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.

Country Music Anniversary

                                                     * 22 years ago, June 9, 1990*

 They don't allow 15 year olds to marry anymore . . .  naw; we were 20 and 22!  But we forgot to have someone take our photograph last evening, all gussied up for a nice dinner (Old age I guess.). 

The first time I heard the following song, probably introduced to me by one of the big boys, I thought, Well that perfectly sums up my New England upbringing and falling for a Confederate boy on a motorcycle.

                       The official video is too naughty for us, so here's just the music. 




Over the years we've cobbled together a nice mix of proper New England and easy-going country; something like this: 

When the babies and tears started coming and the money and fears started leaving, we happily settled into a real, good life; something like this:

And now, we're trying not to blink too much; something like this:

Ken's summation; something like this:

So for all those who never thought we'd make it, or at least never thought we'd amount to much, I say Ha Ha.   Because I'm classy like that.  Actually, how about,  I do desire we may be better strangers.  Because I love the proper Bard and his proper insults!

 I still think that I (and all the children) got the better deal and I'd choose my country boy all over again.  In fact, I really miss that motorcycle!  Happy 22nd Anniversary, Ken.

13 Years of Homeschooling; 13 Great Ideas

My firstborn has graduated from a high school course of study accepted by the state of Alaska.  Thirteen years of homeschooling now and I feel properly disposed to present some great ideas (And this is how it usually happens.).   In no particular order :

1. One hour a day "alone with your thoughts."  Not a nap.  Never call it a nap.  This sounds a little fruity, I know, but the real reason is for me to get reacquainted with my thoughts, changing this . . .

                                                          
into this . . .

2. Family newspaper.  Two or three times a year, we hunker down and assign articles to every child for the Howelling Herald, printed on that longer-sized paper.  We do recurring features such as Outdoor Odysseys (excursions around), Family Accomplishments  (from black belts to potty training), History page (reprinted assigned paragraphs), and Classifieds (from lost cufflinks to cheap plastic crap for sale).  Smaller people just color stuff, which I scan and add right in, along with witty commentary.

3. Cheap ziplocs, tape, bandaids, and paper clips as toys.  Dump onto the floor and watch them get all MacGyver on you.  Amazing creations.

4. A time line made of 3x5 cards stuck to the top of the wall where a wallpaper border would be.  Helps to consecutively organize discombobulated reading selections and also helps to place into perspective things like an 8 year old's obsessesion with ancient Greece.  I point to the section of the wall where it fits; he draws another 3x5 card with a minotaur ~ bingo!  School.

5. Lots of reading and lots of legos makes an excellent curriculum.  Corresponds nicely with :

6. Pair up older children with a younger sibling for a half hour blessing (I call it a spiritual word because it guilts the big kids.).  This means that big kids can play forts and legos without embarrassment and little kids get to be cool.

7. If there are male children, you can create an entire curriculum around battles.  Choose 6 ('ish) important battles to read about.  Read more, all about the country (ies) and the reasons; this is  social studies.  Recognize and dig into a relatable science topic.  Then write about it, play-act it, draw pictures of it (language arts).  An easy example is Gettysburg.  It's fun to recreate the battlefield in your yard or livingroom with small soldiers.  There are strategy books for older kids and picture story books for younger kids.  Watch it, if they are old enough.  Science is battlefield medicine, which is pretty gruesome.  Which means they loved it.  Acutally, my daughter did, too.

8. An IV in a kid's arm that needs to be flushed and run through with antibiotics is great science.  If you don't have someone with cystic fibrosis in your family, sorry.

9. Pet care = science.  But only if you make the children do the care and then draw pictures of things like the creepy rash on the dog's belly.  Extra points if they mix up tea tree oil and warm water and bathe it.  If you make them write about it all, you've got language arts; if you make them do graphs of information like weight and amount of food and exercise, you've got math.

10. Boxed curricula works just fine and may be exactly right for whatever season you're in.  So is unschooling. 

11. Elizabeth Foss' book.  Enough said.


12.  My shelf.  The red basket squares hold, from left to right, science equipment, math manipulatives, and art supplies, with books on the bottom corresponding orderly.  I love my shelf.

And my 13th great idea ~

13.  We stuck with it.  With all the stress and wondering and trouble and comparisons, we did it; for there is also fun and learning and companionship and education. 




REES IS ALL FINISHED WITH HIGH SCHOOL!!!!!

OK, I'll stop yelling now. 
I'll get to next year's plan in a few weeks.
When I think I'm able to stop yelling.

Love, 
Allison