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.