There's a short trip I can take with my husband coming up. It's partly business for him. I would be free to sleep in, order room service, shop a bit and truly enjoy a fantastic hotel; not to mention spending the evenings with my wonderful husband. I'm a bit skittish at the idea of both of us being gone for three days. I always am when we leave the kids ~ which isn't often. Our son's diagnosis is only about six months old. Leaving five children, CF treatments and meds ~ I'm unsure. Yet, when I attempt to see a bit further down the road, I wonder if now isn't the very time we should get away.......
Thursday, July 29, 2010
Thursday, July 15, 2010
Stepping Out
It's been a difficult week. I have days when I tend to let myself drift toward melancholy. I generally get irritated with this after a bit. I am just too pressed to tolerate it. But, at the same time part of me just needs to let it be for a bit. So.....the tension.
Regarding my sweet and salty one, well, I have begun to hear just the slightest bit of junk in his respiratory track. A clearing of the throat here, a small cough there. Just the slightest. I've noticed he wakes in the mornings a bit congested. For several months I sat squarely on the seat of denial. At first there was devastation. Then, with my mother's diagnosis there was hope. Actually, I suspected my mother's diagnosis way before it was official. I pressed to get it. To be honest, once I had a list of symptoms in front of me, I diagnosed them both. I remained guarded to the possibility of it taking a different route than hers. But, after several CF clinic visits, lots of internet research, and more understanding of the specifics regarding his mutations, I can see that I can't hide behind that false assurance any longer. It's kinda like stepping out from behind your daddy's pant leg. Still gripping tightly to the fabric, leaning way out, to see what's there. Trouble is, you can't see a thing.
Regarding my sweet and salty one, well, I have begun to hear just the slightest bit of junk in his respiratory track. A clearing of the throat here, a small cough there. Just the slightest. I've noticed he wakes in the mornings a bit congested. For several months I sat squarely on the seat of denial. At first there was devastation. Then, with my mother's diagnosis there was hope. Actually, I suspected my mother's diagnosis way before it was official. I pressed to get it. To be honest, once I had a list of symptoms in front of me, I diagnosed them both. I remained guarded to the possibility of it taking a different route than hers. But, after several CF clinic visits, lots of internet research, and more understanding of the specifics regarding his mutations, I can see that I can't hide behind that false assurance any longer. It's kinda like stepping out from behind your daddy's pant leg. Still gripping tightly to the fabric, leaning way out, to see what's there. Trouble is, you can't see a thing.
Wednesday, July 7, 2010
Grace in Reality
I'm here alone on this blog. And that's okay. Someday someone will come upon it. But, for now it's a retreat. It's late and I should be sleeping. But, I so enjoy this time alone in a quiet house. I hear the steady and soft breathing of two loves. One next to me in the bed and the other by way of the monitor on the night table.
Baby monitors. We've had one in the house now for twelve years. I listen for the steady inhale and exhale. And I cherish the quietness of his breathing. I try not to allow my mind to wonder into unknown tomorrows. I am so thankful for what I haven't known these past three years. The tales my mind would have spun had we had his diagnosis from the beginning. The Lord's timing is perfect.
So, I ponder the differences between those who define themselves by a thing and those who are insistent on their person-hood first and then just add the thing to themselves. My gut is that it's a small bit of denial but I'm not settled on that theory just yet. "Hi, I'm Susie-so-and-so. I am fifty-two. I am married with two grown children. I love fried chicken. I only wear sweats. And, oh yeah, I have cancer." This may work for a bit. But, what happens when each day and almost every moment revolves around cancer? My mother had cancer. She was treated and recovered. Case closed. Many years have passed. But, what about those who's stories don't play out that way? Is cancer or CF or autism or downs really just an afterthought to life? I wonder how much this pushing back of a label is an effort to disagree and lodge a complaint against the Creator? Don't get me wrong. I'm not suggesting people lay down and die. I'm not suggesting a defeatist attitude. But, does an honest fight require denial? Might there be beauty in those who embrace all that is uniquely their person-hood? Warts and all? It's like being comfortable in your own shoes.
Yesterday I saw a woman entering the dentist office as I was leaving with our daughter. The slender woman stepped out of her youngish vehicle. Her long hair was sporting some bleach and a clip piling it askew on her head. Her skin had the glow of a tanning booth. Large hoop earrings dangled in the sunshine. Her fingers sported large, clunky costume jewelery. The white , v-necked sundress she wore was anchored by spaghetti straps and fell to mid thigh. Lugging her large, gold and silver lame' handbag she walked briskly towards the door on silver lame', ankle-strapped sandals. This woman was not comfortable in her own shoes. Of course, I am speculating. Her age gave her away. The one thing she so desperately was trying to avoid. She was a least fifty-five. If not sixty. She was running from the reality of her age. And, instead of being graceful and embracing who she was, warts and all...........well, she was in denial. She garnered for herself pity instead of admiration. There was a beautiful spark of a woman hidden under all that stuff. I am suggesting that those who look upon her and think, "Wow, that's how I want to be when I'm sixty!" are women just like herself. Running and hiding women who refuse to embrace who and where they are in life. I'm not suggesting this woman run home and put on a polyester pantsuit. Dignity and beauty can be derived from an honest acknowledgment of the facts.
