As Bill prayed during his morning quiet time in early May of 2012, a verse came to mind, “And my God will meet all your needs according to the riches of his glory in Christ Jesus.” (Phil 4:19) At the time, the words didn’t connect for him. He had a steady job and all bills were paid.
Within the week, however, Bill learned that a government contract had not yet been renewed, forcing cutbacks. And he was laid off. As he reeled from the news, the verse came back to him; words that came to life in a new way.
Trusting God wasn’t anything new to Bill. He committed his life to Christ at church when he was ten. His dad died two years later, however, and his mom turned to alcohol. With little parental supervision, he wandered city streets at night. After high school, he joined the Marines, hoping to make a difference in the world.
He graduated with honors from Paris Island and earned another stripe before leaving Camp Pendleton. So when he arrived in Vietnam, he was assigned to the Provost Marshal’s office in the city of De Nang.
“When I chose the Marines,” he recalled, “I went in for the right reasons. I enjoyed the freedoms we have in this country and knew that under communism, other people wouldn’t have them. I was idealistic, grateful, patriotic—and dysfunctional after years of living with an alcoholic mom.”
“War gives you a place to blame and hide,” he continued, “So I was soon influenced by the corruption around me. I became hardened as the months passed. And about ten months into my tour, almost broke.”
“I had gone to part of the city that served as a staging area for the incoming dead and wounded. Helicopters hovered overhead, waiting for a place to land. I walked among the injured and saw a friend of mine from Paris Island who had been blown to bits. I held his hand before going outside and weeping due to the ugliness of it all.”
“I cried out to God that night and know He heard me. But I still needed a lot of healing. My mom had sent me papers from back home that reported talks of a truce when people were getting killed all around us. The government reported what they wanted people to hear. And while I respect that there were those who were against the war, my life was on the line because I wanted to help.”
When he got home, Bill felt pressure—like many Vietnam Veterans—to bury the memories. He quickly abandoned his uniform and battled serious confusion. Between the societal rejection and the realities of war, the emotional baggage became too much to bear.
Bill succumbed to the hippy lifestyle and lived the next two years in a drunken blur.. When his mother died from the ravages alcoholism, he received a small inheritance and decided to leave home.
He flew to Europe and traveled slowly to Greece, Pakistan and on to Iran. He wandered the world doing drugs, sleeping in parks, living with hippies, and trying to find life.
He found it—or rather God found him—in Kathmandu, Nepal.
A short illness forced him to stay in a local hospital. While there, a man visited him who was connected with a house run by YWAM (Youth with a Mission). The visit led Bill to find a Bible in the hospital library. The familiar stories brought comfort so not long after he was released from the hospital, he visited the YWAM home. Missionaries offered him a place to stay but only after a short quarantine to rid him of lice.
While he was resting in a basement room, a couple from England arrived. They had traveled to India after following an inner nudge from God. While visiting the YWAM location, they asked if there was anyone else at the house. The locals replied, “Just the crazy American guy down stairs.”
The next day, the couple met with Bill and prayed. And when they prayed, something happened. Bill remembers them saying, “We have no power of our own. But there is power in the name of Jesus Christ. And in His name, we bind the fear and darkness that have plagued your life.”
“I felt things fall off of me,” Bill recalled. “I was different. My hardened heart began to soften.”
Bill left for England soon after and lived in community with the couple and other believers who prayed for him and spoke life as God continued a deep healing. He met his wife Rosemary there and they’ve served God together ever since.
So when Bill came home with no job last year and the two faced the financial challenge, they knew where to turn—they knew to pray. Because the same God that heard Bill’s cry in Vietnam and met him in Kathmandu was more than able to provide their every need.
And He did with a bonus—after six months, the government contract was renewed and Bill got his job back.
“My God will meet all your needs…”
Friday, October 25, 2013
Friday, October 11, 2013
Forty-Four Years and the Birthday Blahs
It's my birthday. Today. The sun shines bright. Mom's Cavalier King Charles prowls in search of shadows. And plaster and gauze cover my right leg from the knee down, six days post ankle reconstruction surgery. Again.
Yes, I'm a little down. Even on my birthday.
Last summer, we celebrated closing our store Go Fish with a party on the premises about a month after my back fusion. My right ankle was loose and held together in a brace. Hazel, my grand-daughter, asked about the ankle and I explained how my ligaments get loose. She looked at me with big, brown, sympathetic eyes and said, "You're getting old, Susu."
She's right. And I feel it today.
Forty-four years old.
I have a life list: Widowed at twenty seven; single parented for ten years; mobility issues by age 36; mitochondrial disease diagnosed in me and my son by age 40; six major orthopedic operations by my 44th birthday, four on my ankles, two on my back. And depending on how I heal, my right knee and shoulder may require reconstructions sooner than later.
It overwhelms me today.
But 2 Corinthians 4: 8 - 10 states, "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may be revealed in our body."
I don't often think about carrying the death of Jesus in my body so that His life may revealed in the same. But Biblical truth makes it clear, through suffering, we become more like Him. And I'm certainly not the only one with a life list to share.
My friend Paige is facing a crazy surgery to insert wires in her face in an attempt to squelch the constant trigeminal neuralgia pain that haunts her days. Referred to as the suicide nerve, Paige never dreamed she'd be fighting frightful pain, just trying to maintain in her mid-forties too.
My friend Amy is the mother eight - or seven. I forget the count. Her youngest requires a feeding tube due to the affects of mito and several of her kids now show symptoms too. Amy lives with a cyst of fluid in her spine that could leave her paralyzed at any moment. There's fancy name for it, "syringomyelia", a medical term I'm sure she never dreamed she'd be researching in her forties either.
