To Fuse, or Not to Fuse: that's been my question

By mid-summer this year, my right leg grew weaker than specialists understood and I was encouraged to fight for its survival. So I got referrals and made appointments.

Physical therapy. Neurosurgery. Podiatry. Orthopedics.

The neurosurgeon suggested an L4-L5 Spinal Fusion in addition to cleaning out the S-1 nerve root. The podiatrist explained I have a Neuroma under the ball of my right foot causing several issues with my toes. The orthopedist recently discovered my left ankle ligament has loosened again, making it a candidate for a partial ankle reconstruction using a cadaver tendon to replace the existing ligament.

I looked like Sam in the above photo when I left the last appointment.

Through it all, I've worked with Adam, a physical therapist at Physiotherapy Associates, once or twice a week, and am finally convinced I'm building muscle strength.

The right leg is stronger.

I've seen three physical therapists since I fell in Nov' of 09', requiring ankle and back surgery five weeks a part. The first didn't know what to do with me after four weeks because I didn't have the mitochondrial disease diagnosis at that time. The residual numbness didn't make sense to him or anyone else until the muscle biopsy and spinal tap diagnosed weak muscles and unhealthy nerves months later. I tried therapy again six months after but worked with a female who once stated, "I don't know how you walk on this leg." I felt more fragile after my time with her than before I went in.

There's no doubt I was weak. But I've cut back on activity, another year and a half of walking has gone by, and Adam isn't afraid to push my limits. I'm getting used to new pain that sometimes signals progress and sometimes forces a shut down. But after pondering back fusion verses ankle surgery verses exercises in hopes of avoiding both, I'm choosing the latter for now.

My left foot hurts due to unstable ligaments and tendons. The right one is tight and numb almost three years after a ligament reattachment surgery.  My reality? They're never going to be normal. And for now, I value walking on one foot that's not numb.

Accepting there's no perfect fix is a step towards freedom.

I may be forced to go under again. But after years of feeling stuck and stymied by muscle weakness and pain, the progress I've made has me ready to overcome. I'm choosing exercise, diet, and even rest when needed. It's hard for mito patients to balance exercise and rest. But I've become a believer again that exercise helps. Even in small amounts.

"Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka, they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion." (Psalm 84: 5-7)

"They go from strength to strength..." I love those words. Have quoted them before. They resonate in my heart today.

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Mitochondrial Awareness Week (part 3 and final)

What more is there to say?

After mito mom Lauri and I shared our first cup of coffee, I walked away strengthened in a way I didn't know I needed. At the time, our table talk was more beneficial than any Beth Moore Bible Study (which I highly recommend!) While I valued sharing my life with someone who knew the mito lingo and was learning to live with the day to day reality of our disease, bottom line, I needed to know I wasn't alone in the journey.

What struck me the most when I met Tina was the peace she emanates in the midst of it all. Having traveled and lived large, I struggle to accept limits. But Tina and her husband see their role as parents to three diagnosed kids as a ministry. A trip to Disney? Probably not. Life as most know it? Not on the radar.

But Tina rolls with it all. And I think of her often.

I met a women in the nursery last night who has a child with a totally different genetic disease, with challenges much bigger than my own. After hearing stories about families in their disease community, I marveled at their "underworld". And it reminded me again of how many exist.

Cancer. Alzheimers. Lou Gerigs. Type 2 Diabetes. Spina Bifida.

And that's the few biggies that come to mind because I know people closely affected.

So while this is Mitochondrial Disease awareness week, perhaps the greater challenge is simply: be aware of those around you fighting through whatever challenge they face. Look it up. Google it. Learn something about it so you know how to discuss it with even just a basic level of knowledge. Believe me, your friend will be grateful.

Take a meal. Share coffee. Listen. Celebrate life. Lots of people live with low energy, severe limitations, and daily reminders that good health really is a fragile thing.

In closing, take a minute and absorb one more video. My music's in the background, the chorus sung at the end. Meet families from my underworld. Some are still journeying and some have fought the good fight. But together, a difference is made.



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Mitochondrial Awareness Week (part 2)

Mitochondrial Disease is often referred to as an invisible disease. We "the sick ones" often look fine on the outside while our bodies betray us in various ways inside.

My friend Lauri raced her kids to the ER on a regular basis until after their diagnosis. Both children had life threatening illnesses around six years of age. The oldest was airlifted to Emory and put in an induced coma for several days. The youngest suffered encephalitis and wasn't expected to live.

Their bodies didn't produce enough energy to battle a basic ear infection. A minor illness could erupt into an emergent situation in a matter of hours. Now after a muscle biopsy and years on the "mito cocktail", a combination of energy producing supplements, they're thriving, growing, and stretching boundaries little by little.

Tina, on the other hand, has three children who presented in very different ways. The oldest exhibited weak muscles from birth, though a diagnosis took years. Looking back Tina remembers, "He conquered all the expected milestones, but since we were new parents, we didn't understand that he wasn't doing them as well as he should have." In time, the gap became obvious. Now in middle school, he faces continued muscle weakness and fatigue but excels in academics.

