Two weeks have passed since I last wrote. I've been waiting, hoping I could move past my current thoughts without putting them into print. It's summer. Time for pools, and boats, and concerts on the lawn. Discussions pertaining to neuromuscular disorders rank low on my list of fun.
But I can't get to fun till I write reality.
After three and half years of odd legs and wobble walking, a test finally brought clarity to years of confusion. A pediatric neurologist listened to my concerns about Sam's shoulder, ankle, and knee pain in early March. He saw the similarity between my son's issues and mine and requested an EMG for both of us. That EMG took place on June 11th and as a result, it's clear that my walking issues are a byproduct of degenerative, shrinking, unhealthy muscles. And I haven't even turned forty like most of my Douglas County High graduate friends.
I waited a week and called the pediatric doc and was finally able to ask a few more questions today. His answers made me feel better about Sam's current challenges. They're real, but mild.
But he was quick to point out I'm a mess. I agreed. It's totally clear. Ask those who know me best. I am a mess.
We sent Sam's lab work to a genetic testing facility this week. Those tests will be complete on July 10th. The tests will verify if we have a certain type of muscular dystrophy. It's a good type to have. No lung or heart issues normally. But weak facial muscles could explain why my eyes are so dried out... as the weakness progresses, eyelids don't stay closed at night. My family can't wait to find out if I sleep with my eyes open. Creepy.
As I packed for the beach, trying to process the information, I realized I felt like I did the day I learned the Easter Bunny, Santa Clause, and the Tooth Fairy weren't real. It was quite a blow. My seven year old self didn't want to face reality way back when and my thirty-nine year old self is fighting it a little even now.
It's just a lot to take in... which is why Don consoled me last week by assuring me that the Easter Bunny is real.
The good news is, the Great Big God of the Universe is very much real. And while I don't understand all this, I know from experience that He is more than capable of carrying us through.
I got a referral to a neuromuscular specialist today and hope we start moving forward now that we have clear answers.
What a blessed journey we're on.
Friday, June 26, 2009
Friday, June 5, 2009
True Confession
After a long day at the store, Don and I sat hand in hand watching dancers twirl on stage. Rich, interpretive ballets stirred the tired depths of my soul as we waited for Nathan to appear in his tap routine. During an applause break, Don leaned towards me and said, "I like being with you."
My response flowed with ease, "I like being with you too... especially when I don't think you're bossing me around."
Don chuckled, "What did you say?"
Surprised by my own words, I repeated, "I like being with you too... especially when I don't think you're bossing me around."
I whispered as the applause abated, "The important thing here is the word think. Cause at times I probably think you're bossing me around when you aren't; while at other times, I think you're bossing me around and you are, even if you don't realize it."
Since Don doesn't think I can read his mind, he doesn't believe I can claim he's bossing me around unless he thinks he's bossing me around, which on his planet he would never do. Female intuition aside, after almost three years of marriage, I'm fairly certain he's not aware of his tendency to keep me from coloring outside his carefully constructed lines, which leads me back to the place where I fear he's "bossing me around."
God surely scripted a divine romantic comedy when he put us together. Mr. Twenty-Five Years Happy Marriage met Ms. Ten-Years Single Mom. His learned dependence embraced my forced independence and we've been trying to figure things out ever since we spoke our vows at the altar.
That moment of brevity brought clarity to the conflict and for a moment it seemed manageable. If I can just remember he's not trying to tell me what to do every time I think he is, perhaps we'll breathe a bit easier as we manage a store and families side by side... yet on different planets.
My wise husband with kind eyes grinned at my honest confession. And I wondered how many times God has shaken his head while his independent children have strutted about, determined to maintain control.
He knows the best plan. He can see the biggest picture. He really wants to help. Even sent His son to die in our place. Yet time and again, we respond, "I like being with you... especially when I think you're not bossing me around."
Oh to let loose the reigns.
"You never saw him, yet you love him. You still don't see him, yet you trust him -- with laughter and singing." (1 Pet. 1:8, The Message)
My response flowed with ease, "I like being with you too... especially when I don't think you're bossing me around."
Don chuckled, "What did you say?"
Surprised by my own words, I repeated, "I like being with you too... especially when I don't think you're bossing me around."
I whispered as the applause abated, "The important thing here is the word think. Cause at times I probably think you're bossing me around when you aren't; while at other times, I think you're bossing me around and you are, even if you don't realize it."
Since Don doesn't think I can read his mind, he doesn't believe I can claim he's bossing me around unless he thinks he's bossing me around, which on his planet he would never do. Female intuition aside, after almost three years of marriage, I'm fairly certain he's not aware of his tendency to keep me from coloring outside his carefully constructed lines, which leads me back to the place where I fear he's "bossing me around."
God surely scripted a divine romantic comedy when he put us together. Mr. Twenty-Five Years Happy Marriage met Ms. Ten-Years Single Mom. His learned dependence embraced my forced independence and we've been trying to figure things out ever since we spoke our vows at the altar.
That moment of brevity brought clarity to the conflict and for a moment it seemed manageable. If I can just remember he's not trying to tell me what to do every time I think he is, perhaps we'll breathe a bit easier as we manage a store and families side by side... yet on different planets.