Lorna adopted two children from China years ago, not aware that one of them had a metabolic disorder that would lead to more hospital stays than I can count in recent years. Penelope is in Scottish Right Hospital today. On my birthday. In ICU. Fighting infections the likes I've only read about.
I'm not alone. In fact, before anesthesia affected emotions and logic, I relished the fact I live in a country and maintain health insurance that allows for surgery after surgery. My niece, Jessica, spent five weeks in Kenya last summer, serving at Tenwick Hospital. She came home with stories that humbled me.
The fact I live in a day and age where they can keep fixing my joints is quite miraculous. Painful and tiring, yes. But my ankles are strong today because two deceased people donated body parts that allow me to walk with cadaver tendons.
So, I'm breathing today. Carrying the death of Jesus and two other souls in my body to keep making whatever difference I can in this world.
So I will rest. Write. And enjoy another Happy Birthday to me.
Yes, I'm a little down. Even on my birthday.
Last summer, we celebrated closing our store Go Fish with a party on the premises about a month after my back fusion. My right ankle was loose and held together in a brace. Hazel, my grand-daughter, asked about the ankle and I explained how my ligaments get loose. She looked at me with big, brown, sympathetic eyes and said, "You're getting old, Susu."
She's right. And I feel it today.
Forty-four years old.
I have a life list: Widowed at twenty seven; single parented for ten years; mobility issues by age 36; mitochondrial disease diagnosed in me and my son by age 40; six major orthopedic operations by my 44th birthday, four on my ankles, two on my back. And depending on how I heal, my right knee and shoulder may require reconstructions sooner than later.
It overwhelms me today.
But 2 Corinthians 4: 8 - 10 states, "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may be revealed in our body."
I don't often think about carrying the death of Jesus in my body so that His life may revealed in the same. But Biblical truth makes it clear, through suffering, we become more like Him. And I'm certainly not the only one with a life list to share.
My friend Paige is facing a crazy surgery to insert wires in her face in an attempt to squelch the constant trigeminal neuralgia pain that haunts her days. Referred to as the suicide nerve, Paige never dreamed she'd be fighting frightful pain, just trying to maintain in her mid-forties too.
My friend Amy is the mother eight - or seven. I forget the count. Her youngest requires a feeding tube due to the affects of mito and several of her kids now show symptoms too. Amy lives with a cyst of fluid in her spine that could leave her paralyzed at any moment. There's fancy name for it, "syringomyelia", a medical term I'm sure she never dreamed she'd be researching in her forties either.
Lorna adopted two children from China years ago, not aware that one of them had a metabolic disorder that would lead to more hospital stays than I can count in recent years. Penelope is in Scottish Right Hospital today. On my birthday. In ICU. Fighting infections the likes I've only read about.
I'm not alone. In fact, before anesthesia affected emotions and logic, I relished the fact I live in a country and maintain health insurance that allows for surgery after surgery. My niece, Jessica, spent five weeks in Kenya last summer, serving at Tenwick Hospital. She came home with stories that humbled me.
The fact I live in a day and age where they can keep fixing my joints is quite miraculous. Painful and tiring, yes. But my ankles are strong today because two deceased people donated body parts that allow me to walk with cadaver tendons.
So, I'm breathing today. Carrying the death of Jesus and two other souls in my body to keep making whatever difference I can in this world.
So I will rest. Write. And enjoy another Happy Birthday to me.
Monday, September 30, 2013
A Song for Don
My dad called about six months ago and asked if I would join his Barbershop Quartet during a benefit concert for The Higher Standards Foundation that took place last week. I jumped at the opportunity since I hadn't sung in a concert in years. But with back surgery and school starting, I didn't put much thought into the event for quite some time.
About a month ago, however, a chorus started forming in my mind. The first line of a verse stayed with me for weeks but never grew on it's own to more... until last week. Because the more I thought about the opportunity, the more I realized it was the perfect time to surprise Don with a song.
And so I did. I closed my three song set with a song for us.
I finished composing it with barely enough time to solidify the part in my fingers and head. So it's not exactly what I planned. But my sister recorded the debut and due to how special it was doting on my man, I'll put perfection aside and share the video.
But first, the words:
About a month ago, however, a chorus started forming in my mind. The first line of a verse stayed with me for weeks but never grew on it's own to more... until last week. Because the more I thought about the opportunity, the more I realized it was the perfect time to surprise Don with a song.
And so I did. I closed my three song set with a song for us.
I finished composing it with barely enough time to solidify the part in my fingers and head. So it's not exactly what I planned. But my sister recorded the debut and due to how special it was doting on my man, I'll put perfection aside and share the video.
But first, the words:
Finally Finding Me
(Vs. 1)
Who knew, everything that we'd do through.
Who knew all the hurtful things we'd say.
But the years kept rolling by and we kept trying
So I can truly say that my tears are drying
(chorus)
Cause I'm finally finding me after all this time
I'm finally finding me right here by your side
I'm finally finding me here in your arms
And it doesn't matter what all went wrong
Love kept us strong.
(vs. 2)
Who knows the day ahead when morning dawns
Who knows what life will bring our way
But as we keep holding hands as we're sipping coffee
I think that we can face any coming heartache
(chorus)
(bridge)
We will laugh, we will cry, we will sing
We will dance, till we reach, eternity
(chorus)
Sunday, September 22, 2013
More about Me and this Fatigue Causin' Disease
No. I'm not excited.
