While I watched numerous Hallmark holiday specials this month, the Christmas oriented show I remember most was the Dec. 13th episode of NCIS, titled "Newborn King".
I'm not joking. I found it when I browsed our "on demand" listings two days after it aired.
[I also found this Star Wars nativity photo while browsing flickr, copyright Larry Lars. It captures wonder with stars and war so well].
No one was home and I was busy preparing dinner as the show progressed. But I left the kitchen and stood fixated in front of our TV when the bad guys got close and the end drew near. I even wiped a few tears before the episode concluded.
Yes... you can make fun of me now.
I'll skip a full synopsis and just explain what touched me. But you should stop reading here if you haven't seen the show and don't want to know the end - because it all came to a head in adjoining rooms of a run down gas station garage.
A blizzard raged. A simple rendition of "Silent Night" played in the background. Gibbs aided in the birth of a baby wanted by the government while Ziva fought Russian hit men in a fierce gunfight.
Wonder and war manifested right next to each other on a silent, holy night. And the picture presented the most accurate representation of the Christmas story I'd seen all month.
Don't get me wrong, I wish the story stopped at the end of Matthew chapter two and just skipped chapter three altogether. I would rather the Magi left Bethlehem and we never learn that "Herod gave orders to kill all the boys two years old and under in accordance with the time he had learned from the Magi." (Matt. 3: 16) A Hallmark version without unbearable grief is far more palpable.
But life continues with wonder and war - even at Christmas - even during this Christmas.
Maybe it's because I'm still trying to decide if I should buy a mini-van or a mini-SUV so it can hold a scooter for me to ride on, accepting my legs aren't getting any better. Maybe it's because I had a shot in my back a week ago that scared me for two days when my leg cramped through two nights. Maybe it's because little Noah, a five year old boy who's fought mito all his life, almost didn't make it through the holiday (see: prayingfornoah.com) or because my friend Ann and her family have come through a tiresome journey as her husband recovers from a lung transplant.
The list goes on. But deep down, holding to wonder felt harder than normal this year; the reality of the war all too real for me and many others.
Which is why it moved me all the more that Silent Night played through it all. Indeed, "all is calm, all is bright" rings true even on the darkest of nights when the fight is real and the heart ache true.
Jesus didn't come to complete the nativity scenes we enjoy. He came to die on a cross to bring ultimate life for us all. Life for me. Life for Noah. Life for all who suffer, struggle, and give it up to the one true God whose plan of Salvation only began in a manger in Bethlehem.
"For he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed." (Is. 53: 5)
Wonder. War. Jesus born. Oh come... let us adore.
Thursday, December 29, 2011
Tuesday, December 20, 2011
A Tale of Two Nativites
Twenty years ago, this nativity set adorned a hand me down, beat up coffee table in a tiny upstairs apartment. My first husband's dad made the tall ceramic figures for our first Christmas back in 1990. My camera captured only half the figures that sit on my piano today.
It's still my favorite decoration to unpack.
After Don (husband number two) and I moved into his former home, we decided to go through his Christmas stash and combine them both. Days before the search, he inferred a nice nativity set lay buried in the boxes piled high in our basement. I smirked, knowing there was no way his set could trump mine.
It doesn't. But it's every bit as special.
When we found the box, I opened more than another nativity set. I found myself staring at a post card from God: a ceramic set just like my own.
Don's first wife's mother made the set for them about the same time my first husband's dad made ours. It sits opposite mine on a wooden chest in our living room today. Their set has a matte finish, two fewer camels, a very cool angel, and several more chips than ours.
Perhaps I should have let my boys touch our glossy finished set more! Our three giant camels and removable baby Jesus tell the story well.
Regardless, as the holidays approached last year and coordinating kids and families churned an all too familiar stress, finding our matching nativities symbolized a deep togetherness - even if it lay hidden in a box for the first four years of our marriage.
It's still complicated. Blending families, traditions, and schedules creates hurdles we can't always cross. But every evening the last few weeks, I've relished the two sets lit on either side of my small living room.
A piece of him. A touch of her. Together here in our home.
"Joy to the world the Lord has come."
Wednesday, December 7, 2011
Awakening Wonder
A woman from the care team at church called over a month ago and asked how they might help me with life. I struggled to answer but then blurted, "Do you think someone would help me decorate for Christmas?"
A week or two later she sent me an email. Three girls from my October Bible study group (Erin, Sarah, and Bethany pictured above) offered their time. They came over Wednesday night a week ago and started the unveiling.
