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!