When Dr. Tucker, my ankle surgeon, first pulled on my LEFT ankle last December and declared it in need of a reconstruction, my RIGHT ankle was fine. Strong. In tact. After pushing my scooter for three months and carrying the weight of mobility, however, Dr. Tucker declared the RIGHT ankle unstable.
While the left healed, the right went defunct.
There was enough reason to wonder if back issues caused the decline, so neurology, neuro-surgery, and podiatry doctors pointed me towards the back fusion. That was June 18th. While my legs move forward with greater ease due to the procedure, I walked till my right ankle quit working a week ago last Wednesday night.
I'd been concerned. Even saw the podiatrist a month ago after a bruise the size of a half dollar appeared on the back of my ankle after a walk on the porch. But he remained hopeful so I kept walking. With a brace. Till one day I counted the hours till I got home to the boot.
It's hard to describe, but without the star wars boot holding my ankle and lower leg in place, it feels like my limb is unhinged. Loose at every joint. Meaning, it's time for a reconstruction... again.
Many young children with mito disease receive daily sustenance from gastro-tubes carried in back packs. An adult friend of mine suffers with serious lung and immunology issues. Others live with autism, vision loss, debilitating fatigue, severe nerve pain, and much more. The symptom list is long and varied.
So the fact my joints give out is not such a big deal in the big scheme of things.
But I battle concern about how my LEFT ankle will respond to months of extra strain. The hope is that it will hold; that the cadaver tendon will prove able. It likes my new purple, black, and white running shoe which I purchased (instead of writing!) after my left leg ached one night this week.
But only time will tell.
So if you think of me will you pray? Pray that Strength Will Rise. That God's power will fuel my muscles enough to get through another surgery. And that I will have wisdom concerning when to rest and when to push forward. It's a delicate balance. A hard one to live.
"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: 30-31)
Tuesday, September 17, 2013
Katie's Tape Kreations
This link speaks for itself and deserves it's own platform.
Please take a minute and meet a middle school girl rising above mitochondrial disease:
Monday, September 16, 2013
What Mitochondrial Disease Means to Me...and Others
I sang with our worship team yesterday morning. I haven't attempted such a thing in over a year and there's a reason why. I have mitochondrial disease.
Mitochondria power our cells, meaning they fuel our bodies. When you have mitochondrial disease, your mitochondria don't power very well. And things go awry.
When I smuggled Bibles into China years ago, we walked down dark streets one night to visit an illicit underground church. Dimly lit apartments added to the heavy oppression I felt as we snuck down the almost black alleyway. Thirty watt bulbs did little to show the way.
Some days it feels like I live in one of those dimly lit rooms. And it's hard to shine; hard to live fully.
To prepare for singing from 7:15 am - 1:15 pm Sunday morning, I rested all day Saturday. In bed over half the day resting. And when we were done, I ate a small lunch and crashed for another two hours and didn't let myself even run a small errand, knowing I could pay for it later this week.
I often look good when I'm out. Hair fixed. Make up on. Bright colored clothes. Dangling earrings. But there's a lot of planning that goes into how I live. A lot of limits that must be adhered to or I'll crash. My body will stop going forward.
While I struggle daily, weekly, monthly, there are many whose fight is much worse. I'll close today with a video introducing you to some them. The background is the accompaniment track to a song I wrote. A full chorus (with me singing) plays at the end. I'll highlight the entire song another day this week. But for now, meet some brave souls who live, smile, and overcome every day.
Mitochondria power our cells, meaning they fuel our bodies. When you have mitochondrial disease, your mitochondria don't power very well. And things go awry.
When I smuggled Bibles into China years ago, we walked down dark streets one night to visit an illicit underground church. Dimly lit apartments added to the heavy oppression I felt as we snuck down the almost black alleyway. Thirty watt bulbs did little to show the way.
Some days it feels like I live in one of those dimly lit rooms. And it's hard to shine; hard to live fully.
To prepare for singing from 7:15 am - 1:15 pm Sunday morning, I rested all day Saturday. In bed over half the day resting. And when we were done, I ate a small lunch and crashed for another two hours and didn't let myself even run a small errand, knowing I could pay for it later this week.
I often look good when I'm out. Hair fixed. Make up on. Bright colored clothes. Dangling earrings. But there's a lot of planning that goes into how I live. A lot of limits that must be adhered to or I'll crash. My body will stop going forward.
While I struggle daily, weekly, monthly, there are many whose fight is much worse. I'll close today with a video introducing you to some them. The background is the accompaniment track to a song I wrote. A full chorus (with me singing) plays at the end. I'll highlight the entire song another day this week. But for now, meet some brave souls who live, smile, and overcome every day.
Tuesday, September 10, 2013
August Together Time
The month of August passed with few blog updates. There's a reason. Husband was home.
After years of owning our own business, the doors to Go Fish on the Marietta Square closed in late July. While the sunshine store often made me smile, I haven't missed the grind one bit. We didn't go on a big trip or scale a high mountain this last month. But we lived normal, together, in a way we haven't in years.
Here's what I enjoyed most:
1) On Don's first free Saturday, we strolled through Target together. Hand in hand. Seriously. We even sat on the big red ball outside the store just to soak in the moment.
2) We hosted Penny (our nineteen month old granddaughter) for a night and even took her to church. When she cried, Don laid on the floor next to the pack n play and comforted her till she fell back asleep. No hurry. No worries. Just baby fun.