They put my tree together and filled it with twenty years worth of ornaments. They hung ornate angels on my curtain rods, wrapped plastic, aging garland around my railing, and covered most surfaces in my living room with Santas, snowmen, and nativity sets.
It was a huge step forward.
Boxes still covered the floor, however, when I left for Athens the next day to hear Nathan sing in the annual UGA Hodgson School of Music Christmas Concert. My sister came to help with the driving and after a slow start in rush hour traffic, we were seated in the handicap section where my leg could stretch out with ease.
My tears began soon after the music started. The familiar songs performed with a full orchestra and 150-200 voices, carried me above the ordinary to the place where wonder awakens and hushed holiness prevails.
Between decorating with my memory filled Christmas stash and listening to the familiar story sung with musical excellence, I realized why I love this frenzied time of year. It beckons us to awaken wonder; to revel in the mystery of the divine.
"The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned." (Is. 9:2) "For to us a child is born, to us a son is given, and the government will be upon his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and peace there will be no end."(Is 9:6-7)
During the intermission, a sophomore student leaned over to me and said, "This may seem weird, but I have to ask if you ever worked at Camp Greystone." Sarah had taken some of my Broadway music classes at camp when I served as Music Director there years ago. Surprised by the connection, we enjoyed old memories. She hung around after the concert and met Nathan and some of his friends. I enjoyed visiting with them almost as much as I enjoyed the concert. Pictured here: Nathan, Jenny, Devon, Sarah, and Grace.
As my sister and I drove through Athens on our way home, I checked my messages. Don had called during the concert. Our daughter-in-law, Misty, was in labor. Within the hour, she gave birth to a baby girl, Penny Louise. I ended my evening at Piedmont hospital where I got to see baby Penny, only hours old, whose birth reminded me of the one we celebrate now.
The King of Kings. The Lord of Lords. A tiny baby and creator of the ends of the earth.
It all just awakens wonder in me. And I'm grateful we sing, we decorate, we pause for a season to bask in the miracle of Emmanuel, God with us.
Tuesday, December 6, 2011
Colby Wren on CNN
Colby is a year older than my Sam and has battled mito for several years. Check out his story on CNN:
http://http//thechart.blogs.cnn.com/2011/12/06/human-factor-college-athlete-battles-mitochondrial-disease/#comments
How cool is that?
http://http//thechart.blogs.cnn.com/2011/12/06/human-factor-college-athlete-battles-mitochondrial-disease/#comments
How cool is that?
Tuesday, November 29, 2011
Nails, Turkey, and Church in the Round
Back in June of '10 I posted a picture of my nails. My nasty nails. I've prayed for years that I would stop picking them. And somehow in mid-October, it happened. I stopped. I realized it hurt to pick them and I was tired of hurting myself.
Some days I wonder if it has anything to do with increasing my B-12 intake. My B-12 numbers have always been low and in mid August, I decided to work on them. When they were checked last, they were in the 800's - higher than ever.
Whether God divinely touched me or God and high levels of B-12 calmed my non-stop picking, I'm amazed. I have nails. Ten of them. My cry was heard. After years of bloody cuticles, my nails look healthy and whole.
I still have a list of unanswered prayers - many that seem more important than whether my nails are long or short. But when I look at my white tips, I'm reminded that no matter what's on that list, my God will take care of it in His time, in His way.
As the holidays approached and Don and I haggled over how to manage our blended families, I got this crazy idea to host the meals at our home. I'd never hosted a Thanksgiving meal, turkey and all, just like I'd never grown long nails.
We worked together all day Wednesday so we could serve both a breakfast and a mid afternoon lunch on Thursday. I was tired, as in spastic leg tired. But we did it.
We gave thanks with Catherine and Hazel and their families at breakfast...
And with another round of family at lunch...
I rested in my PJ's all day Saturday so I could sing with our worship team on Sunday. Our church, Sanctuary, worships around a stage that represents the throne of God. Having not sung on a worship team in over seven years (until two weeks ago!), it feels like I'm living another first when I stand to sing.
Nails, turkey, and worship in the round all reminded me that He has His ways. He has His timing. And as we trust and walk with faith, transformation comes. Sometimes with a loud clang, but most often with a gentle whisper... and broken nails grow.
Tuesday, November 8, 2011
Sammy's Small World Homecoming Date
Monday through Thursday, I teach voice and piano for two to three hours. To represent this part of my life, I've decided to share a small world story in honor of Lili, a second grader, who insisted on singing It's a Small World for our recital this weekend.
My son, Sammy received a last minute invite to a homecoming dance a few weeks ago. I didn't know his date, Annie, so I looked forward to meeting her and her family.