Her second child, however, is a thriving lacrosse player who battles extreme concentration issues in the classroom - perhaps even undiagnosed mini-seizures that couldn't be treated with normal meds due to side effects mito patients can't tolerate. And her daughter? She's struggling to eat, to gain weight. Her gastro system not up to par.

In many ways I feel blessed with my joint issues compared to their stories. But I struggled to pump the pedal while playing the piano yesterday; my ankles tiring easily from the up and down motion.
My arms felt heavy and flu like by the time I taught for two hours, the fatigue heightened from weekend activity. My left ankle reacted so poorly that in the end that I had no choice but to rest and allow heat to relax the tight muscles. I see an orthopedic doctor Friday and am hoping the tendon isn't in need of surgical repair. The pain concerns me. But surgery would bring a host of new issues.

When one area of our bodies requires more energy to heal, other parts suffer. I have two potential surgeries looming. Both would potentially solve current problems. But in this body, there's no telling what other issues could arise.

So I pray. I rest. I use the microwavable heating pad my mother gave me. AND I've spent hours in physical therapy this summer and early fall trying to strengthen what I can. I highly recommend Adam and Dustin at Physiotherapy in Kennesaw, GA. I've worked with Adam, but the entire team has made the experience fun, relaxed, and well worth my time.

Adam wasn't intimated by mito and has pushed me more than I expected. I'm grateful for the push. I think he's the reason I could climb more stairs than normal last weekend. But there's still a delicate dance to learn. Some days I get it right and others I end in pain.

But I wake to new mercies every day. I rest and start again, shut down and reboot, holding firm to the promise, " For what is seen is temporary, but what is unseen is eternal." (2 Cor. 4: 18)

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Mitochondrial Awareness Week (part 1)

Mitochondrial Awareness Week began two days ago. I'm late joining the discussion because I battle mitochondrial disease. Last weeks energy allotment and part of this weeks went to the great furniture exchange that took place when a doctor decided my grandmother will never return to her assisted living apartment last Wednesday. I received an influx of furniture Thursday and have been sorting through it ever since.

I used to clean out drawers and closets with ease. I used to carry things up and down stairs without thought. Now I wonder which step will lead to the one too many that will land me in front of the TV nursing undesired pain.

My joints held up better than I expected over the weekend, but as my husband said Sunday night, "It's going to take you a week to recover."

I just couldn't put thoughts on the page yesterday. Too much fog to write. Too much tired to concentrate. Joints that turned to jello due to too much activity were in need of rest to coagulate once again.

I'm getting there.

So in honor of mito awareness week, I'll begin by posting a photo taken at the event, Hope Flies, a yearly fund raiser for mito disease. Two of my favorite mito moms joined the fun and we snapped a fuzzy picture:

Tina and Lauri both have kids who have battled mito since birth. Their stories are far more intense than mine and I find great strength spending time with them and hearing how they manage the daily challenges we face.

And since I have to keep this short today, I'm going to close by linking to a video created by "MitoAction and students from CDIA in Boston". Take a minute and watch:

The Way Energy Is Made.

You'll understand our lives just a little bit more.

And no matter how my mito cooperate on one day verses another, I try to lean into these truths: He is my source and my strength. My song in the night. My joy in the day.

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Lost in Manhattan One Year Ago Today





Meet my 91 yr. old grandparents: Gladys and Merrill Hughes from Media, PA, just outside of Philly. They've lived there for as long as I can remember. When their health issues raised concerns last fall, I decided to overcome travel fears due to my unpredictable body and visit.

I was also motivated by Sam's college test scores which resulted in mail from a few Ivy League schools. Since Don's oldest son graduated from Yale, and they sent the most, we combined a trip to Philly with a visit to his son's Alma mater. When schedules took shape, our trip coincided with the tenth anniversary of 9/11.

After a night in Philly, my cautious grandparents detailed a route for us to travel to New Haven, avoiding New York and all its bridges. But as we drove north, I got edgy. I wanted to see the sky scrapers - especially that weekend.

My husband and son tolerated my urge and we diverted, ignoring weekend warnings of explosives and closed bridges. Within a hour or two, I took this photo  of the George Washington Bridge as worship music blared and a shadow of Manhattan shimmered to the right. For me, it was the equivalent of bungee jumping.

The back seat view.



On the morning of 9/11, Don and Sam took the official college tour. I stayed behind because I couldn't have kept pace. But when they came back hours later, Don had secured a wheelchair to take me to all his favorite places. 

Smiling at the beginning of tour #2. 

 

We ate in  the Harry Potter looking cafeteria which is located directly behind Sam. Then we toured a museum to the right which holds a copy of the Gutenberg Bible. We even touched the glass wrong and set off an alarm.

 

 

As we left the museum, several black SUV's pulled up outside the president's office. It was like an episode of NCIS. Ready for a break, we sat on a bench to see what was up. A photo op soon broke out and we learned top Air Force military personnel had arrived on campus for a signing ceremony, initiating the return of the ROTC program to the campus this fall.