While I don't propose wallering in CF, I don't plan denying it either. I've just put my little toe into the ocean that is CF. But, I think I would be in a strange under -acknowledgment to say that it's not well onto it's way to defining our family. It changes more than it leaves untouched. Will I lay down and play the victim? Absolutely not. But neither will I parade around on a denial cloud to the pity of those around me. I pray that I will, we will, gracefully embrace all that God has for us. For He is not shocked or dismayed. His Word doesn't speak of denying our trials but turning to Him WHEN they come. Am I embracing the enemy? No, just trusting the King.
Now, off to sleep with the lullaby of each breath in my ears.
Baby monitors. We've had one in the house now for twelve years. I listen for the steady inhale and exhale. And I cherish the quietness of his breathing. I try not to allow my mind to wonder into unknown tomorrows. I am so thankful for what I haven't known these past three years. The tales my mind would have spun had we had his diagnosis from the beginning. The Lord's timing is perfect.
So, I ponder the differences between those who define themselves by a thing and those who are insistent on their person-hood first and then just add the thing to themselves. My gut is that it's a small bit of denial but I'm not settled on that theory just yet. "Hi, I'm Susie-so-and-so. I am fifty-two. I am married with two grown children. I love fried chicken. I only wear sweats. And, oh yeah, I have cancer." This may work for a bit. But, what happens when each day and almost every moment revolves around cancer? My mother had cancer. She was treated and recovered. Case closed. Many years have passed. But, what about those who's stories don't play out that way? Is cancer or CF or autism or downs really just an afterthought to life? I wonder how much this pushing back of a label is an effort to disagree and lodge a complaint against the Creator? Don't get me wrong. I'm not suggesting people lay down and die. I'm not suggesting a defeatist attitude. But, does an honest fight require denial? Might there be beauty in those who embrace all that is uniquely their person-hood? Warts and all? It's like being comfortable in your own shoes.
Yesterday I saw a woman entering the dentist office as I was leaving with our daughter. The slender woman stepped out of her youngish vehicle. Her long hair was sporting some bleach and a clip piling it askew on her head. Her skin had the glow of a tanning booth. Large hoop earrings dangled in the sunshine. Her fingers sported large, clunky costume jewelery. The white , v-necked sundress she wore was anchored by spaghetti straps and fell to mid thigh. Lugging her large, gold and silver lame' handbag she walked briskly towards the door on silver lame', ankle-strapped sandals. This woman was not comfortable in her own shoes. Of course, I am speculating. Her age gave her away. The one thing she so desperately was trying to avoid. She was a least fifty-five. If not sixty. She was running from the reality of her age. And, instead of being graceful and embracing who she was, warts and all...........well, she was in denial. She garnered for herself pity instead of admiration. There was a beautiful spark of a woman hidden under all that stuff. I am suggesting that those who look upon her and think, "Wow, that's how I want to be when I'm sixty!" are women just like herself. Running and hiding women who refuse to embrace who and where they are in life. I'm not suggesting this woman run home and put on a polyester pantsuit. Dignity and beauty can be derived from an honest acknowledgment of the facts.
While I don't propose wallering in CF, I don't plan denying it either. I've just put my little toe into the ocean that is CF. But, I think I would be in a strange under -acknowledgment to say that it's not well onto it's way to defining our family. It changes more than it leaves untouched. Will I lay down and play the victim? Absolutely not. But neither will I parade around on a denial cloud to the pity of those around me. I pray that I will, we will, gracefully embrace all that God has for us. For He is not shocked or dismayed. His Word doesn't speak of denying our trials but turning to Him WHEN they come. Am I embracing the enemy? No, just trusting the King.
Now, off to sleep with the lullaby of each breath in my ears.
Friday, June 25, 2010
Funny isn't it? How I created this blog as a spot to put all these random thoughts down; and yet, even here they seem too random to make sense. Sometimes I can't even compose a paragraph. Just thoughts like.....
Life is messy.
How this fallen world has two threads ~ joy and suffering. They are so intermingled with one another. One is always a thread in the other. I was reading a critique of a favorite book of mine today. The critic was stating how this particular author was masterfully able to run these two threads together in his story. He talked about how this is part of the reason the book is so beloved. I agree. It mimics life.
Or thoughts about......
Advice that came from another CF mom to not sweat the small stuff and remember that those you encounter, seemingly going about a routine day, could be suffering in ways you can't imagine.
And, did I mention, don't sweat the small stuff?
Life is messy.