3) We drove to Don's family farm and cooked several meals for the folks down there. Don even stayed four nights instead of his traditional hurry down and back in between Saturday night and Monday morning open store hours. Fields of cotton. Wide open land. And Brave's baseball, baby.
4) Don hung new pictures and fixtures, fixed an upstairs closet door, scrubbed, caulked, and painted half of our outside home, put in a new microwave, and straightened the downstairs so he now has a man cave to enjoy. Relishing home. A simple pleasure.
5) We cooked a meal for friends last weekend and sat around their table sharing farm stories. When Don told a childhood story about running to the chicken house in his underwear when the dog howled at night, the teenage girls giggled in the girly way I miss when only boys eat around my table. Their laughter meant even more knowing their mom is battling stage four cancer. The rich sound still lingers.
6) And how can I forget Labor Day Weekend? Not only did we spend each day together (something that hasn't occurred on a holiday weekend in years) but we bought a wedding suit for Sam's upcoming nuptials. One of the things I missed most as a widowed mom was having a spouse with me during life's big "kid growing" moments. As a result, I battled my share of anger when our store kept Don from being with me on many parenting occasions after we married.
But he was there on Labor Day - the day we all gathered and bought a suit not only for Sam but for Nathan and his groomsmen cousins as well. And it tasted as sweet and refreshing as a cup of coolest lemonade on a hot, humid, southern day.
Don started a new job today. But we had August. Just being together. Cooking. Cleaning. Shopping. Reading. And enjoying the company of God's chosen companion.
Together time. We relished sweet together time.
After years of owning our own business, the doors to Go Fish on the Marietta Square closed in late July. While the sunshine store often made me smile, I haven't missed the grind one bit. We didn't go on a big trip or scale a high mountain this last month. But we lived normal, together, in a way we haven't in years.
Here's what I enjoyed most:
1) On Don's first free Saturday, we strolled through Target together. Hand in hand. Seriously. We even sat on the big red ball outside the store just to soak in the moment.
2) We hosted Penny (our nineteen month old granddaughter) for a night and even took her to church. When she cried, Don laid on the floor next to the pack n play and comforted her till she fell back asleep. No hurry. No worries. Just baby fun.
3) We drove to Don's family farm and cooked several meals for the folks down there. Don even stayed four nights instead of his traditional hurry down and back in between Saturday night and Monday morning open store hours. Fields of cotton. Wide open land. And Brave's baseball, baby.
4) Don hung new pictures and fixtures, fixed an upstairs closet door, scrubbed, caulked, and painted half of our outside home, put in a new microwave, and straightened the downstairs so he now has a man cave to enjoy. Relishing home. A simple pleasure.
5) We cooked a meal for friends last weekend and sat around their table sharing farm stories. When Don told a childhood story about running to the chicken house in his underwear when the dog howled at night, the teenage girls giggled in the girly way I miss when only boys eat around my table. Their laughter meant even more knowing their mom is battling stage four cancer. The rich sound still lingers.
6) And how can I forget Labor Day Weekend? Not only did we spend each day together (something that hasn't occurred on a holiday weekend in years) but we bought a wedding suit for Sam's upcoming nuptials. One of the things I missed most as a widowed mom was having a spouse with me during life's big "kid growing" moments. As a result, I battled my share of anger when our store kept Don from being with me on many parenting occasions after we married.
But he was there on Labor Day - the day we all gathered and bought a suit not only for Sam but for Nathan and his groomsmen cousins as well. And it tasted as sweet and refreshing as a cup of coolest lemonade on a hot, humid, southern day.
Don started a new job today. But we had August. Just being together. Cooking. Cleaning. Shopping. Reading. And enjoying the company of God's chosen companion.
Together time. We relished sweet together time.
Wednesday, August 28, 2013
Savoring Another Seven - This Time in Years
Hubby and I are sharing late morning coffee far across the
table from each other. He has the plague and I desire health. The sofa afforded
a decent nights sleep after pain pills dulled a sharp pain in my back. I pulled
muscle in my right shoulder blade yesterday while adjusting my ponytail.
Breathing became a challenge. And I wondered if that meant I shouldn't be
wearing a ponytail at 43 years of age.
Don't have that answer but we're both a little better today!
We celebrated seven years of marriage Monday night. Seven.
Years. I didn't make it past six years and four months last go round. A brain
tumor cut my journey with the artist short. And now I'm married to a GA Tech
grad who grew up on a farm in south Georgia and lettered in sports in college.
Polar opposites. Very. Different. Men. Which is why it's
taken us seven years to figure things out.
But we splurged at The Melting Pot Monday night and as I
drooled over the memory, the name took on more meaning. Our families will
probably never blend the way we hoped. But after time together on Saturday, I
recognized a new peace among us all. Time has melted hearts, leading to greater
acceptance.
But seven years? Really? Had I known it would take that
long, I might never have walked down the aisle.
One thing I know, God cares more about molding me into His
likeness than keeping me comfortable. Living with the artist brought my
creative soul to life. My sensitivity had a purpose, an outlet, after years of
just stirring confusion.
The Tech grad has done just the opposite. After years of
indulging my emotional side, God has used him to bring greater balance. I
haven't liked it at times. I've often asked, "How many care buttons must I
turn down before I get it?"
But I'm stronger now. More balanced. Less affected by what
people think. It really is good. And the Tech guy with a writer's soul has been
a crucial part of that.
So I'm grateful for understanding after seven hard years.
For a night at the Melting Pot where we laughed, grew, and remembered why we
fell in love.