After our initial greeting in the foyer of their home, we headed towards the back porch for pictures. As we walked past the roar of college football on TV, my husband, Don, asked, "Who's playing?"
Annie's dad, Skip, replied, "Navy vs. Notre Dame," and then continued with something like, "I'm a Naval Academy alum and a big fan."
I turned towards him and froze in my steps, "Which class?"
His answer made me smile, "65'"
Knowing my dad is also a class of 65' Naval Academy grad, I told him with total confidence, "You know my dad, Bob Snelling."
Skip seemed as surprised as I was at the connection. For not only does he know my dad, he knows him well. My dad delivered a singing Valentine to his wife just last February –with his barbershop quartet—in the very room we were standing in. He had also just sent a donation to my dad’s campaign since he’s running for state office again—something I haven’t talked about much.
But what got me most about the small world connection was that I learned the man in front of me; this guy called, Skip; the father of my son's date had been behind one of the most out of the box memories I have of my dad. Here's the photo:
I wasn’t there. No one from our family was. But while mom was singing with the Atlanta Symphony Chorus at Carnegie Hall, dad was rockin’ it out with Skip’s band in Annapolis at their 45th Naval Academy reunion. Dad even rewrote the lyrics to an old blues tune and pulled out the best costume apparel he could find. If only we had a recording. Still, the picture speaks volumes.
My dad is ever evolving in this small world that still surprises.
I enjoyed Sammy's small world homecoming date. Moments like that comfort me. They remind me that big, sometimes seemingly messy things, are intertwining into small moments that have a bigger purpose. So here's one more close up look at my dad at his finest. And kudo's to Skip for getting him out of his box.
Saturday, October 29, 2011
Thursday Mornings and the Cereus Flower
Rather than begin another blog by chiding myself for not writing, I decided to share some of what keeps me from expression. Today, I'm thinking about Thursdays.
For over a year now, most Thursday mornings, I've met with three senior aged women for a voice/choir music lesson. Sue, Judy, and Nana (my first husband's mom) sing in their church choir and needed some vocal reassurance. So they called me.
When we started meeting, I think I needed them more than they needed me. They valued me and truth is, at that point in time, I really needed to feel valued. But beyond the fact they built me up while I encouraged them, I came to value how we intersected so well right in the messy places in each other's lives.
Only a true friend can handle the messy places.
All four of us have successes intertwined with places of deep pain. Watching them walk out their difficulties with faith has offered perspective and calm. Even at their age they hurt for their kids, struggle with relationships, and cling to the cross for help when there are just no answers.
And so I love my Thursday morning foray into a Catholic choir room with women who keep walking out their faith in God.
Three weeks ago, Nancy, an 82 yr. old alto, joined us. She came for two weeks and then shared she would be gone the next week. What she didn’t say was that her son was dying of ALS. The others knew, of course, but Nancy just smiled and went on with her day as usual.
When we gathered the next week for our lesson, without Nancy, Sue told us about a call she’d gotten days before. Nancy had phoned after dark on a cool, rainy night, insisting Sue walk down to see her cereus flower in bloom. Since they live on the same street, Sue obliged.
She put on a jacket, grabbed an umbrella, and hurried through the dark rain to see the flower that blooms—at night—only once a year. They huddled around the delicate, fragrant flower in honor of Nancy’s ailing son and quietly celebrated his fading life.
He died last Sunday.
A flower here and gone. A blossom for a night. What a blessing to have friends who walk through the dark to share the messy place—the place of deepest pain and greatest beauty.
Last Thursday, we didn’t sing. We just talked. Nobody had all the answers. Nobody had it all together. But we had each other in that large Catholic choir room and it was good.
For over a year now, most Thursday mornings, I've met with three senior aged women for a voice/choir music lesson. Sue, Judy, and Nana (my first husband's mom) sing in their church choir and needed some vocal reassurance. So they called me.
When we started meeting, I think I needed them more than they needed me. They valued me and truth is, at that point in time, I really needed to feel valued. But beyond the fact they built me up while I encouraged them, I came to value how we intersected so well right in the messy places in each other's lives.
Only a true friend can handle the messy places.
All four of us have successes intertwined with places of deep pain. Watching them walk out their difficulties with faith has offered perspective and calm. Even at their age they hurt for their kids, struggle with relationships, and cling to the cross for help when there are just no answers.
And so I love my Thursday morning foray into a Catholic choir room with women who keep walking out their faith in God.
