Sliding In After the End of Mitochondrial Disease Awareness Week

When a second Atlanta bound flight left the Hartford, Connecticut airport without us, I caved to a second round of airport coffee. The Dunkin Donuts brew helped, but I soon found a slice of sunshine on the floor and curled up in hopes of warmth and sleep. 

A constant stream of announcements interrupted my attempt at dreams instead, but the sun warmed my chilled body. For a short time, sunbathing in blue jeans and a sweat shirt carried me far from the hustle and bustle.

But as the day wore on and flight after flight left us behind, I grew anxious. I didn't mind spending hours in the airport as a standby passenger... but I was out of medicine. Completely out. And I had no idea how my body would manage another day of travel without it.

It didn't help that when I packed my medicine for our trip, I forgot to add three days of my morning dose of Effexor. With my system already somewhat out of whack, thoughts of driving to LaGuardia Airport, sleeping for only a few hours, and trying another early flight in the morning made me slightly mental.

You see, my body shuts down without medicine. My legs get stiff and a fatigue induced nausea leaves me desperate to lie flat. My thoughts turn to mush and my eyes struggle to keep images from splitting in two. 

So while I enjoyed our jaunt through New England and time away with my husband, the reality of my illness hit me head on as waited in the airport. And I knew I couldn't let Mitochondrial Disease Awareness Week end without a proper acknowledgement. 

Ironically, I've been trying to finish this post for two days now. But after the long day in the airport that led to a 1:30 am Friday morning arrival at home, my brain has been shutting down and my body demanding naps, repeatedly.

I found a link on the web that claims today is World Stay in Bed Day in honor of Mitochondrial Disease And while I hope to go visit my grandfather who just moved here from Pennsylvania, there's a good chance I'll end up back in bed again as my body slowly recovers from our crash landing at home.

I spend more time there than you might imagine. 

For my body simply doesn't power like yours. I look fine on the outside, but inside, my batteries don't fully charge. If I live within carefully constructed boundaries, I function OK. When I go for more, I wind down and crash.

While it's annoying for me, there are a lot of children who battle this disease from birth. Without the cellular strength to simply hold their internal organs together, they require feeding tubes, breathing machines, and mobility assistance. It's brutal, costly, and heartbreaking for the families involved.

But we fight to live with hope. 

It's the only way. 

But it's amazing how far hope carries us.

"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint because God has poured our his love into our hearts by the Holy Spirit, whom he has given us" (Romans 5: 2 - 5).

I wrote the song that plays in the back ground of this video, although they only used the accompaniment track until the very end. I think it sounds clunky without the melody, but the smiling faces make a watching worth while. You can hear the complete at this link:  Hope Flies




 
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Thoughts on the End of the World from Great Barrington, MA

Coffee filled my system at 4:15 AM Friday morning and actually did its job. By 10 AM, Don and I had landed at the Hartford, CT airport and were eager to get on our way. By 1 PM we were settled in Great Barrington, MA, eating lunch at a small café. 

And all of this after discovering the stray cat I brought home the previous weekend - and thought had run away - had actually hidden in our basement until she announced herself at 10 PM the night before we left. 

No joke.

Ready for bed, the surprising discovery interrupted my packing flow. Then, as we ran out to get cat food to leave in our basement, Dad called to inform us that we needed try the 7:44 AM departure I had determined to avoid. So we slept five hours and drove to the airport.

And I’m actually doing OK.

Thanks to a time share sale my Dad offered, Don and I booked this getaway for very little. I was excited and nervous due to travel concerns. When I learned the world might end while we’re out of town, I felt even more uneasy. 

Massachusetts just seemed very far away. A random vacation locale with several unknowns. 

I stopped by my sister’s home a few nights before we left and while chatting in her driveway, had an epiphany. My fear centered around this one question: How would I find my boys if they entered the wild beyond from Georgia and me from Massachusetts? 