 

 

Next, we hiked to another corner of the university where this cemetery commemorates the lives of some very famous people. Don loved to jog here when visiting his son. 



Getting tired on tour #2. 

Don pushed me in the chair on bumpy and smooth paths for two or three hours. He never tired as he relived family memories. But due to flight costs, we had to catch a plane out of Philly the next morning. So we saddled up and headed south.

We could have been predictable. We could have avoided NYC. But the closer we got, the closer I wanted to be, especially on the tenth anniversary.

So we paid tolls. Lots of tolls. We crossed bridges. We went the wrong way on a highway that cost us about thirty minutes. And then finally traveled through a tunnel with plans to turn left on the other side and just travel around the edge of Manhattan. But when we rose out of the depths and buildings loomed tall over us, we had no lane choice but to go straight into the city.

I was delighted. Don was dodging taxis. Sam just wanted to get to Philly.

Manhattan isn't that wide so when we turned left onto a major thoroughfare, I knew we were paralleling the highway we were supposed to be on. So while Don avoided collisions, I soaked in the tall skyscrapers, the rush of cars, and the very big feel of the island city that never ever sleeps.

We drove for a while, not totally sure where we were, but found signs to our highway, and turned. As we sat at a light, we suddenly realized we were looking straight at the new World Trade Center building. We didn't get out. Or stop and walk. My feet wouldn't have carried me far. But we got really close to ground zero, somewhat lost in Manhattan, on the tenth anniversary.

And for this mito deprived, slow walking, low energy bodied self, it was even close enough.

We paid more tolls, crossed another bridge, watched the moon rise over the Statue of Liberty, and called my grandparents to admit we'd arrive much later than planned.



Ice cream and strawberries were still waiting when we walked in.

 

 

 I gave way to tears on the airport shuttle the next morning due to sharp nerve pain in my feet. The trip took a toll.  But Don and I had shared more of our lives with each other. I learned about Yale. He experienced the town of Media and my grandparents. And all three of us got close to the heart of a national tragedy that's posted on magazine covers still today.

More importantly, I didn't cave to mito travel fears that weekend. No, we made rich, timeless memories instead.

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Debi and the Place of Deep Healing

Debbie and her sweet family

I met Debi this summer. Her radiant smile and blond curls defied the stage 4 cancer growing deep in her body. Drawn to her effervescence (and sweet girls), I purposed to stay in touch with her in the coming months.

So I've called her about once a week to get the latest update. And there's always an update. Debi has a clotting disorder and when a doctor placed a port in her chest about a month ago now, two clots formed, delaying chemo and forcing her back on coumadin shots.

It's complicated.

Two blood clots alone would frighten the normal person. But Debi's taken it all in stride. Crying at times. Laughing more. And just trying to live in the midst of head shaking trial.

She surprised me Thursday morning with an early call. I didn't recognize the number or check the message for hours cause I slept late that day. But when I heard the request from her perky voice, I plopped back on my bed, looked straight through ceiling, and said, "Really?"

Debi had called to ask me to attend a healing service with her that night. Sounds simple enough. But it was a service held at a church that once left my soul in great confusion. I've never doubted the impact of the congregation's monthly healing services but just couldn't bring myself to go. Even now it's hard to explain. Was it pride? Unforgiveness? Fear? Or just wounds that would not heal?

I don't know.

But even though different folks have mentioned the service here and there over the last few years, I've avoided going. Debi didn't know I had any ties to the church so her call seemed an innocent nudge from above. It was time. Time to face the past so I could walk more fully into my future.

What humors me most is that I thought I was called to minister to Debbie: ms. stage 4 cancer. But no. God used Debi to take me to a place a great pain to experience more of His healing.

And it was good. It really was. Good to see old friends. Good to soak in His presence. Good to face what was... to live more complete in what is.

I love it when God surprises me like that.

And I really love my new friend, Debi. Will you pray for her this week?

I've lost a husband to cancer. Am married to a man who lost his wife to cancer. And I've been sick now for years. But that doesn't change that James wrote,

"And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective." (James 5: 15, 16)

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Overcoming Funk (with a Mountain Top View)

I handed Grant my signed teacher contract this afternoon and told him I've spent the last few days overcoming funk. He smiled and said, "That should be the name of a rock band." Since I don't have plans for a rock band, I decided it worked for a blog entry.

Cause I'm overcoming funk.

I've had a story to tell but Sam's launch to Tech blurred with grandma's intensified battle against c-diff which ran right into a neuro-surgeon explaining the reasons why another back  surgery might work to my advantage. He meant well, but memories of post surgical pain sent me down under to the depths of funk.

Grandma's suffering. My leg needs help. And my home is quiet without my boys.

I won't overcome all the funk in one fell swoop. But today I'll remember how God touched me the weekend before the launch. Cause this moment meant a lot on the cusp of change...

We should have been in church. In fact, I'd entertained visions of all four of us lined in a pew, seated in God's house the day Nathan would leave after only two nights at home. But another option tugged at my heart. A memory yearned for a repeat.