Three weeks ago, Nancy, an 82 yr. old alto, joined us. She came for two weeks and then shared she would be gone the next week. What she didn’t say was that her son was dying of ALS. The others knew, of course, but Nancy just smiled and went on with her day as usual.
When we gathered the next week for our lesson, without Nancy, Sue told us about a call she’d gotten days before. Nancy had phoned after dark on a cool, rainy night, insisting Sue walk down to see her cereus flower in bloom. Since they live on the same street, Sue obliged.
She put on a jacket, grabbed an umbrella, and hurried through the dark rain to see the flower that blooms—at night—only once a year. They huddled around the delicate, fragrant flower in honor of Nancy’s ailing son and quietly celebrated his fading life.
He died last Sunday.
A flower here and gone. A blossom for a night. What a blessing to have friends who walk through the dark to share the messy place—the place of deepest pain and greatest beauty.
Last Thursday, we didn’t sing. We just talked. Nobody had all the answers. Nobody had it all together. But we had each other in that large Catholic choir room and it was good.
Wednesday, September 28, 2011
Hope Flies
Last August, I met a writer who encouraged me to stay consistent with my blog. I left the encounter determined. Within a week, however, three creative endeavors unfolded that have distracted me ever since. I've justified my absence with the excuse, "At least I'm staying creative." But I'm not sure it counts.
Bottom line, the juggle remains a challenge.
After much prodding from my niece and nephew last summer, however, I decided to plan a coffee shop gig sometime this fall. Truth: I put off picking a date due to gnawing fear. Resurrecting music I hadn't performed in about five years overwhelmed my mito deprived brain fuses.
But as Labor Day weekend began, three affirmative emails arrived in my inbox letting me know a song I wrote will be used, a story I wrote will be published, and a local paper had decided to highlight mito disease, interviewing me for the article. Since the song was written for the Foundation for Mitochondrial Medicine, they asked if I'd schedule the coffee gig only a few weeks later, during Mitochondrial Awareness Week.
The concert deadline wouldn't have created as much stress if we hadn't already decided to take a trip to Philly the following weekend to see my 90 yr. old grandparents. The trip combined a college tour for Sam so the travel plus leg work required extra recovery time once home. (More on that soon!)
Suffice it to say, it's been a big month
I haven't blogged much, but I've overcome fears; I've walked far enough to end up in tears, yet rested again to take the next step. And that's where I find myself again today. Resting and waiting to take the next step.
I ended the concert Friday night by singing the song I wrote in honor of Hope Flies, a benefit held once a year to raise money to fund a cure for Mitochondrial Disease. And since I'm better when I'm singing and creating, even if my legs get tired in the process, I'll close by adding a recording of the song. It's my favorite right now.
Check out the event. Check out the song. Cause Hope Flies.
H o p e F l i e s C a t c h t h e C u r e
Hope Flies by SusanSchreerDavis
Saturday, September 17, 2011
Music for the Day
Latest tracks by SusanSchreerDavis
I've known for a long time there's a way to sell music from the internet. Today I figured out how to make it happen. Haven't written a good post... but I can share the music.
As evening settles the day, that alone satisfies.
Saturday, September 3, 2011
Yesterday
Yesterday I started the day early at an FCA meeting at Kennesaw Mountain High School.
Then I went back to bed.
I crawled out of bed at 6:30 am because Sam, my senior in high school, leads worship there on Friday mornings and invited me to come. I'm not sure when I'll be invited again so I wasn't about to miss the moment.
If you had asked me a year ago, or even six months ago if I expected to hear my son lead worship in front of over thirty kids this fall, I would have replied, "Huh? Sam? With a guitar?"
Looking back, the first clue came the day we left for Florida in June. After the car was packed and sweat was pouring down Nathan's face, Sam walked out with his guitar and said, "Hey, can you make room for this?" Exasperated, older brother rearranged the trunk so the guitar fit.
He should have mentioned it earlier, but still, Sam wanted the guitar on vacation.
Two days later, he sang his first solo during family worship. And we were all surprised. There are a lot of singers in my family. But Sam always held back. Now two months after my surprise at the beach, I watched as he led worship with a whole new group.
He's in His grip.
There was a time I had to pay attention to a lot of clinical details and ignore doctor's blow offs and fight for a diagnosis. It was not an easy process. Learning to live outside the grip of that intensity is an entirely different process. I followed maternal nudges and held Sam close to get him what he needed medically. And now God is saying, "Let him go. I've got him. See?"
Yesterday was another step in that letting go for me.
And it was good.