When we die one by one, I’m quite certain heaven plans incoming parties with arrival dates posted beforehand. With enough notice, our loved ones gather at the portal, ready to celebrate our entry. 

But if a mass entry occurs from all over the world this week, I’m not sure how we will meet up. My boys would ascend with our Georgia family and friends while Don and I would be lost in the Massachusetts crowd.  

A bit panicky, I called my boys before we left home and made them promise not to settle in heaven until they’ve located me. Sam was quick to assert, “The world is not going to end next week, Mom.”

“How do you know for sure?” I threw back. 

“Because that harbinger stuff sounds like Bible decoding games - the kind people make money off of.”

His confidence reassured me and Nathan offered an obligatory promise to find me in heaven. So by the time the kitty we thought was gone reappeared, I was ready for adventure.

And our location has not disappointed. 

The quaint one-hundred-year-old home is divided into small apartments that lend themselves to rest. Ours is enchanting.

Outside our front door, a large covered porch offers a great view for morning coffee.

Don suggested we take turns planning our days so he chose the small church we attended on the outskirts of town this morning. A small group of about ten dedicated believers joined for worship that was more like extended fellowship, including prayer, testimony, and a concentrated focus on my healing. 

My mind goes to a hundred different places when believers talk about healing. I’ve thought about the subject from so many angles that I can’t merge the viewpoints into one. It’s complicated. Especially when you’ve lost someone you dearly loved after praying fervent prayers.

So while I’ll focus some attention on learning to receive from heaven, I’ll also look forward to the day the world ends, even if I’m in Massachusetts. For there’s an ultimate healing ahead that matters much, much more than any we can conjure up down here. 

Are you ready? Are you ready to see Jesus? Have you given your life to one who made you?  

It’s a simple transaction. But it changes everything. Absolutely everything. 

In closing, I'll share a song I recorded last week, titled The Mission. My five foot two Grandma lived with purpose and meaning. With the end of world in mind, let's press in and do the same.

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Helpless, Small, yet Happy in Jesus

After viewing the movie War Room, I sipped morning coffee in my closet a few times this week. Clothes still fill the racks so I turned off the lights and sank into the quiet. There, I anchored my soul in prayer, hoping to walk out my faith in the rigors of life.

I did OK until a few situations made me feel small. So I took a few mid-day trips to my closet (sans coffee), longing to recenter my heart and respond with spirit led words instead of my own.

 As I processed the conflict, Graham Cooke's words came to mind:

"It's important to the Lord that you never lose your sense of vulnerability to his goodness and kindness... If we don't stay vulnerable to the goodness of God we'll most likely get angry and bitter... You need to know 'Dad' from the smallest place possible."

The smallest place possible, you ask? Yes, the smallest place possible. We need to know Him when the stakes pile high against us. When we feel utterly alone. When others taunt our faith and claim there is no God. In the most desperate place, we need to rest assured of his goodness no matter what the world serves up. 

9/11. ISIS. Random shootings. Refugees. 

Instead of sulking, take time to revel in the good. Instead of growing angry, give Him the load.

As I struggled to stay focused last night, I drove to Bonnie's house like I do most Wednesdays. Bonnie has been battling ALS for over five years now. Diagnosed only days before her husband died of pancreatic cancer, she went to his funeral not knowing what laid ahead. Her sister-in-law, Lu, drove her home and never left her side.

All these years later, Lu still cares for her friend, day in and day out. I just stop by once a week to feed Bonnie dinner and give Lu a break. 

Sometimes we watch crime TV. Last night, we relived past vacations. Unable to even stand, Bonnie sat in her chair but traveled in heart to Niagara Falls, Lake Louise, and a lighthouse in Oregon.

Niagara Falls

Lake Louise

Oregon

Traveling with Bonnie and Lu on video through coastal towns slowed my thoughts. Reliving a happier time softened the harshness of the present. We laughed. A lot. And enjoyed scenic views I've never seen. 

