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:

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)

 

More about Me and this Fatigue Causin' Disease

Once again, I missed the moment. Mitochondrial Disease Awareness Week officially passed with few entries from this blog. Why? Because my right ankle ceased working about ten days ago and my week filled with doc appointments and such.  In two or three weeks I'll undergo my third surgery of the year.

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)

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:

Katie's Tape Kreations

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.

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.

 (Nathan, Sam and the cousin groomsmen.)

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.