"Though one may be overpowered, two can defend
themselves. A cord of three strands is not quickly broken." (Ecc. 4:12)
PS - I read this to hubby and in true GA Tech fashion he
replied, "I have a name... It's Don." : )
Wednesday, August 7, 2013
The Seventh Week Saturday Miracle
It's now been seven weeks since I underwent back surgery to fuse L-5 / S-1. And something remarkable is happening.
It started a few weeks ago when friends commented that I look more stable, making me realize I'd stopped reaching for my cane or walker as much. But since I was still on extra meds post the procedure, I waited to draw any conclusions.
While cleaning out my closet last Saturday, however, I pulled down the basket of shoes I keep high on a shelf. It's fairly empty since I gave away most of my previous shoes over the seven years I've not walked normally. But I never parted with the dressy black heels.
They adorned my feet the night my left ankle first seemed weak in early Dec. '05. Within months my legs moved forward in stiff awkward motions. By February of '06, I walked through a drug store, holding a buggy for balance and thought, This is why people use walkers.
The feeling came and went for over five years before docs diagnosed mitochondrial disease and cerebral folate deficiency. But a few months before the diagnosis, I fell, requiring ankle and back surgery. I woke from the back surgery with concern for my right leg. And in time, it only grew worse.
I've probably had an MRI of my lower back almost every year since this began. But even when a neuro surgeon discussed the fusion option last summer, conflicting opinions kept me hesitant about moving forward with another surgery. In time, my left ankle gave out and I couldn't avoid a reconstruction. As I recovered from that procedure, the right leg grew weaker still. By the time I headed to the hospital for the fusion in mid-June, it was clear something had to be done or I might end up in a wheelchair.
I recovered much better from this back surgery than the one before. But I never expected to pull out the black heels and walk in my living room like most women... only seven weeks later.
I called Don right away and he suggested, "Why don't you take them off after five minutes."
I promised I would and then called my mom while still strutting around the house. After celebrating with her, I called my sister who asked, "How long have you been in them now?"
"Oh, about ten minutes..."
"Take them off, Susan. Right now, "she said in a commanding voice older siblings use, "Promise me you'll take them off."
My family knows my medical history too well so I obliged.
It's hard to describe the feeling. Hard to explain the thoughts that go through my mind as day after day goes by and my legs keep working and my ankles and feet move forward in smooth motion, absent any sign of foot slap.
I wonder about white water or a stroll on the beach or just a vacation without constant thought as to how long my legs will last. Maybe I'll fly across the country again or take that vacation I've wanted to take with my boys but couldn't figure out how to manage.
I don't know. And even though something seems remarkably different, I'm still cautiously optimistic. I've had swings forward only to have another joint betray the progress.
But I wanted to share my Saturday miracle because so many of you have walked this journey with me and prayed and believed when my faith was small. I don't why one of those MRI's never made the problem clear. But I sure am thankful for the way I feel right now. And that is enough.
"For everything there is a season..." (Ecc. 3:1)
It started a few weeks ago when friends commented that I look more stable, making me realize I'd stopped reaching for my cane or walker as much. But since I was still on extra meds post the procedure, I waited to draw any conclusions.
While cleaning out my closet last Saturday, however, I pulled down the basket of shoes I keep high on a shelf. It's fairly empty since I gave away most of my previous shoes over the seven years I've not walked normally. But I never parted with the dressy black heels.
They adorned my feet the night my left ankle first seemed weak in early Dec. '05. Within months my legs moved forward in stiff awkward motions. By February of '06, I walked through a drug store, holding a buggy for balance and thought, This is why people use walkers.
The feeling came and went for over five years before docs diagnosed mitochondrial disease and cerebral folate deficiency. But a few months before the diagnosis, I fell, requiring ankle and back surgery. I woke from the back surgery with concern for my right leg. And in time, it only grew worse.
I've probably had an MRI of my lower back almost every year since this began. But even when a neuro surgeon discussed the fusion option last summer, conflicting opinions kept me hesitant about moving forward with another surgery. In time, my left ankle gave out and I couldn't avoid a reconstruction. As I recovered from that procedure, the right leg grew weaker still. By the time I headed to the hospital for the fusion in mid-June, it was clear something had to be done or I might end up in a wheelchair.
I recovered much better from this back surgery than the one before. But I never expected to pull out the black heels and walk in my living room like most women... only seven weeks later.
Nina Golby Sandals |
I called Don right away and he suggested, "Why don't you take them off after five minutes."
I promised I would and then called my mom while still strutting around the house. After celebrating with her, I called my sister who asked, "How long have you been in them now?"
"Oh, about ten minutes..."
"Take them off, Susan. Right now, "she said in a commanding voice older siblings use, "Promise me you'll take them off."
My family knows my medical history too well so I obliged.
It's hard to describe the feeling. Hard to explain the thoughts that go through my mind as day after day goes by and my legs keep working and my ankles and feet move forward in smooth motion, absent any sign of foot slap.
I wonder about white water or a stroll on the beach or just a vacation without constant thought as to how long my legs will last. Maybe I'll fly across the country again or take that vacation I've wanted to take with my boys but couldn't figure out how to manage.
I don't know. And even though something seems remarkably different, I'm still cautiously optimistic. I've had swings forward only to have another joint betray the progress.
But I wanted to share my Saturday miracle because so many of you have walked this journey with me and prayed and believed when my faith was small. I don't why one of those MRI's never made the problem clear. But I sure am thankful for the way I feel right now. And that is enough.