The time out from the confines of illness stretched our boundaries. Staring at God's creative beauty made it easy to ignore feeding tubes, catheter bags, mobility aids, and a breathing machine that sits on a table close to Bonnie's chair.

Unable to even scratch her own nose, Bonnie often feels small and helpless. So together we seek to remember Jesus, His sacrifice, and the coming beauty we've yet to behold. 

I need more time in my closet. Alone in prayer. Because I still don't like to feel small. But if I don't give up, I'm quite hopeful in time His bigness will overshadow me, smallness and all. And I will stand confident in the absolute love of Christ.

Don't give up. Cry out for Him. For if you seek Him, you will find Him. If you seek Him with all of your heart (Jeremiah 29: 13). 





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Miss. Alabama and the Me That I Am

It happened. My mental game bubble burst and Miss. Alabama is to blame. Though to her credit, she has no idea she rocked my world.

It all started after a sky cap dropped me near the luggage carousel in the Philadelphia Airport last weekend. Even after two wheel chair rides and an extra round of Starbucks coffee, my legs defied me when I stood. 

At first it didn't matter since my red Rollator walker was near, providing an easy perch. Sitting comfortably, I was unfazed when my sister, Laura, pointed to the fashionista near by.

"She's got to be famous," she whispered as we waited for our luggage.

I craned my neck, peering around the standing passengers.

"Look at her pile of luggage," I replied, "And that man in a tuxedo picking it up."

As Laura and I casually gawked, a middle-aged man walked close by with his friend and exclaimed, "You sat next to Miss. Alabama on the flight?"

"Did you hear that?" I asked my sister, "It's Miss. Alabama. Let's look her up!"

Still waiting for our luggage (while her mound piled high) I pulled out my smart phone. After a quick search, her picture appeared, and I handed my phone to my sister. At 5'10, my sister could easily compare the screen image with the real life Barbie Doll standing across the way.

"That's her," Laura confirmed.

Suspicious, I did another search and learned that the official Miss. America Pageant takes place in Atlantic City in less than two weeks. Thus, an entire pageant wardrobe flew north with us that morning. 

Forget the real life contestant. The winning gown may have been on our flight.

In time our suitcases arrived and we stood to leave. When I stepped forward, however, jello legs inhibited my stride. Surprised at their instability, I fought familiar panic and began to play my favorite mental game.

For when my legs betray me, I often stand up straight with eyes closed and imagine I'm Miss. America, walking the stage with grace and ease. Stretched tall, I look beyond the red walker, as if it isn't even there. Having played this mental game many times, I'm used to a momentary lift carrying me above the stress.

As I exited the Philly Airport, however, it didn't work. No matter how I tried, the image wouldn't stick. With Miss. Alabama only a few feet away - in black platform stilettos and a bright green dress - my mental game derailed. I couldn't play pretend with the real thing in view.

Resigned, I sank back into my skin, held the walker handles tight, and moved forward with slightly bent knees and pigeon toes.

But as shuffled in awkward strides, my insides didn't tighten. In fact, the inner dialogue changed, "No, I'm not Miss. America. I'm a disabled daughter, sister, mom, and wife... and it's OK."

And it really was. For the first time, it was simply OK. Coming face to face with a real live contestant forced me to accept she's who she is and I'm who I am.

Miss. Alabama will strut her stuff in the next few weeks and perhaps win a crown. I, on the other hand, will continue with good days and bad, with lots of divine pauses (aka. naps), and will waddle to and fro if need be. 

And it's still OK.

I'm a Child of the King. Crafted by His hands. Very thankful the divine truth is settling in, again. 

I'd still like to lose ten pounds and wear cute sandals. But I don't need to be Miss. America. I'll just be me. The me that I am. The me God created, died for, and cherishes, wobbly legs and all.

I wrote this song a very long time ago. Time to listen again.
 




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