Words Escape Me

Why is it when I've finally found the time (not really............it's late) and the opportunity to write...........the words that having been churning all day in my head..........just disappear?

The one thought that does keep coming to my mind was the odd feeling of sitting in a room with so many people last weekend..........and yet feeling disconnected at the same time.  I know from where is comes.  But, it's an odd feeling nevertheless.  So many people there had, by there presence, donated towards research for CF.  Yet, they didn't have a clue.  That's okay.  Either did I, before.  Nothing wrong with that.  But, there was such an odd feeling within me.  The idea that you can know a thing..........without really knowing it.  I sat there........watching all these young people and knowing they were reading the words of information displayed on the screens......but they didn't really understand how life altering CF is from morning to night....day in....day out.  They sat and stood singing the words to every song.  They had come for the performance........and I'm glad.  It's what raised the money.  But, we were there only because the event was for CF.  They all wanted their picture taken with their favorite musician......I just wanted to put a picture of our sweet boy in the hands of the musician......to put a face with the cause.  And, I did.  And he was oh so gracious.  Connection made. Thank you Rhett.

It wasn't too long ago that I was that young woman at the concert anticipating the all the future would hold.  And just like that......I'm forty-three.  Age makes you think.  It gives you some introspection.  Can't imagine what it's like to be sixty or eighty.  The thoughts that must go through one's head then.

There are some days that the depth of this world and all that is inherent in being human upon it are so inexpressible.  God has created such an amazingly complex and beautiful creature in man.  I look at our children with wonder each day as their quirks and personalities unfold.

I truly can't find the words tonight.........

Off Kilter

Monday was a long day.  It was clinic day for us.  There were things that were different and unexpected and these threw me off kilter a bit.  I didn't realize how much until we arrived home and I hit the bed.  Finally done with a long day filled with both joys and stresses I relaxed and the emotions came freely.

There are so many things about CF that are extremely difficult.  Finding balance in life with CF for our son, as his mom, is so difficult.  I want the most normal life possible for him without taking stupid and unnecessary risks.  Risks for those with Cystic Fibrosis are all about bacteria!  Someone at our clinic said it's like walking a balance beam between total paranoia and too much risk.  In between is the fine line that is normal for our son.  We've just got to find it.  We, as his parents, have to define and decide exactly where the balance beam lies.

Progressive..........it's a thing that can allow me some denial..............some.  Until I see an x-ray and there's a bit of white fuzziness that wasn't there before.  Nothing overwhelming.  Just a confirmation of the junk I've heard rattling around in there.  Progressive.............undetermined progressiveness.  Speed unknown.

Will I ever get accustomed to this?  Like, I want to?  The only thing about CF that is certain is that it is progressive.  How I loathe that word............on many levels.

My mind knows that the things we consider certain many times are not.  There is only one certainty and that is Christ.  God is sovereignly in control.  He assures me that in this world I will have trouble.  He encourages me to take heart because He has overcome the world.  I know, from His Word, that our life is like a vapor.  I know that all things work together for good (his definition of good) for those that love Him.  And, I know His mercies are new every morning and His grace is sufficient for me.  Oh Jesus, thank you for your Word in my heart.  That I can lean on You and Your promises to me.  My goodness Lord, I thank you for all my life holds that makes me trust and depend more deeply, thoroughly on you, in a way I wouldn't otherwise.  In that way, I thank you for CF.  

But, oh Jesus.  I hold that sweet boy and wonder how long I can.  I breathe him in every day.  I think ahead to his suffering.  Then I remember Matthew 6.  Who by worrying can add a single day to his life?  Jesus knows my days and our son's.

God is merciful that we don't know the future.  But, with CF, we know in part.  Imagine being told five, ten, fifteen, maybe even fifty years before it occurs, that you will have cancer and it will be fatal.  But, you don't know if it's five, ten, fifteen, or fifty years ahead.  You only know that the cancer has begun to grow and is progressive in its growth.  You don't know how many years it will be before you see and feel the affects.  You don't know how long your active battle will be.  You only know you will most definitely see the affects and you will see battle.  Who wants to know that?  Then imagine you're told that you can keep yourself healthier for longer, keep your cancer from progressing as fast, if you avoid something as common as water or air......bacteria!  But, now here's the kicker.  It's not YOU who will have cancer............but your baby boy.  Your sweet, dear, precious boy.

Oh, it's a balance all right.  And last Monday I fell off the beam.  I think it may have shifted under my feet.

I'm So Far Behind I Thought I Was First

I have a sign that hangs in our home that says "I'm So Far Behind I Thought I Was First"!  It describes these past several weeks.  I have been so busy.  So many things that must get done and then the things that I simply WANT to get done..........not making much progress on those.

A simple thing like switching out spring/summer clothes for fall/winter clothes is a daunting task for a large family.  Whew!  I'm almost there.  I love our hand-me-down closet.  We shop at home FIRST!  Then make a list of things for the oldest of each gender and those things that seem to be missing in the hand-me-downs.  It is time consuming though getting each kiddo switched out.

I still have work to do on our Great Strides Walk.  It was a huge success.  We had the most registered walkers and exceeded our goal by 50%!  Pretty good first year.  Now that I have a sense of what I am doing I look forward to beginning earlier and smarter next year.  But, there are thank yous to send and a video I'm putting together.

Then there is just the day to day around here.  It's busy from the moment I open my eyes.  I play possum most mornings just so there's a bit of quiet in which to pray at the start of a new day!  I need Him each day in every moment and every task.  Just knowing He's there with me all day...........thank you Lord.  He sees me mess up, fail, seek forgiveness, if needed, and start again.  I'm always telling the kids that we all fail, we all sin in some area and fall short of God's standard, but, it's what we do at that point that makes all the difference.  That's where I don't want to disappoint.