"For everything there is a season..." (Ecc. 3:1)
Tuesday, July 30, 2013
Goodbye Go Fish... Hello New Life
While our store closed its doors to retail customers last Tuesday, Don and I have spent a week cleaning out the space. Our lease is up tomorrow at midnight, so within forty eight hours, we'll have officially left the retail business behind.
When we made the decision to leave this season of our lives, Don knew a lot of folks would ask why... and they did, day after day as the closing drew near. Don answered the question many times in the store, but after encountering a few worried faces of my own, I decided to share our thoughts on the change.
The fact that our store made money through the recent financial crisis is a testament to my husband's detailed nature. He kept close watch on inventory and bank deposits and even learned how to catch shop lifters with finesse. But for whatever reason, our Go Fish store never made enough money to provide an income or make up for lost family time.
In many ways, the store was Don's mission field. He often said he didn't want to shy away from being a "light on the Marietta Square" if that was where God wanted us to be. But as winter turned to spring and then on to summer this year, our profits dramatically declined, and every big money making event on the square was cancelled due to rain. When officials called off the July Fourth festivities, the dismal holiday served as a poetic end to a non-stop five plus years.
I'll miss our sunshine store and know lots of folks will miss talking to Don and having a place to share their hearts and be lifted up in prayer. I got my hair cut across town last spring and when the receptionist commented on my earrings, I told her they were from Go Fish. Her excitement overflowed when she realized Don was my husband, and then she proceeded to explain how much he'd encouraged her through a rough patch in her life.
A stranger across town espoused the goodness of my man. So I know he will be missed.
But while ministering to others in the store has been a blessing for Don on many levels, we've missed him at home. So it was easy to throw a party last Tuesday when we closed the doors to the public for the last time. Don's "in town" kids came with grandchildren in tow. Pizza, cake, music, and grand kids. We had some fun.
As Don locked the door after Hazel left with Penny and her mom, Hazel got a panicked look and yelled through the glass door, "Grandipa, you need to leave now and get a job!!" After reassuring her that he didn't have to leave at just that moment to get a job, Hazel went home to bed.
But since many have asked, I'll let you know that Don's had a few interviews that seem promising and another coming up. So keep praying for us and him. We know God has it under control, but we always appreciate the prayers of the saints.
And for those who shopped at our sunshine store, thanks for your years of patronage. We have many wonderful memories and will miss meeting so many great folks.
But for everything there is a season, and it's time for a new thing for us.
Our faithful employees, Linnette, Muriel, and Carol, after weeks of big sales. They stayed with us to the end and we're so grateful!! |
We closed on Kelly's birthday (Don's number two son) so we got a cake for multiple reasons!! |
Hazel and Catherine enjoyed cake!! |
And Penny REALLY enjoyed cake!! More than one piece even. |
Baby Adam received his first flying lesson... |
And we took one last photo of the Go Fish team together. |
Then we cranked up the music and the running and dancing began. My video won't upload. But man we had fun with screaming, running, crazy kids and grown ups. |
Grandipa with Penny when someone turned out the lights! |
These boots were made for walking... |
... and that's just what they'll do... |
But since many have asked, I'll let you know that Don's had a few interviews that seem promising and another coming up. So keep praying for us and him. We know God has it under control, but we always appreciate the prayers of the saints.
And for those who shopped at our sunshine store, thanks for your years of patronage. We have many wonderful memories and will miss meeting so many great folks.
But for everything there is a season, and it's time for a new thing for us.
Monday, July 15, 2013
So You Want to Get Married... Seriously?
A Star Wars boot covered my left leg. Narcotics kept pain at bay. I had started physical therapy and taken my first steps post ankle reconstruction. But the recovery was still underway when my nineteen year old, freshman in college decided he wanted to get married.
Yikes.
Brain fuses blew. My heart stretched wide, beating rapid under fire. After lengthy discussions I told him I needed a few weeks to learn to walk again before offering any blessings toward upcoming nuptials. Part of me hoped he'd waken to reason, but I knew him well enough to face the fact that once something grabs hold of him, there's no shaking it off.
I wrote a story about Sam years ago that still defines our relationship. It was printed in a Focus on the Family magazine but is still available here: Keeping the Bond
Basically, Sam has always pushed me out of my comfort zone. Parenting him required constant leaps from my familiar. I recognized the pattern when he innocently asked me to watch the Star Wars movies with him, which meant facing my deepest childhood fear: Darth Vader. Ask my family. I left before the end of The Empire Strikes Back at age ten and hid in the theater bathroom.
But I watched the movies with Sam. And continued to lean his way the best I knew how time and again. But marriage his sophomore year in College? Are you kidding? He doesn't even keep his bedroom clean.
But a series of articles began to appear. I'll link them in case you have interest. But in time, I couldn't deny that God seemed to keep easing my panic and reminding me His plan for my youngest has always been a little different.
World Magazine: The Great Man Hunt
Today's Christianity Blog
The Atlantic
And the more I watched Sam with Courtney, the more my reservations gave way to blessing. He doesn't need my permission. But I appreciated a few months to process it all. In the end, since we both have mitochondrial disease and he's watched me struggle to walk for years now, it was really hard to argue with the statement, "Mom, I want to get married young and have kids young because I don't know if I'll be able to walk when I'm forty."
So here's the photos that cinched it for me. While Courtney was in South America on a study abroad trip, Sam ordered a ring and had the stone set so he could propose the moment she got back. And that's what he did:
Yikes.