And when a cool autumn breeze surprised me as I walked out the door dressed for an August Sunday service, I knew I couldn't sit still in church. So we turned around. Changed clothes. Packed a few things. And drove to Stone Mountain.

I had this crazy notion that I needed to sit high on top of that mountain before my boys headed off in different directions. We climbed the largest piece of exposed granite when they were young; even scaled the heights before dawn on an Easter morning one time. As we huddled in our matching train sweat shirts as the sun rose, I felt we could conquer anything - way back when - when my legs carried me step by step up the steep mountain side.

I couldn't climb the mountain two weeks ago. Couldn't even last outside very long in unusually cool summer heat.

So we rode the skyride and then made our way to my favorite edge and took in the clearest view I've ever seen from the top. Not only did we see a post card view of the Atlanta skyline, we saw a clear outline of the North Georgia Mountains. It was amazing.

Just to the right of this view, Kennesaw Mountain rose from the trees. The two cities seemed close from up high. In fact, everything seemed small and Lego like. I imagined God reaching his hand down and holding our car as we drove from one place to another, just like a child guides a toy car across the kitchen floor. No highways. Just trees, buildings, a few mountains, and a big blue sky that connected them all.

And I felt peace. Deep, abiding, peace.

Nathan drove on to Athens from the mountain and we headed home with only days before Sam left. As I drifted to sleep, it occurred to  me that had we walked to the back side of the mountain, we would have seen the city of Athens that day as well. From one vantage point, all three of our homes were visible and thus seemed closer together.

It probably won't always be this way. At some point there's a good chance all of our homes won't be visible from one mountain top. But they were a few weeks ago and it helped this mom let go.

I'll close with a favorite passage we used to recite in quiet and loud voices at bed time. It brought comfort then and is still a heart changer now. Cause He holds it all together. His view that is so different from ours. When we grasp just a glimpse of it; just a tiny sense of His perspective, the peace that only He can give becomes ours.

"Do you not know? Have you not heard?  Has it not been told you from the beginning? Have you not understood since the earth was founded?  He sits enthroned above the circle of the earth, and its people are like grasshoppers. He stretches out the heavens like a canopy, and spreads them out like a tent to live in. He brings princes to naught and reduces the rulers of this world to nothing. No sooner are they planted, no sooner are they sown, no sooner do they take root in the ground, than he blows on them and they wither, and a whirlwind sweeps them away like chaff. 

 

'To whom will you compare me? Or who is my equal?' says the Holy One. Lift up your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one and calls forth each of them by name. Because of his great power and mighty strength, not one of them is missing.

Why do you complain, Jacob? Why do you say, Israel,' My way is hidden from the Lord;
my cause is disregarded by my God'? Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40: 21 - 31) 

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Two Weeks of Living

Two weeks have passed since I last wrote, mostly because my 91 yr. old grandmother ended up in the hospital with a very contagious disease: c-diff. For those who have served as a caregiver, you know it takes time to resurface after long hours away from the norm. As I considered what to write today, I found photos from the last two weeks and decided to enjoy the memories made in the midst of the saga.

A doctor sent grandma to the hospital late in the afternoon. But earlier that day, Don and I took our granddaughter, Catherine, on a field trip. We picked her up from school, got Chick-fil-A, and went to a jumpy place. She's holding her Brave card which she almost left at school... but remembered to find where she changed clothes after morning play-in-the-sprinkler time.



Catherine was born with a diaphragmatic hernia, spent four months in a NICU, and endured countless surgeries before growing into the thriving child she is today. After playing for hours at the jumpy place, we went to McDonald's. The child that once required a feeding tube ate every drop of ice cream on her own... and danced with grandipa.



Back at our home, she made sure grandipa had all he needed for a cozy nap. Only a granddaughter could pull this off...

As we drove Catherine to her home, my sister called. Grandma had been admitted to the hospital due to A-fib and low blood pressure. But within 48 hours it became clear she had c-diff, an intestinal disorder resulting from too many antibiotics. C-diff is very contagious, thus we had to follow strict protocol while in her room. No eating. No drinking. Yellow marshmallow gowns. And latex gloves.

Five days in and still the yellow gowns. And three men in fluffy, golden attire:

Don, Sam, and my dad.



I got away long enough to spend a night at my mom and dads where their dog Lili smooths the rough places in my soul. Every time I visit, this silky creature jumps on my lap, places a paw on each shoulder, and lays her fuzzy neck across my face, offering her one of a kind canine hug. By the time I drove back home, Grandma had finished seven days in the hospital and was in a private nursing home room in her retirement village.

Lili even went to visit grandma this week and gave her a special hug.

My family has ministered in new ways, helping grandma through the last few weeks. While we've known her mind isn't as sharp as it once was, dealing with dementia 24/7 up close and personal has allowed for a different challenge. I repeated the same conversation at times almost every eight minutes as she repeatedly asked, "Why am I here? What's wrong with me? When can I go home?"

I've answered those questions so many creative, heartfelt ways only to be asked again. Which is why I'm glad I had a chance to share lunch with these girls and tell a story dear to my heart; my red rose God really loves us story that changed my life years ago. I try to tell it every year so I'll remember. Cause I forget. Like grandma. And God has to reassure me over and over.

