What CF Looks Like

This is what CF looks like on paper.  And this is what CF looks like in real life:

So this was a long time ago, but part of CF care requires IVs in the hospital.  See?  We're OK; we're smiling and pretty cute!

Hiking 26 mile Crow Pass last summer.  Hand-held flutter is in his backpack somewhere so that he can keep his lungs clear.

Dipnetting for Copper River red salmon just last weekend.  Some sort of machine that plugs into the cigarette lighter enables him to hop in and run his nebulizer for the month-on of TOBI.

Last year's Great Strides walk: lots of teens, smiles, friends.  It was great!

The fam' hanging out together at the hospital.  If Clare and Ian don't argue on the way into town, they get to watch a movie on Rees' cool bed.  They must have been good this day!

Oh my goodness, that's my kid all graduated from high school (with an IV in his arm)!

Now that he's big, they can place these very long PICC lines (Peripherally Inserted Central Catheter) and we can hook up the meds at home.  Great science stuff for siblings!

You mean teens with CF can dress up and head out to a prom with dear friends?  Why, yes!

So how come this real life stuff is not in those articles that parents turn to in a panic after their amnio or CVS?  

CF parent message boards and chat rooms are filled with people who do great evil, desiring only healthy children (There is, of course, no assurance after birth, for the world is formidably unfair); who mutilate their own body of its life-giving properties, thinking that never to have loved at all is better than to love and lose; who pay astronomical sums for a doctor to pick through their tiny offspring and discard some to death, behaving like children picking through trail mix just for the M&Ms.

Now for perspective, here is asthma on paper and here is ADHD on paper.  Uh oh.  Looks awful, all written out like that.  Surely, if it could be discovered by some prenatal test, the parent should kill the child to prevent such suffering.  However do we draw the line? 

We don't.  All human life is luminous, shining in its own wild and wonderful way.  Anakin Skywalker said it; Karma/Buddhist types believe it; even the Quran condemns killing sick children.  I add these examples for those who think they are intellectually beyond the Judeo-Christian worldview and who might pooh-pooh me, arguing that they're not Christian and don't adhere to Ultimate Truth.  But here's the point of this post ~ Don't Kill Sick People.  Or maybe, Things Look Worse on Paper.  Sure, CF bodies work differently in the salt/water/mucus department, and sure, sometimes IVs are needed, but it's totally livable.  And when it's time to Go, then it's time to go.  True for everyone.

Let us live with dignity so that we may die with dignity.

And for bit of gratuitous cuteness, here's Addie playing.  I'd just taken care of her CF chores: lung therapy, enzymes, salt; and fed her.

      A friend who recently visited, held her for a long time and told me that her own mother would have aborted sweet Addie.  We wept together.

The above articles communicate some (very important) truth, of course, but not all of it!

Let us love with everything we've got, and thank God for enzymes and flutters and IVs and Really Smart Doctors ~

Love,

Allison


P.S. ~ If a baby has something that is not "totally livable", there is dignity and beauty and life and love, even in death.  See Now I Lay Me Down to Sleep and Be Not Afraid.