How this fallen world has two threads ~ joy and suffering. They are so intermingled with one another. One is always a thread in the other. I was reading a critique of a favorite book of mine today. The critic was stating how this particular author was masterfully able to run these two threads together in his story. He talked about how this is part of the reason the book is so beloved. I agree. It mimics life.
Or thoughts about......
Advice that came from another CF mom to not sweat the small stuff and remember that those you encounter, seemingly going about a routine day, could be suffering in ways you can't imagine.
And, did I mention, don't sweat the small stuff?
Sunday, June 20, 2010
I've been drafted. Drafted into a war I barely knew existed.
I remember long ago hearing of a girl in my elementary school who had lung problems. I knew she had a disease and she missed a lot of school. I perceived sadness around her.
In adulthood I kissed our kiddos gauging their saltiness. I couldn't recall why this was important. I just knew it wasn't desirable and if they were to come up saltier than expected I'd bring that up to their doctor.
I would watch the local television commercials for home health care providers. Smiling toddlers wearing a contraption that shook them. I knew this had somehow replaced the claps to the back.
This information was distant and not anchored in my mind to anything. Just that stuff we somehow know and have absorbed over time.
And then, I was drafted into this war. And all those tidbits of information, disease, sadness, saltiness, toddlers wearing contraptions; well, all of those were now anchored, permanently to our youngest child.
The disease is called Cystic Fibrosis and I have been drafted into its war.
Like a young recruit I am not yet weary, angry or cynical from battle. Yet, I know those who have been drafted long before me can be. I can read about their loss and their anger on the net. And, I wonder, how long it will be before I sound like that? How long will it be until I call CF the enemy and curse it? Will I see it ravage our three year old like others I have read about? Or will CF live a quiet life like it has in my mother of sixty something years? What course will CF decide to take in our lives? Will it touch our other children as well?
Will I think things unthinkable about our God in anger and sorrow yet to come? Or will He give me His peace and increase my faith each step of the way so that I may bring glory to Him through this? Or, will I do both of these?
I sat with our sweet boy this week on the couch as his vest shook us both. We sat alone watching "Little Bill". Just the two of us in what is a very busy household. And that sadness I perceived in that little girl long ago settled on me. This is the way it was in the beginning with us. Just he and I, trusting the Lord, struggling to bring him into this world after weeks and weeks of bed rest. And, here we were again. Just us. There is something about a mama's heart for her children. A fierceness of love and devotion only the Lord can top. I know I will walk in this with him in a way others won't because I am his mother. And then, I know there may be the day when I won't be able to walk with him.
But, in that moment, I looked at him and smiled. I reached for that sweet head and planted a kiss there on his temple. So sweet and so salty. My dear boy and his sweet and salty kisses.
I have been drafted into the uncertainty that is CF.
I remember long ago hearing of a girl in my elementary school who had lung problems. I knew she had a disease and she missed a lot of school. I perceived sadness around her.
In adulthood I kissed our kiddos gauging their saltiness. I couldn't recall why this was important. I just knew it wasn't desirable and if they were to come up saltier than expected I'd bring that up to their doctor.
I would watch the local television commercials for home health care providers. Smiling toddlers wearing a contraption that shook them. I knew this had somehow replaced the claps to the back.
This information was distant and not anchored in my mind to anything. Just that stuff we somehow know and have absorbed over time.
And then, I was drafted into this war. And all those tidbits of information, disease, sadness, saltiness, toddlers wearing contraptions; well, all of those were now anchored, permanently to our youngest child.
The disease is called Cystic Fibrosis and I have been drafted into its war.
Like a young recruit I am not yet weary, angry or cynical from battle. Yet, I know those who have been drafted long before me can be. I can read about their loss and their anger on the net. And, I wonder, how long it will be before I sound like that? How long will it be until I call CF the enemy and curse it? Will I see it ravage our three year old like others I have read about? Or will CF live a quiet life like it has in my mother of sixty something years? What course will CF decide to take in our lives? Will it touch our other children as well?
Will I think things unthinkable about our God in anger and sorrow yet to come? Or will He give me His peace and increase my faith each step of the way so that I may bring glory to Him through this? Or, will I do both of these?
I sat with our sweet boy this week on the couch as his vest shook us both. We sat alone watching "Little Bill". Just the two of us in what is a very busy household. And that sadness I perceived in that little girl long ago settled on me. This is the way it was in the beginning with us. Just he and I, trusting the Lord, struggling to bring him into this world after weeks and weeks of bed rest. And, here we were again. Just us. There is something about a mama's heart for her children. A fierceness of love and devotion only the Lord can top. I know I will walk in this with him in a way others won't because I am his mother. And then, I know there may be the day when I won't be able to walk with him.
But, in that moment, I looked at him and smiled. I reached for that sweet head and planted a kiss there on his temple. So sweet and so salty. My dear boy and his sweet and salty kisses.
I have been drafted into the uncertainty that is CF.
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