Monday, August 22, 2011
Seven teens and the Smurf movie
I smurf these kids. They made my summer. And even Josh, the youngest, says he'll never forget the night Aunt Susan got everyone to wear blue t-shirts at a 10pm showing of the Smurf movie.
[Truth: It was a 9:30 pm showing. But Josh insists on counting it as 10pm.]
Growing up, we traveled during the summer. This Delta pilot's daughter set foot in several European countries and saw her Hawaiian birth place more than once before leaving for college. Flying about was the norm. Sitting still was not. And I loved it.
A lack of finances limited travel when my boys were young. Unreliable legs and fatigue keep me home now. So by summer's end, after months of rest and rehab from a busy spring, I get edgy and dream of adventure. A trip to White Water would satisfy at this point, but I can't climb enough stairs to justify the price.
So as Nathan's departure for college drew close a few weeks ago, I felt crazed by the fact we hadn't made much of a family memory. I about gave up and then God wrote one for me.
Nathan returned from a family reunion he attended with my mom in Pennsylvania (only three days before he left for UGA) with tales of late night UNO and unconventional rules. Audrey, a friend of Sam's whose mom died this summer, expressed interest in joining us to reenact those games. Within 24 hours, my house filled with almost a dozen teens who gathered for White Chili, brownies, and crazy games.
I love a good party. The chatter. The laughter. Life buzzing in my home.
As the day came to an end, we started brain storming for one last outrageous something. We thought about singing in Walmart but my hip hurt too much for me to walk far. So we researched movies and found the Smurf movie offered the best times and locations. Since none of us would ever have opted to see that movie on a night we weren't vying for the outrageous, it worked. We considered buying blue paint to color our faces, but didn't have time. When I mentioned the t-shirt potential, Sam ran upstairs and dug through his t-shirt stash and found seven blue t-shirts, enough for all to wear. That was outrageous enough for me.
We sat in a row, all eight of us dressed in blue, and watched the Smurfs take on Manhattan. And after the blue characters found their way home, my family even let me take a photo.
So I smurf these kids. On this last day of August, I still really smurf these kids.
"Life gives us brief moments with another... but sometimes in those brief moments we get memories that last a lifetime." Author Unknown
[Truth: It was a 9:30 pm showing. But Josh insists on counting it as 10pm.]
Growing up, we traveled during the summer. This Delta pilot's daughter set foot in several European countries and saw her Hawaiian birth place more than once before leaving for college. Flying about was the norm. Sitting still was not. And I loved it.
A lack of finances limited travel when my boys were young. Unreliable legs and fatigue keep me home now. So by summer's end, after months of rest and rehab from a busy spring, I get edgy and dream of adventure. A trip to White Water would satisfy at this point, but I can't climb enough stairs to justify the price.
So as Nathan's departure for college drew close a few weeks ago, I felt crazed by the fact we hadn't made much of a family memory. I about gave up and then God wrote one for me.
Nathan returned from a family reunion he attended with my mom in Pennsylvania (only three days before he left for UGA) with tales of late night UNO and unconventional rules. Audrey, a friend of Sam's whose mom died this summer, expressed interest in joining us to reenact those games. Within 24 hours, my house filled with almost a dozen teens who gathered for White Chili, brownies, and crazy games.
I love a good party. The chatter. The laughter. Life buzzing in my home.
As the day came to an end, we started brain storming for one last outrageous something. We thought about singing in Walmart but my hip hurt too much for me to walk far. So we researched movies and found the Smurf movie offered the best times and locations. Since none of us would ever have opted to see that movie on a night we weren't vying for the outrageous, it worked. We considered buying blue paint to color our faces, but didn't have time. When I mentioned the t-shirt potential, Sam ran upstairs and dug through his t-shirt stash and found seven blue t-shirts, enough for all to wear. That was outrageous enough for me.
We sat in a row, all eight of us dressed in blue, and watched the Smurfs take on Manhattan. And after the blue characters found their way home, my family even let me take a photo.
So I smurf these kids. On this last day of August, I still really smurf these kids.
"Life gives us brief moments with another... but sometimes in those brief moments we get memories that last a lifetime." Author Unknown
Saturday, August 13, 2011
The Day After
We did it. And I feel a deep smile inside.
Sam and I loaded a rental van with Nathan's belongings and drove them to Athens yesterday. Between the three of us, everything made it to his room in his new apartment in almost mint condition.
A few weeks ago, I decided to rent a vehicle for Nathan's move back to school since I began to wonder if a mini SUV type ride would be easier for my bad leg to maneuver. I drove one for a few months last fall and have had more trouble driving since changing back to a compact car. So I decided to take on the move with the different car to test my leg. It proved a worth while experiment.
