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?