After hours and days trying to calm grandma's repetitive worries, I wondered how God keeps up with us all. A chorus of concern must rise when our worries exceed our ability to believe and we ask why? and are you sure? yet again. Can you imagine what heaven hears on any given day?

Trying to keep grandma from a wrinkled brow for just two weeks wore me out.

So thanks Shanette, Blake, Anna, and Audrey, for coming over and letting me tell my story again.

It was good to remember after a week fighting to help another not forget.

"God also said to Moses, 'Say to the Israelites, ‘The Lord, the God of your fathers —the God of Abraham, the God of Isaac and the God of Jacob —has sent me to you.’ This is my name forever, the
name by which I am to be remembered from generation to generation." (Ex. 3: 15)

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Ready, Set, Launching

 I love these boys. They're very much the same and yet very much different. The one on the right is working towards a choral music education degree at UGA and couldn't take my call this week because he was teaching a voice lesson.

Hearing him say that was almost as surreal as watching him sing in church last Sunday. I've missed many of his calls due to teaching my own voice and piano lessons.

The similarities just about had me believing I'd been reincarnated. But then I remembered I'm still breathing and recalled the events in my kitchen last night. Differences do exist.

First, Nathan cooked fish and I've NEVER cooked fish. Never even purchased fish till I bought Tilapia at Publix last night. Second, I've NEVER succeeded in getting Sam to cook with me - let alone cook fish with me. The duo made Coconut Almond Crusted Tilapia with a Strawberry Kiwi Topping.

In these photos, they dip the fish in flour, then egg, and then in a bowl filled with coconut, chopped almonds, and Japanese Style Panko bread crumbs.

While the fish baked at 350 degrees for 12 minutes (turn them over half way), Nathan sauteed thick slices of strawberries and kiwi. Here's the end result. Yum!! And I don't really like to  eat fish.

Sam left this morning for a week in Florida to help at a camp for families with kids who are battling cancer. When he walked out the door, I looked at Don and said, "Launching, stage one." He comes home next Saturday for about three days and leaves again with my dad for an Amtrak ride through Glacier Park, Montana and will be gone another week, "Launching, stage two." Once home, he'll reside here for about a six days before moving into a dorm at Tech, "Launching, stage 3: Blast Off!"

Change is upon us.

But after spending two days at Georgia Tech orientation followed by a night in Athens with UGA boy last week, and then watching both cook fish in my kitchen, I think I'm ready for the launch.

I found out earlier this week that two stories of mine will be included in an anthology due out in October titled, Falling in Love with You. It will be available through www.oaktara.com and several other online retailers. Seems I'm launching as well.

I love my boys. Have loved being their mom full time. The coming weeks pose such a huge change. But change is good. Launching is good. And we're all in this for a plan and purpose far bigger than our own.

"Praise the Lord. How good it is to sing praises to our God, how pleasant and fitting to praise him!  The Lord builds up Jerusalem; he gathers the exiles of Israel. He heals the brokenhearted and binds up their wounds. He determines the number of stars and calls them each by name. Great is our Lord and mighty in power; his understanding has no limits." (Ps. 147: 1-5)

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Divine Chemotherapy

I have a theory. It's only a theory. But sometimes I think God doles out divine chemotherapy. If I'm right, then I feel confident I can count myself a recent recipient.

It works like this: God allows an unusual amount of life lessons to flow at one time. They fire in rapid succession to where there's little time for recovery in between. You gasp for breath, cry some tears, and wonder what you did wrong. You may even feel numb when things calm as if you're not even sure what you're supposed to feel anymore.

I've had this happen a few times in my life. And in the end, something good evolves.

When someone receives chemotherapy, the medicine destroys good and bad cells with the intention of destroying all the bad. The destruction of good ones is just collateral damage. In time, the good cells multiply again, essentially bringing the patient back to life - sometimes from the brink of death.

While God loves us completely as we are, life is a daily opportunity for growth, change, and a surrender to His likeness. Since we all battle habits, thought patterns, and destructive parts of who we are that don't need to exist, our loving Father allows circumstances to weed them out for our good. But that process of surrender is neither easy nor fun.

As I write, Fox News headlines flash through my brain. People have done outrageous things in the name of cleansing the soul and stomping out the devil. I'm not talking extremes here.

I'm just talking life.

"Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it." (Hebrews 12 : 10-11)

While that sums up my thoughts well, the next verse amuses me, especially since I'm about to see a podiatrist because a neurologist doesn't like the look of my right foot and ankle. It's not doing well. But read on...

"Therefore strengthen your feeble arms and weak knees. 'Make level paths for your feet', so that the lame may not be disabled, but rather healed." (Heb. 12: 12 - 13)

Even though it's painful, I'm grateful He keeps calling me to Him, pulling me close, digging deep in my soul, so that I "may not be disabled, but rather healed."

As my heart regenerates I'll hold to that promise. It all leads to healing, here and beyond.

PS: Sam just showed me this link. What a story. A fitting end to my post.