The nuance of change helped.
I didn't get a mini SUV due to a mix up at the rental place. But sitting tall in the driver's seat of a new Chrysler van proved the same point. The change in position relieved the stress my ankle doesn't manage well. The main point here: change relieved stress.
I often think of change creating stress. But sometimes change diffuses the very pressure we can't seem to let go of ourselves. Or at least that's what I'm thinking today, the day after I moved my oldest son into his first apartment.
He needs to fly, to bust loose, to leave this place called home. Because if he stayed, the pressure would build.
So Sam and I packed it all up, drove to the new place, and even smiled when we were done. And today I'll thank God for change, and growth, and good things to come.
Thursday, August 4, 2011
Figuring Things Out
This is a picture of Nathan and me taken on his 19th birthday after a concert at UGA last spring. He performed his first solo that night and blew all my musical fuses.
I drove him to college for the first time a year ago this weekend - and just took him back again yesterday. It was goodbye again - which has me reminiscing.
When I came home last year, I filled a new prescription and swallowed a medicine that changed my life for about two months. Leucovorin raised the metabolized folic acid levels in my spinal fluid, helping my legs work like well oiled hinges - better than they had in five years.
Sorrow and joy together again.
As I adjusted to Nathan's absence, my body adjusted to the meds. They were still helpful, but they weren't quite full proof. Truth is, damage from my fall in 09' might be the reason I ended up reaching for my cane again last January (and leaning on it to make it through concert day with Nate). Regardless, as the year went by, I went from thinking I could rebuild muscle strength and live with my sickness on the back burner to accepting it impacts every day and almost every decision I make.
Years ago, I wrote to capture God's fingerprint in my day to day single parent life. I often recounted action stories, involving my two young boys. I've struggled to write ever since I remarried five years ago and at times blamed that change for my loss of words.
Somewhere in the last month, however, I figured out that medical drama isn't nearly as much fun to write about as elementary boy antics. And since the last five years have contained a lot of medical drama, it's just been hard to write.
But after meeting the "smell the color nine" moms, I realize there's an underworld of folks battling chronic illness like me. And while I never planned to share my experiences as a widowed, single mom, I never contemplated having an impact as a disabled writer either.
But that's what I am. And if I can stop apologizing for it and just accept it, I might actually write a few things worth reading.
Nathan's in a hotel in Athens for the weekend during band camp prep. When his apartment's ready, I plan to help him move in. I'm home resting, hoping the nerves in my foot calm down so the drive won't be so painful. And I skipped out on a visit to Don's family farm in south GA this weekend because I knew too much car vibration would further irritate said nerves, limiting the little help I can be later this week.
See? Every choice has to be weighed. And when Don and Sam left today, my heart was sad. Car vibrations - too much? It sounds crazy. Yet if you walked on my foot you'd understand.
When I've written about this stuff before, I've felt like a whiner. Today, I write to commiserate with others who live with less than desirable limitations. You're out there. I'm not alone.
While our hearts continue to grieve on some level, I know this is true, "Lord you assigned me my portion and my cup; you have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance." (Ps. 16:5-6)
And so I will write.
I drove him to college for the first time a year ago this weekend - and just took him back again yesterday. It was goodbye again - which has me reminiscing.
When I came home last year, I filled a new prescription and swallowed a medicine that changed my life for about two months. Leucovorin raised the metabolized folic acid levels in my spinal fluid, helping my legs work like well oiled hinges - better than they had in five years.
Sorrow and joy together again.
As I adjusted to Nathan's absence, my body adjusted to the meds. They were still helpful, but they weren't quite full proof. Truth is, damage from my fall in 09' might be the reason I ended up reaching for my cane again last January (and leaning on it to make it through concert day with Nate). Regardless, as the year went by, I went from thinking I could rebuild muscle strength and live with my sickness on the back burner to accepting it impacts every day and almost every decision I make.
Years ago, I wrote to capture God's fingerprint in my day to day single parent life. I often recounted action stories, involving my two young boys. I've struggled to write ever since I remarried five years ago and at times blamed that change for my loss of words.
Somewhere in the last month, however, I figured out that medical drama isn't nearly as much fun to write about as elementary boy antics. And since the last five years have contained a lot of medical drama, it's just been hard to write.
But after meeting the "smell the color nine" moms, I realize there's an underworld of folks battling chronic illness like me. And while I never planned to share my experiences as a widowed, single mom, I never contemplated having an impact as a disabled writer either.