It's only at the end of the day, like now, up way too late, that I can have a complete thought!  The soft snoring of my wonderful husband, and the quiet breathing of our youngest little one on the monitor, and crickets chirping outside our bedroom window.................ahhhhh.

Well, there's more, but the bed is calling my name.  Tomorrow we go to church.  Such a good day it will be.

Great Strides

We are gearing up for our first year participating in the CF Foundation's Great Strides Walk.  I am very encouraged and excited about our team.  I think I might need a huge box of hankies for the event.  We set a modest first year goal and just really wanted to put together a great team of friends and family.  We have exceeded our monetary goal and have had such an awesome response to walking with us as well.  It has touched me and reminded me just how blessed we are.

Balance, Responsibility, Denial & Paranoia

Balance is so tricky.  How do you balance caution and smart practical steps, true paranoia and what others perceive as such?  How do you know which is which?  When is it that you have slipped from one to the other?  How do you recognize denial of either?

I must admit irritation at those who condescend to others voicing concerns.  Especially if those concerns were posed by their CF doctors.  I see such a divergence of opinions and approaches between parents of CFers and the adult CFers themselves.  I think it human nature for an adult to be somewhat more cavalier about their own health than that of a parent of a child ~ CF or not.  But, when the adult CFer turns this attitude toward the parent.....well, as a CF parent, I get a bit irritated.

Cystic Fibrosis is all about salt and water processes and ultimately mucus.  But, it's not so much the mucus that kills.  It's the bacteria's use of the mucus as a shelter, home, and breeding ground that kills.  So, wouldn't it follow, that a parent should, where practically applicable, attempt to limit or guard against the very bacteria that is known to take the life of those with Cystic Fibrosis?  To quote our CF pulmonologist,  "It's all about bacteria."  I realize it's everywhere!  But,  do we care if it comes from the air, dirt, mouth, shoes, pooh, toilet, hands, pool, steam room, jacuzzi, sole of our shoes.............?  Just because it has a funny sounding source should we downplay its potential affect?

For those of us with children that have yet to culture positive for pseudomonas why would anyone laugh, chuckle or find it humorous that a parent is attempting to safeguard her child from it?  Especially if the concern was first posed by her child's doctor?  Knowing that once that bacterial infection is introduced lung damage begins and life spans shorten, why would anyone scoff?

Now, I understand the veteran/rookie mentality that applies to just about every situation in life.  There is always someone who has been there and done that!  But, our child hasn't been culturing pseudomonas for even one day much less forty years.  I figure every day our child doesn't have this bacteria is one more day of health for him.  Why wouldn't I want that?

What toddler hasn't put on mama or daddy's shoes and paraded around the house?  My seven year old was wearing daddy's Texas-sized fourteen boots just two days ago and my little CFer wanted to do the same.  Toddlers lick and smell and test things with their fingers and mouths! Not that big of a deal to put those puppies in the closet and keep little hands out of them.   

We don't cut off our hands.  We wash and use hand sanitizer.   Years ago colleagues scoffed at  Dr. Ignaz Semmelweis for insisting that student physicians wash their hands after handling cadavers in anatomy class and before examining the mothers in the maternity ward.  At that time, women in the maternity ward died at a rate five times faster than those who delivered at home.  It would be fifty years before the practice of simple hand washing was seen as beneficial and Dr. Semmelweis's theory was confirmed by Louis Pasteur.

Seems the information on shoes, feet and bacteria is just one more piece of knowledge that might keep my little guy healthy a bit longer.  I am grateful for it.

Ah, this really all leads back to the whole mild and severe CF debate, doesn't it?  Well, I can say that I am uniquely situated smack-dab in between both of these worlds.  My mother, sixty-seven has just recently been diagnosed.  And, so has my three year old son.  My mother cultured nothing!  Praise God.  And my son has yet to culture anything as well.  However, I will not assume that his CF will follow my mother's path. 

I will say, that those with a cavalier attitude towards CF only have the privilege of such an attitude because they are still relatively well. Kinda like the man protesting a war and holding up a sign belittling America's involvement in war.  What a complete disconnect going on there!  The man only has the ability/freedom to hold the sign in protest because America recognized the threat and went to war in the first place!  The argument is based on a false assumption ~ that we can  always attain peace without war and so ultimately war is always unnecessary.  That is false.  Shall we not go to war in the hope that maybe the enemy will treat us okay and things won't turn out as badly as the experts think?  I tell you what, let's just drop all precautionary measures because we don't want anyone scoffing at us and perceiving us as paranoid.  Shall I only begin in battle once my child has cultured positive for the very bacteria that can take his life?  Or maybe, I should be so bold as to initiate in battle before the big guns are aimed at my child's lungs.  You know, by not letting him play with people's shoes?

Well, I'm not going to sit by while others tell me to relax.  I won't.  While I don't plan on us walking through life overly paranoid I will take practical every-day steps to protect the very ability/freedom our son now enjoys.  I won't invite the enemy to come play with my son, even if he shows up wearing our shoes!

His Grace

Top Ten

Today's Top Ten

1. Being awakened by our littlest one tip-toeing into our bedroom and whispering, "Mama".
2. Pizza take out for dinner.
3. A cleaned and organized desk.
4. A disaster averted.
5. Boys watching "Davy Crockett ~ King of the Wild Frontier".
6. A completely quiet house for an hour.
7. Kisses from my husband.
8. Realizing how much I really have taught our children over the years home schooling.
9. Tylenol P.M.
10. God's grace and mercies are new every morning.

To Go or Not To Go

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.......

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.

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.

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?

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.