Brain fuses blew. My heart stretched wide, beating rapid under fire. After lengthy discussions I told him I needed a few weeks to learn to walk again before offering any blessings toward upcoming nuptials. Part of me hoped he'd waken to reason, but I knew him well enough to face the fact that once something grabs hold of him, there's no shaking it off.
I wrote a story about Sam years ago that still defines our relationship. It was printed in a Focus on the Family magazine but is still available here: Keeping the Bond
Basically, Sam has always pushed me out of my comfort zone. Parenting him required constant leaps from my familiar. I recognized the pattern when he innocently asked me to watch the Star Wars movies with him, which meant facing my deepest childhood fear: Darth Vader. Ask my family. I left before the end of The Empire Strikes Back at age ten and hid in the theater bathroom.
But I watched the movies with Sam. And continued to lean his way the best I knew how time and again. But marriage his sophomore year in College? Are you kidding? He doesn't even keep his bedroom clean.
But a series of articles began to appear. I'll link them in case you have interest. But in time, I couldn't deny that God seemed to keep easing my panic and reminding me His plan for my youngest has always been a little different.
World Magazine: The Great Man Hunt
Today's Christianity Blog
The Atlantic
And the more I watched Sam with Courtney, the more my reservations gave way to blessing. He doesn't need my permission. But I appreciated a few months to process it all. In the end, since we both have mitochondrial disease and he's watched me struggle to walk for years now, it was really hard to argue with the statement, "Mom, I want to get married young and have kids young because I don't know if I'll be able to walk when I'm forty."
So here's the photos that cinched it for me. While Courtney was in South America on a study abroad trip, Sam ordered a ring and had the stone set so he could propose the moment she got back. And that's what he did:
She was crying before he even got down on one knee... very happy to be home.
Notice the ring!
And the future begins...
Monday, June 17, 2013
It's Almost Time
I love the ocean. It's where I feel closest to God. So when I arrive on heaven's shores, I think it will look something like this... but the sand won't stick, the sun won't burn, and the breeze will always blow soft and cool.
I think about heaven most after I trudge through the sand with ankle braces on and open my chair at the waters edge. I used to sit there all day long. Two hours is about it now. But while there last week, I gazed at bubbling waves till pain forced me inside. Light reflected through moving water, offering endless beauty.
We made some family memories, especially the night Dad called an evening photo shoot on the beach. The cousins built the infamous pyramid, mimicking a photo taken when they were all shorter than me.
Then they fell.
We got a foursome photo - a rare commodity these days - especially now that my oldest is gone for the rest of the summer.
But before he left, we sang. And they sang. And the older generation watched the younger group perform the four part harmony song only we had known for years. Serendipitous and Surreal. The music lives on.
But it's almost time now. Almost time for Dr. Morrison to open my back and fuse a joint, forcing me to maneuver pain and rest. Sharp pain today assured me it's time. Time to face the surgery. Time to let God be God and use a doctor's hands as His own. The creator of the endless seas is able, so I'll remember the ocean and God's big love and rest on the operating table tomorrow morning as I did at the ocean's edge.
"The whole earth is filled with awe at your wonders; where morning dawns; where evening fades, you call forth songs of joy." (Ps. 65: 8)
Wednesday, June 5, 2013
And the Fusion Is On
But yesterday, when I left the neurosurgeon's office, I
wondered if some of that might change. Two weeks from today I'll be lying on a
hospital bed in more pain than I want to imagine. In fact Dr. Morrison said I
won't like him two weeks from now. But I can't help but wonder if some of the
oddness in my feet will subside after they stabilize the wretched joint.
I fell three and half years ago after telling an orthopedic
surgeon (for over six months) that my right ankle was loose. It was never
unstable enough for him in the office. But an encounter with a pine cone at the
bottom of my front brick stoop proved him wrong. By the time he opened me up,
he had to search for the detached ligament.
When I couldn't stand due to sciatic pain about five weeks
later, I was admitted to the hospital after my second trip to the ER. Don drove
me home after my first attempt to get help but the pain stopped me cold on our
icy walk way as I tried to get to the house. I crawled up our front steps but
then couldn't stand up. As I wailed in pain on our front porch in 22 degree
weather, I finally told my husband he had to call an ambulance.
The ER took me seriously when I arrived the second time and I was admitted.
The doc who did the ankle surgery read the MRI the next day
and told me I had one of the ten herniated disks he'd ever seen—which is
probably why my right leg hasn't been normal since. Days after surgery I couldn't roll over in bed
without lifting my knee with my hands. And even months later, if I lay
on my left side, I couldn't lift my right leg. Steroids shots helped some. But
the leg has been weak ever since.
So I can't help but wonder if the right surgeon, fusing the
unstable joint, will offer some relief. He made it clear there's no guarantee.
So if you think of me, will you pray that the great physician will guide Dr.
Morrison's hands in two weeks and that if there is a nerve to be let loose,
that God will divinely guide Him to the right place.
I'll close with a song I wrote years ago. Mac Powell composed the
radio, popular version of these words. But ironically, I wrote this about the
same time he wrote his. And a group of kids performed my take on an Easter
Sunday, not long before he shared his song in the same service.
Wednesday, May 29, 2013
What Living Could Be Like
I wasn't planning this, but I became the admin of a faith based mitochondrial disease FB group about two weeks ago. So I compose thoughts while drinking coffee, hoping to encourage myself and maybe others. The challenge stirs thoughts I might otherwise ignore. The words come from a different place so for now, I'll divert from my typical blog posts and share some of them here.
And if you're interested in joining the group, you can find it here: Walking by Faith with Mitochondrial Disease.