My wise husband with kind eyes grinned at my honest confession. And I wondered how many times God has shaken his head while his independent children have strutted about, determined to maintain control.
He knows the best plan. He can see the biggest picture. He really wants to help. Even sent His son to die in our place. Yet time and again, we respond, "I like being with you... especially when I think you're not bossing me around."
Oh to let loose the reigns.
"You never saw him, yet you love him. You still don't see him, yet you trust him -- with laughter and singing." (1 Pet. 1:8, The Message)
Monday, June 1, 2009
My New Friends
I just survived one of those gloriously full weekends. My legs aren't up to par and my head hurts, but my mind is a whirl. So before I go back to bed after an early morning dental appointment, I'll write.
Nathan danced in two recitals last week because he participated in two tap classes this year. I tried to limit him to one. Didn't like the fact that his teachers had more pull over my desire for less activity. But when I watched him dance, I understood.
On Thursday, he held a mic and mouthed the first verse and chorus to the country tune, "Be My Baby Tonight" while one tapper started their routine. Before long his feet were moving fast and my mom feelers almost burst my heart wide open. On Friday night, he impersonated Elvis. He was the cool guy in a fifties soda shop, dancing with all the girls.
A few weekends ago, he sat at home with a high fever uploading CD's into Itunes. When I asked him about his day, he told me, "I spent some time listening to Vivaldi and reading Lee Strobel's The Case for a Creator."
When his feet got moving on stage, Mr. Professor met Mr. Performer and I relished the balance.
On Saturday, I found a pair of shoes, grocery shopped, and finished stocking our store with products from another shipment. I was bone tired when we drove home, but about burst in two again when I searched a random place in the car Don drives and found my CD tracks that had gone missing. A local worship pastor had asked me to sing a particular song Sunday morning that I can only perform with background tracks. God gave me what I needed right when I needed it (after a two day search) and I was so thankful.
On Sunday, I played and sang for the Sunday service, grabbed lunch (with the money I earned selling CD's!), and then headed south of Atlanta to hear my nephew play in his level three Suzuki graduation piano recital.
Somewhere in the midst of it all, I shared my latest revelation with my family: Late Saturday night, as I functioned on fumes, I decided that ants are actually my friends. They insist on cleaning my dishes when I'm busy else where. In my former life, I thought they were an indication of my failure as a housewife. Late Saturday, I realized they're my new friends.
Sammy, my rising sophomore, had only one response, "Mom, do you remember last week when we decided that any epiphany moments occurring between the hours of 11 pm and 10 am are considered void? I'm betting you came up with this during those hours. So... it doesn't count."
Hmmm. He has a point. But I sure like embracing those creepy crawly black things as friends rather than predators. In the midst of non stop activity, it just makes life easier.
"God made the wild animals according to their kinds, the live stock according to their kinds, and all the creatures that move along the ground according to their kinds. And God saw that it was good." (Gen 1: 24)
I'm just agreeing with God.
Now... back to bed.
Nathan danced in two recitals last week because he participated in two tap classes this year. I tried to limit him to one. Didn't like the fact that his teachers had more pull over my desire for less activity. But when I watched him dance, I understood.
On Thursday, he held a mic and mouthed the first verse and chorus to the country tune, "Be My Baby Tonight" while one tapper started their routine. Before long his feet were moving fast and my mom feelers almost burst my heart wide open. On Friday night, he impersonated Elvis. He was the cool guy in a fifties soda shop, dancing with all the girls.
A few weekends ago, he sat at home with a high fever uploading CD's into Itunes. When I asked him about his day, he told me, "I spent some time listening to Vivaldi and reading Lee Strobel's The Case for a Creator."
When his feet got moving on stage, Mr. Professor met Mr. Performer and I relished the balance.
On Saturday, I found a pair of shoes, grocery shopped, and finished stocking our store with products from another shipment. I was bone tired when we drove home, but about burst in two again when I searched a random place in the car Don drives and found my CD tracks that had gone missing. A local worship pastor had asked me to sing a particular song Sunday morning that I can only perform with background tracks. God gave me what I needed right when I needed it (after a two day search) and I was so thankful.
On Sunday, I played and sang for the Sunday service, grabbed lunch (with the money I earned selling CD's!), and then headed south of Atlanta to hear my nephew play in his level three Suzuki graduation piano recital.
Somewhere in the midst of it all, I shared my latest revelation with my family: Late Saturday night, as I functioned on fumes, I decided that ants are actually my friends. They insist on cleaning my dishes when I'm busy else where. In my former life, I thought they were an indication of my failure as a housewife. Late Saturday, I realized they're my new friends.
Sammy, my rising sophomore, had only one response, "Mom, do you remember last week when we decided that any epiphany moments occurring between the hours of 11 pm and 10 am are considered void? I'm betting you came up with this during those hours. So... it doesn't count."
Hmmm. He has a point. But I sure like embracing those creepy crawly black things as friends rather than predators. In the midst of non stop activity, it just makes life easier.
"God made the wild animals according to their kinds, the live stock according to their kinds, and all the creatures that move along the ground according to their kinds. And God saw that it was good." (Gen 1: 24)
I'm just agreeing with God.
Now... back to bed.
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