But that's what I am. And if I can stop apologizing for it and just accept it, I might actually write a few things worth reading.
Nathan's in a hotel in Athens for the weekend during band camp prep. When his apartment's ready, I plan to help him move in. I'm home resting, hoping the nerves in my foot calm down so the drive won't be so painful. And I skipped out on a visit to Don's family farm in south GA this weekend because I knew too much car vibration would further irritate said nerves, limiting the little help I can be later this week.
See? Every choice has to be weighed. And when Don and Sam left today, my heart was sad. Car vibrations - too much? It sounds crazy. Yet if you walked on my foot you'd understand.
When I've written about this stuff before, I've felt like a whiner. Today, I write to commiserate with others who live with less than desirable limitations. You're out there. I'm not alone.
While our hearts continue to grieve on some level, I know this is true, "Lord you assigned me my portion and my cup; you have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance." (Ps. 16:5-6)
And so I will write.
Friday, July 29, 2011
The Smell the Color Nine Moms
This is a picture of a mitochondria. We have many of them in the cells of our bodies. Sadly, mine don't work very well. And since I tried to do more than I can last spring, I've spent most of the summer recovering from a "mito crash" I experienced in late May.
I think I'm finally getting somewhere.
In past years, I've counted on a Beth Moore Bible Study or a good hour of worship for spiritual grounding and inspiration. Last week, however, renewed peace filled me at a Mito Social held in a Cobb County Library only minutes from my home.
Having never attended a support group (even after my first husband died), I was surprised at how much the mere presence of other moms facing my similar disease transformed me. Their stories, their tears, their overwhelm, and their desire for hope all mixed into one giant cocktail. And I drank deeply.
A pile of old CD's caught my attention this morning and soon the music of Chris Rice had me dancing. These words have played in my head ever since:
I think I'm finally getting somewhere.
In past years, I've counted on a Beth Moore Bible Study or a good hour of worship for spiritual grounding and inspiration. Last week, however, renewed peace filled me at a Mito Social held in a Cobb County Library only minutes from my home.
Having never attended a support group (even after my first husband died), I was surprised at how much the mere presence of other moms facing my similar disease transformed me. Their stories, their tears, their overwhelm, and their desire for hope all mixed into one giant cocktail. And I drank deeply.
A pile of old CD's caught my attention this morning and soon the music of Chris Rice had me dancing. These words have played in my head ever since:
"I can sniff, I can see
I can count up pretty high but these faculties aren't getting me
Any closer to the sky
But my heart of faith keeps poundin'
So I know I'm doin' fine
But sometimes finding You
Is just like trying to
Smell the color nine."
Finding God of late has indeed felt a little more "like trying to smell the color nine". And if I'm honest, it's probably because trying to understand mito disease is also "like trying to smell the color nine". This elusive illness, that causes full body energy shortages, shows up in different ways in each child, teen, or adult. I know what to watch for; I know what meds to take; but I can't really wrap my head around what's happening deep in the cells of my body any more than I can smell the color nine.
Last Saturday, I sat in a room with moms who've lost children to the disease, with moms who are scared of losing a child to the disease, and with others who are trying to keep a medical crisis at bay, navigating life with normal looking kids who have very abnormal insides.
And I belonged. My 17 yr. old son and I both belonged.
We're not as bad as some. But as one mom pointed out to me today, "You were the only one in the room with a cane, Susan!"
OK. OK. I get it. I belong. We belong. And today I think we should call our club the "Smell the Color Nine Moms".
And maybe now that I understand my life isn't going back to what it was but rather moving forward towards this elusive unknown, I will get back to dancing and singing... and writing yet again. Will that ever really happen? I sure hope so. This adult onset mito patient has some stories to tell.
Thanks Lauri for the social and thanks Shawna for a fun call today. We can do this thing.
I can count up pretty high but these faculties aren't getting me
Any closer to the sky
But my heart of faith keeps poundin'
So I know I'm doin' fine
But sometimes finding You
Is just like trying to
Smell the color nine."
Finding God of late has indeed felt a little more "like trying to smell the color nine". And if I'm honest, it's probably because trying to understand mito disease is also "like trying to smell the color nine". This elusive illness, that causes full body energy shortages, shows up in different ways in each child, teen, or adult. I know what to watch for; I know what meds to take; but I can't really wrap my head around what's happening deep in the cells of my body any more than I can smell the color nine.
Last Saturday, I sat in a room with moms who've lost children to the disease, with moms who are scared of losing a child to the disease, and with others who are trying to keep a medical crisis at bay, navigating life with normal looking kids who have very abnormal insides.