Jim Munroe - I Am Second

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What I Observed

I didn't take many photos at the beach this year. While on the sand I contemplated, What's up with my body?... not, What photo should I take? But on our last day, I made a list of my favorite memories. So while I struggled going from participator in fun to observer of the same, I got to see some cool things.

I've already written about the rainbows. But I'll start with them because I don't remember seeing so many rainbows in past years. And it was all about timing. Walking outdoors at the right moment. Being led by the divine to see His handiwork in the sky. A quiet whisper from heaven that all is well.

The first day I sat on the beach, Sam, and his two cousins, Trey and Josh, showed up. They waded into yellow flag waves and threw a frisbee. They flowed with the disk, up and down the beach, framed by a blue sky, a bright sun, and white caps. I wasn't with them in the water, but I liked what I observed.

A few days later, I caught all three stretched out in front of a TV, watching High School Musical 2. Stunned, I stayed long enough to make sure I hadn't mislabeled the show. But no, a corny Disney musical flick had my Sam's attention. He claimed Josh chose it. And since Josh is almost a teen, he could have been lured by the whole cute-Disney-girl thing. I'll never know. I just closed the door with a smile. Cousin bonding of a different kind observed.

As I walked from the pool on a dark side street the following night, the same three lay on their backs in the middle of the road, star gazing. Sam swore they had enough time to jump up if a car came. I wasn't so sure. But since they looked at peace with the world and seemed content to expand their horizons while bonding with pavement, I didn't insist on a change. I walked away, hoping a shooting star would fly across the night sky.

At some point the cousins (including Jess and her friend, Kimber) discovered they could play ultimate frisbee on the golf course in the late evening. They looked like grasshoppers from our balconies. As I stared out my bedroom window mid-week, two grasshoppers stopped throwing the frisbee and began - waltzing. I never heard why Josh (5' 5) got Trey (6' 4) to waltz with him on the golf course. But I know Josh recently won a waltz competition and I can only guess the open green had the lure of a dance floor. I wish all the grasshoppers had danced. But one of them threw the frisbee again and the running began instead.

The cousins sang, played guitar on our balconies, and gathered to work on Bible studies at different times during the week.  There was a lot to observe. And I sure am glad they have each other and that they had the chance to make such cool memories together.

My dad rented a boat the last day. I stayed behind due to sun and motion concerns. But I heard more great stories and saw this photo. My oldest had flown into town and got to spend the afternoon with everyone. So even Nathan was there when Jess discovered a seahorse swimming in the bay.

Counsins observed... a very good thing.

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Remembering Rainbows

Some days I enjoy the basics: laundry, vacuuming, cleaning the kitchen, an episode of The Mentalist. After the last two weeks, creating order in my home served as cheap therapy this afternoon. A week at the beach wore me out. A week moving grandma from the second to the third floor kept me from recovery.

I shouldn't complain about sun and sand but my feet didn't tolerate either well. Observing fun more than participating in it messed with my psyche and I'm still not back to myself. Truth is I'm probably trying to get used to the new normal and just haven't gotten there yet.

I keep thinking if I write about it, put it out there in black and white, then maybe my heart will lighten and the ankles calm. But it's day two on this blog attempt and I just broke for a nap. So I'll post a picture I took it at the end of our first full day of vacation.

We drove through serious rain to reach the panhandle. Downpours kept us indoors for most of that day. But as the sun set, I decided to get my toes in the sand.

As I drove from the bay side to the oceans edge, this rainbow grew with the sunset. The photo doesn't do it justice. But I loved the moment.

My arm hurt from driving. My ankles buzzed from too much car vibration. And I had used my red walker for the first time earlier in the day.

When the rainbow grew, it awoke child like wonder in me - especially a rainbow reflected in a sunset. For a moment the heaviness lifted and I chased it till I could capture it in a photo.

"I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Whenever I bring clouds over the earth and the rainbow appears in the clouds, I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life." (Gen.9: 13-15) 

Cross references:

1. Genesis 9:13 : ver 14; Eze 1:28; Rev 4:3; 10:1
2. Genesis 9:14 : S ver 13
3. Genesis 9:15 : S Ge 8:1; Ex 2:24; 6:5; 34:10; Lev 26:42, 45; Dt 7:9; Ps 89:34; 103:18; 105:8; 106:45; Eze 16:60
4. Genesis 9:15 : S Ge 8:21

By the last day of our trip, I knew I couldn't walk on the beach again. Maybe that will change some day. But after three trips to the waters edge and back, and one short jaunt down the beach, pain scared me away from the sand. So on our last night together, my mom and I sat on a porch area just shy of the beach and talked for over an hour. As we talked, a small sliver of rainbow came and went, shining its colors in a stormy sky. I don't know if you can see it in the photo, but when she took the picture there were actually two small rainbow segments in the background.

(The first is just above the yellow/orange tarp in the middle of the photo. The second, over to the right.)

When I write about weeks like this, I wonder if I sound self absorbed. After all, I was at the beach with a great view, family, and plenty to eat. But I know there are others like me, facing slow loss that keeps them from being who they once were. And today, I'm writing for them.

