone at the insurance company stamped “not approved,” they did not think about the person on the other end of that form and what they were deciding about their life. Their health. Their mental well being. Bottom line… it was expensive and deemed not worth it. But they were worth every single penny to me.

Sadly in the past few weeks, the spasms have been returning, and they gain in strength and intensity every day. I will just put it out there that it is arduous! I do not want to go back to that exhausting, wearisome, frustrating, painful, annoying, crappy, and burdensome life! (I feel a two year old tantrum coming on just thinking about it.)

This is the part of my blog where I switch from a difficult situation to how God has worked in my life. What He has taught me through the difficulty. How I can choose to glorify Him despite the trial.

But at this moment, I am laying in bed jumping and hurting and facing another sleepless night with these dang spasms, and I can only pray “please God…”

• Please help this pain stop.
• Please let the medication kick in soon.
• Please allow my new insurance to cover my treatments.
• Please give me rest. I’m tired.
• Please remove my frustration and replace it with a heart of thankfulness.
• Please do not allow my heart to become angry, bitter, or depressed. Instead fill me with the fruits of the spirit (love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control).
• Please God… use this to make me more like you, Use this experience to touch someone else who is struggling. Use my life to give you glory.

It is easy to make it about me when I am feeling pain every two seconds. It is hard to think about anything else when you feel that radiating, constant pain. It consumes me, making it a challenge to think about anything else. Therefore, my biggest “Please God” is that I do not make it all about me.

God first. Me last. Please God.

Have you ever gone to a cemetery and read the names and dates on the tombstones? The dates signify the day of birth and the day of death. But have you given thought to what signifies the person’s life… their daily, 24/7, 365 day a year LIFE. The ups and downs, adventures and uncertainties, successes and failures, joys and despair… those are all signified by a little symbol that doesn’t tell us a single thing about that person… the dash (-).

At the end of my life, my dates will be September 21, 1968 – date to be determined. But no one reading those dates on my tombstone will know anything about my life. They will not know I was a:

• Believer
• Wife
• Mom
• Mother-in-law
• Wheelie G (Grammy on Wheels)
• Daughter/Daughter-in-law
• Sister/Sister-in-law
• Aunt/Cousin/Niece
• Friend
• Volunteer
• Paraplegic

Nor will they know anything of my personality traits:

• I am talkative (Although I prefer to say friendly.)
• I’m an open book (I will share just about anything about myself… sometimes too much.)
• When I get annoyed, it’s over in a flash but I feel terrible and guilty for days.
• I am a people pleaser and have trouble saying “no.” (Steve, my husband, says I can’t say no to anyone but him! That is probably pretty accurate.)
• I am an extrovert. I get my energy from being with other people. I like small periods of being alone but not too long.
• I overthink things. If someone makes a comment, I will think about it for days, dissecting every word wondering what they may have meant.
• I am honest. I can’t lie. You will know if I try because my face gives me away.
• I love to laugh. It is therapy for me.

My dash will not tell anyone about my quirks:

• My pillows have to be perfect on the couches. My house can be dusty and cluttered but my pillows must be straight and fluffed.
• I am slightly obsessed with cinnamon and love my house to smell like cinnamon. I get teased about it by family & friends regularly.
• I love, and I mean LOVE, reality (I do question the word reality) television! I like everything from Survivor to Hoarders. Watching glimpses of people’s lives enthralls me and captivates my attention.
• I have too many clothes. I have fat clothes, skinny clothes, and in between clothes. I’m afraid to get rid of the fat clothes just in case. The skinny clothes are my motivation. But the in between clothes are my go to’s most days.

My embarrassing moments aren’t told in that tiny symbol:

• Laughing so hard, I peed my pants on a first date. There was not a second date! 🥺
• I went shopping at several different stores only to discover I had a bra dragging from behind my wheelchair the entire time! And it was a big ole granny bra too, not a pretty, frilly one from Victoria Secret.
• The Easter Bunny saw me completely buck naked once. (That story is in my blog, Story Time.

Seeing my tombstone won’t show my favorite extracurricular activities:

• Reading
• Writing
• Napping
• Going to yard sales
• Listening to people’s stories
• Serving and volunteering
• Party planning

It won’t tell about the people I love:

• JESUS – I am beyond thankful for His gift of grace & salvation!
• MY FAMILY – they are my heart, my favorite people to spend time with, and the ones I would lay down my life for! My husband, kids, and grandkids are my joy plus I am blessed greatly by an amazing extended family (parents, siblings, in laws, aunts, uncles, cousins, nieces, nephews). I hope when I’m gone, they will know how deeply I loved them.
• MY PEOPLE – I have had many people that have walked my journey with me and I treasure each friendship. Some have stayed in my life while others were only there for a period of time, yet all have a piece of my heart.
• MY INNER CIRCLE – my close group of friends who pray with me, speak truth to me, love me, and encourage me… I am forever grateful.
• MY KIDDO’S – those special kids (many now adults and my friends) who I had the privilege to have in my home, led in a small group, had in youth group, taught in Sunday school, or held in the nursery, you will never know what an honor it is to be part of your life. I love you “oodles!”

Anyway… you get it! The dash illustrates so much! My dreams (to see a baby born), my fears (being alone), my adventures (daily life as a paraplegic), my joys (seeing my kids do what they love), my pet peeves (people talking about me behind my back), my character (honest, dependable, loyal), my bucket list (going on a missions trip), and the list can go on and on.

When I leave this world some day, the essence of my life will be encapsulated in a tiny symbol. People won’t know I make my bed every single day or always stay up too late and struggle to wake up in the morning. They won’t care that I like the toilet paper to go under, not over (I know that’s the unpopular way). No one will know that I love freshly washed sheets or that I still can’t sleep on Christmas Eve. And my dash will not show that I spent most of my life sitting rather than standing.

It is inevitable that someday we will be gone from this earth. I praise God I am promised the gift of eternity in Heaven with Him. Until then, however, here are a few ways I want to live the rest of my “dash.”

• Love people as God loves them. Seeing others through HIS eyes rather than my own.
• Intentionally pour into people. Listen to their life stories. Encourage them. Care for them. Love them. Pray for them. Serve them.
• Forgive. Offer grace. Just like He has done for me.
• Be someone who gets to know the heart of others rather than making a quick judgement of whether they are worthy. I’m not worthy but Jesus loves me!
• Be thankful. Gratitude, rather than complaining, can transform your perspective. I want to see life with a grateful heart.
• Stop worrying about people’s thoughts and opinions about me. Stop overthinking. Stop people pleasing. (This is a very big one for me )
• Give more. I have been blessed and want to see the needs of others and generously give, whether it is giving time, money, prayer, or serving.
• Love my family better. Not letting little things bother me but appreciating these amazing people for who God designed them to be.
• Show my grand-babies the love my grandparents showed me. Give them memories of time spent encouraging, listening. and loving them. Invest in their precious little lives.
• Spend time with my friends. I am thankful for the friends who pour into me and I want to cherish time with them.
• Know God more. Spend time reading His Word and talking & listening to Him so I can do all of the above things. ^^ I certainly cannot do any of it on my own!
• And while I know there are many days that I show my human side by being impatient, frustrated, and stressed over unimportant things, I pray that more days I exhibit the Fruits of the Spirit. (Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control)

So when I go to glory and my life is illustrated by a little dash, I just pray that people look back and instead of seeing me, they see Christ who was in me!

I like to add photos or memes to my blogs and googled images for “Live your dash” and this poem popped up. It is perfect for this blog!