And I belonged. My 17 yr. old son and I both belonged.
We're not as bad as some. But as one mom pointed out to me today, "You were the only one in the room with a cane, Susan!"
OK. OK. I get it. I belong. We belong. And today I think we should call our club the "Smell the Color Nine Moms".
And maybe now that I understand my life isn't going back to what it was but rather moving forward towards this elusive unknown, I will get back to dancing and singing... and writing yet again. Will that ever really happen? I sure hope so. This adult onset mito patient has some stories to tell.
Thanks Lauri for the social and thanks Shawna for a fun call today. We can do this thing.
Sunday, March 6, 2011
The FOLR 1 Gene
Early last month, Michelle Obama spent time in Atlanta promoting her "Let's Move" campaign. As she stood in front of an audience, encouraging exercise and activity, I sat in an office across town, listening as a Dr. Shoffner explained my need for rest. "For every fifteen minutes of housework you do," he said, "you should rest for thirty."
Do the math. It's complicated.
Instead of moving, I sit. Instead of engaging in activity, I watch NCIS, House, and sometimes even Bones. I'm a crazed TV head hoping that months of shortened activity will allow for more movement down the road.
Further testing by Dr. Shoffner found a mutation in my FOLR 1 (or the folate receptor) gene. That gene serves as the carrier molecule that transports metabolized folic acid across my blood brain barrier. Due to the mutation, it's not doing it's job well. So the med that worked wonders in August (by boosting my metabolized folic acid intake) isn't quite as effective in the long haul. Couple that with mitochondrial disease, and I find when I really pay attention to my body, it requires a much slower pace than I like.
I'm the mom who once smuggled Bibles into China. The mom who roller skated, boogy boarded, and rode bikes on vacation. I'm even the mom who once flew to LA with her young boys in the middle of the night and had to sleep in the terminal lobby on baggage boxes (with strangers) while waiting an early morning departure that would get us to Phoenix. And all that to avoid termites back home... another story for another time.
Bottom line, this TV head lady drives me crazy.
I've tried to write about it a few times but have shrunk back instead. It's hard to put words on paper when I don't feel like the me that I am. But if I don't put it out there, if I don't face it in print, I'm afraid I'll never get to the stories that count.
Phillipians 4: 12-13 states, "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want..." (whether living large or sitting still...) "I can do all this through him who gives me strength." (NIV)
I hadn't considered until just now that sitting still requires as much strength as living large and that accepting limits is as challenging as managing endless opportunities. No matter what end of the spectrum we live on, in plenty or in want, living with contentment can only be accomplished when we're plugged into the source of true strength.
Somehow that helps today: plugging into strength will help me rest.
It's not the same as roller skating, but I think I can lean in and let Him be my strength in weakness.
Do the math. It's complicated.
Instead of moving, I sit. Instead of engaging in activity, I watch NCIS, House, and sometimes even Bones. I'm a crazed TV head hoping that months of shortened activity will allow for more movement down the road.
Further testing by Dr. Shoffner found a mutation in my FOLR 1 (or the folate receptor) gene. That gene serves as the carrier molecule that transports metabolized folic acid across my blood brain barrier. Due to the mutation, it's not doing it's job well. So the med that worked wonders in August (by boosting my metabolized folic acid intake) isn't quite as effective in the long haul. Couple that with mitochondrial disease, and I find when I really pay attention to my body, it requires a much slower pace than I like.
I'm the mom who once smuggled Bibles into China. The mom who roller skated, boogy boarded, and rode bikes on vacation. I'm even the mom who once flew to LA with her young boys in the middle of the night and had to sleep in the terminal lobby on baggage boxes (with strangers) while waiting an early morning departure that would get us to Phoenix. And all that to avoid termites back home... another story for another time.
Bottom line, this TV head lady drives me crazy.
I've tried to write about it a few times but have shrunk back instead. It's hard to put words on paper when I don't feel like the me that I am. But if I don't put it out there, if I don't face it in print, I'm afraid I'll never get to the stories that count.
Phillipians 4: 12-13 states, "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want..." (whether living large or sitting still...) "I can do all this through him who gives me strength." (NIV)
I hadn't considered until just now that sitting still requires as much strength as living large and that accepting limits is as challenging as managing endless opportunities. No matter what end of the spectrum we live on, in plenty or in want, living with contentment can only be accomplished when we're plugged into the source of true strength.
Somehow that helps today: plugging into strength will help me rest.
It's not the same as roller skating, but I think I can lean in and let Him be my strength in weakness.
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