It's not easy. Don't know that it ever will be.

But what amazes me always is how God never fails to remind me He's here in the midst; His promises remain; His faithfulness will prevail.

The rainbow danced in the sky that Friday night. A calm reminder as I watched the ocean from a distance.

And today, I needed to remember.

A few hours after we left the porch with a view, something snapped under my right big toe. It wouldn't bend for days. I can bend it some now, but it's not back to normal. A neurologist referred me to a podiatrist and is wondering if I need more than the insoles the orthopaedic ordered.

Hmmm... rainbows, Susan, remember the rainbows.

Today I'll think about rainbows and heaven and the reality that all this makes sense in His grand order of things. God's character hasn't changed just because my ankles have weakened. Digging deeper and trusting just that is what today is about for me.

Check out Susan Schreer Davis on Itunes!

The FireFlyer Blog

I've been meaning to post this all week. But a day in the ER getting Sam's toe stitched and a Grandma move from one floor to another has tied up a lot of time. A story of mine was posted on the FireFlyer Blog while I was on vacation in Florida. I wrote it last February after spending over half the year working with the Ga Dept of Labor to get hand controls in my car. I wanted to write more before posting it, but today I'll let the story speak for itself.

Enjoy! And search the website. If you learn something new about mitochondrial disease, post it here. I'd love to read your responses.

http://mitochondrialdiseases.org/TheFireFlyer/disabled-but-still-me/

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Confetti and Creation

"For since the creation of the world God's invisible qualities--his eternal power and divine nature--have been clearly seen, being understood from what has been made, so that men are without excuse." (Rom. 1: 20)

I bought a package of confetti for Sam's graduation party and Papa tossed the colored pieces on the tables. Most of the non-biodegradable adornments made it to the trash but a few pieces still sparkle on my porch. I like them there. They're a tangible reminder of the fun we had.

A few months ago, a friend of Sam's asked if she could spend some time with me this summer. Since I can't walk very far I asked if she wanted to do a Bible study. In response, she asked if we could read Crazy Love by Francis Chan (2008) . She started it with a friend last summer and never finished it - a perfect fit to me.

So while a lot of the people I know have already read the book, I just started it two weeks ago. And I had a sweet time last Monday, sitting where I am now, reading passages from the book, watching videos from the web site, and basking in the bigness of God with a searching soul very much like mine.

Some favorite quotes:

"There is an epidemic of spiritual amnesia going around, and none of us is immune. No matter how many fascinating details we learn about God's creation, no matter how many pictures we see of his galaxies, and no matter how many sunsets we watch, we still forget." (pg. 29)

"In our world, where hundreds of things distract us from God, we have to intentionally and consistently remind ourselves of Him." (pg. 29)

"We are programmed to focus on what we don't have, bombarded multiple times throughout the day with what we need to buy that will make us feel happier or sexier or more at peace. This  dissatisfaction transfers over to our thinking about God. We forget that we already have everything we need in Him." (pg. 29)

Reminders abound. Flowers bloom. Birds sing. The sun rises and falls. Why do we go to  nature for peace? Because the King of Creation inhabits it all.

Remnants from Sam's party remind me of the sweet time we shared. How much more so are creation's reminders meant to turn our thoughts to the one who "brings out the starry hosts one by one, and calls them each by name..." (Is. 40: 26)

Crazy Love. It's all here to remind us of His Crazy Love.

Check out Susan Schreer Davis on Itunes!!

Red Walkers and Me

Memorial Day Weekend bored me. Don worked every day while I rested my legs. A week of graduation events wore them out and I had no choice but to sit still. So I googled adult walkers.

Walmart offers a decent collection but I haven't gotten the gumption to go for the purchase.  Momentum is slowly building. But since I experience semi-normal days, I struggle to accept I need a walker for things like high school graduation in the Georgia heat. But after melting in the hot sun and naïvely ignoring all signs for extra special handicap parking, it took me days to recover.

Four years ago, a Christian author named Cec Murphy offered me a scholarship to a writer's conference in California. I was thrilled with the opportunity but scared of the travel.  A mother of one of my voice students battled MS but since she was doing well, loaned me her walker. 

I only used it once before entering the airport to fly to San Jose but it eased my walk to the terminal. My legs stiffen when I sit too long, so when we landed, I waited till the plane emptied before trying to exit. I wanted to be inconspicuous.

In San Jose, however, we exited the plane via a large set of stairs onto the tarmac. As I started down,  I saw the aparatus on the concrete below. After maneuvering a few steps, however, I watched as baggage handlers seated a grandma type on my walker as if it was hers.

I couldn't speak; didn't want to speak; didn't want to claim it as my own.

But fortunately for me, a flight attendant who saw me enter the plane knew it was mine. Her proclamation, complete with hand motions, interrupted my thoughts, "That walker belongs to this lady!  That walker belongs to this lady!" As I continued down the stairs, everyone on the tarmac knew it belonged to me. And while it saved me during my time at Mt Hermon, I never quite adjusted to being the handicap girl with the walker.