May 24th:
Today I'm enjoying day old coffee because it was easy to fix. I'm
sitting on our wrap around porch (with leftover pollen) while a cool breeze
blows. After a frenzied three weeks, there is calm. And I'm soaking in the
moment when all feels right with the world.
In contrast, I cried real tears twice this week. Once due to
fear when severe instability and pain altered my gait and the other when an old
relational wound resurfaced. Waves of anxiety washed over me and I wept. And knew I needed rest.
The day my ankle popped last week, I spent the morning
thinking about what it would be like if I could live with more faith than fear.
Peaceful mornings remind me everything's OK. He's got it under control. But
then the ankle pops and anxiety builds and I struggle to keep overwhelm from
gripping my soul.
Which is why we need community, why I value a place to
write, and why I’m thankful for a pastor who called and prayed for me the day I
couldn't quite get my spiritual breath.
Still I wonder, as I dwell in His presence today, what
living would be like if I could train my heart to bank on the fact the trees are
just bushes to God; my mountains mere molehills from His vantage point; and my
limitations simply an opportunity for Him to show His power.
Saturday, May 18, 2013
Rising Above Disease Sharing the Music in Me
Years ago a famed author told me, "Those who can do and those who can't teach." I've wrestled with my profession ever since, feeling that teaching voice and piano is less respectable than finishing a book or singing through out the globe. I still hope to publish my words and sing more than I do now, but for the past ten years, teaching private lessons has done more than just pay the bills, it's kept me going.
I saw it more clearly this spring - after the ankle reconstruction. Time with students distracted me from pain and made me feel useful even on the slowest of days. And then, in late April, I got an invitation to an event at Pebblebrook High School, a well respected school of performing arts close to home. One of my students, a senior at the school, graduated in the top 5% of her class. The top students were asked to write a speech, thanking two teachers who have impacted their lives over the years. And Meredith chose me.
Not only did I get to listen as she read kind words about our time together...
But I even came home with a certificate!
Thanks, Meredith, for a sweet time, indeed.
I was out late that evening and again two days later when Don and I met with a friend in need. So by the time I drove to Athens with Sam on Mother's Day weekend to pick up Nathan from school, my legs were wearing down. Heavy, wobbly steps carried me through his dorm as we packed his stuff and loaded it in the car. We crashed in a hotel room a few hours later so Nathan could finish church commitments before leaving for the summer.
Sam claims Nathan and I snore in harmony.
Sam, Me, and Nathan (who is working towards a degree in choral music education at UGA) |
Nathan not only had to play hand bells Sunday morning, he agreed to sing at an evening event as well. But as a Mother's Day gift to me, the three of us ended up singing an arrangement we rehearsed that afternoon of It Is Well with My Soul at the concert that night. I don't know when we'll sing together again. So I relished this moment with my young men who wouldn't even sing in front of me years ago.
Proof from far away...
And up close.
I held onto walls and worked hard for balance as we left the church, but my heart was bursting with all kinds of cool mom feelings.
Monday proved a day of survival. But by mid week I thought I was getting back to my odd normal. When I took a step after teaching three hours on Wednesday, however, something popped in my right ankle. I'm still waiting for the results of a stat MRI. But last night some of my students who can't attend our end of the year recital gathered at our store to sing. The ankle was tired. Every step took effort. But my students did such a good job I had a hard time going to sleep.
I may need another surgery; may be hobbling for months. But these recent music memories lift me above the disease and make me thankful for the days I've spent in a small practice room, helping others connect to the music in their own souls.
For now, that's more than enough.
Thursday, May 2, 2013
A View from Lookout Mountain
This is me on a mountain - far from my normal routine. A mito mom friend, Amy, invited me to leave town and this was the view outside our room on Lookout Mountain two weekends ago. The sky was ocean blue; the temperature crisp, but not cold; and the conversation nonstop. So we paid the entrance fee to Rock City - which was radical living for me.
My knee scooter and I couldn't navigate fat mans squeeze or the rope swing. In fact, it didn't take long for me to make sure I was on the handicap path, avoiding slopes and stairs. The walk wasn't too long so one scoot at a time I made it to a vantage point well worth the effort.
Amy and I sat in rockers till closing time, chatting while gazing over the mountains edge. When I barely had enough time to scoot back to the entrance, I got crazy and climbed three stairs so she could photograph me on this bridge.
Then we traded places.
As we prepared to leave, an tourist photographed us together. And this is my favorite photo because time with Amy changed me. Iron sharpened iron so when I came down the mountain, life was better than before.
I'm still amazed how sharing one another's burdens lightens your own; how time with a kindred spirit eases the journey and offers perspective lost in day to day drudgery. Time on the mountain reminded me that He is big and our problems very small, for, "He sits enthroned above the circle of the earth, and its people are like grasshoppers. He stretches out the heaven's like a canopy and spreads them out like a tent to live in." (Is. 40: 22) For "He has established His throne in heaven and His kingdom rules over all!!" (Ps. 103: 19)
We live under God's big tent sky and are such a blip in the realm of eternity that when I grasp that for more than twenty-three minutes, my worries dissolve into "light and momentary troubles (that) are achieving for us an eternal glory that far outweighs them all." (2 Cor. 4:17)
It's not that my problems aren't real. It's just that Creator of the Universe is so much bigger.
It took two weeks for my mitochondria to catch up after our weekend away. I napped more than normal and lived the bare necessities. But my heart has been full to overflowing, for "I am confident of this; I will see the goodness of the Lord in the land of the living." (Ps. 27: 13)
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