There are many days I only need a cane. But there are others that I don't do things because I can't survive without extra assistance. So it's time.  It's time for me to buy my own red walker and be at peace with the change. 

So all I'm asking here and now is that if you happen to see me out (with a preferably shiny red one) that you'll look me in the eye and say, "Susan, you look lovely today." Cause chances are my insides will be aflutter and you'll be wondering if I've gotten worse.

It really doesn't mean I'm worse. It just means I'm accepting who I am... and that I might go to a baseball game and the zoo.

And that's some fun I'd like to do.

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Worship, a Party, and Egg Cracking Fun

Party remnants sit on my kitchen table. Plastic liners lay on my back porch. Gifts and cards clutter living room corners, reminding me of our Sunday celebration.

Last Sunday, Sam, his friend Micah, and a gifted cellist named Michael led worship during the Baccalaureate service. So even though Sam graduates today (in a mere seven hours) we partied after the service. 

This is Sam warming up before putting on black pants and tie.

This is Sam and Micah during the service.

Of all the graduation events I've attended in the last month, Baccalaureate was by far my favorite. I didn't even know Sam could sing and play the guitar a year ago. He held out on me and surprised our whole family by singing an anthem at our Sunday morning San Destin worship service last June.

He was inspired because he'd been asked to lead worship with Micah at their FCA meetings this year. Watching him sing Sunday was truly a gift.

Later, several of his Bible study friends stopped by our porch party. During a lull in the action, Jessica, my niece, asked me if I would support egg cracking fun one more time. She smacked eggs on Nathan's head just a few months ago during his birthday party. Bringing them out again seemed apropos.

She justified the fun based on a tradition I started years ago, when my boys completed first and third grade. Having survived my first Merry Month of May as a single mom of two school aged children, I could hardly contain my "school-is-out" joy. As we stood in the kitchen, I tried a prank. I made a fist and gently knocked it on Nathan's head, wanting him to think I was cracking an egg instead.

He didn't buy it.

So I got out a real egg.

When I gently tapped the real egg on his head, it actually cracked. I didn't mean for it to crack; didn't intend to be stuck with a partially destroyed egg in my hand while in an unpredictable state of mind. But there I was, facing two ready-to-pounce boys with an egg that couldn't go back in the refrigerator.

So I did the only thing I could do. I lifted it high and cracked it on my own head. It was therapeutic, freeing, and stunned my children. Nathan ran around looking for a camera while Sam stood in awe asking over and over, "Mommy, why did you do that?"

I doubled over in laughter as the yolk slid from my head to my shoe.

For years after, we cracked eggs on our heads on the last day of school. We even had an egg fight with cousins after dark one year.

It's been a while. Life sobered my inner child. But Jessica caught Sam up by handing out five eggs to eager friends. That takes care of eighth grade and beyond.

And he didn't see it coming.

Uncle George took the video while I caught some great still photos. So yes, when Sam picks up egg slime at the end and walks towards the camera, he was headed towards me. I got yoked. A massive chase took place after and retribution is still being planned. Jess will have to watch her back while on our yearly family vacation in a few weeks.

But it was worth it.

Worship was followed by light hearted fun at the end of a long four years. And it was very good.

"Sing to the Lord a new song for he has done marvelous things..." (Ps. 98: 1)




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Talking to Mountains and Mito Moms at Grace 17:20

Mito moms at Grace 17:20

We sat in dim, elegant lighting around white table linens. Thirteen of us, once Lauri and I found our way. A white rose adorned the middle, in honor of Ainsley who lost her battle to mito just last week. I didn't know everyone that well. But I drove across town to simply sit with moms who face what I face - and more - every day.

They speak mito speak. They understand the financial stress. They buy CoQ10, carnitine, riboflavin, and other ingredients to mix the "mito cocktail" for their kids. Their children battle seizures, asthma, kidney issues, autism, muscle weakness, and more. They can't handle too much heat or too much cold. Some require wheelchairs while others continue in physical therapy to stay strong.

The daily walk requires a different kind of strength. A different kind of faith. A surrender to a plan not our own.

I found this Bible verse on the restaurant website when I looked up directions. And I've been thinking about ever since. You can find it at this link:
http://www.grace1720.com/aboutus.html

( matt 17:20) "I tell you the truth, if you have faith as small as a mustard seed,
you can say to this mountain, 'move from here to there' and it will move.
Nothing will be impossible for you."

Those words confuse me sometimes cause I've talked to plenty of mountains that haven't seemed to move. Yet the verse says if we have the tiniest of faith, we can talk to mountains (or large impassable mounds of rock and dirt) and they'll listen. They'll even move... as in out-of-our-way move.

Every mom at that table faces mountains we long to see head on their way. And while I'm not sure what that shift would look like in the tangible, I know being with them gave me strength to keep conversing with my mountains; to tell them to go; to believe there's more than life in the shadows on this side.

"Nothing will be impossible for you."

That's a big statement in light of what everyone faces. But it's a promise I'm soaking in today after sitting at Grace 17:20 with moms like me... moms fighting everyday mito mountains, even when armed with only mustard seed faith.