CF Makes Me Weird

I've adopted some weirdnesses over the years that can be credited to CF in the family ~



I say things like, Only two grams of fat?  No good; put it back.  Oh, this one has ten grams of fat; put six in the cart.  Great for the kids' weight but folks in the grocery store think I'm weird.  I kind of enjoy that.

Not enough fat and calories, of course, and you can't put gravy on fruit snacks.

Every time I read a story about someone with physical problems, I make an announcement.  Sometimes I preach.  The lady who contracted the flesh-eating bacteria?  We marvel at her fortitude.  The Florida bar with Tuesday night dances for differently-abled?  Watched the video twice.  This I do as an exposition of the amazing mysteries of life.  I think it's brilliant; my children think it's weird.

When I meet another lady with children with health problems, I want to be BFFs.  Weirds some people out probably, and I do try not to gush, but anyway How old are your kids and how are they doing and who's your doctor and we should definitely get together next week OK?

I 'm not actually this calm.

I am very calm hearing about or even watching medical procedures.  When friends relay to me surgery stories, there is no wincing or OMGs.  When I've had to take kids to the emergency room, I'm cool and helpful   (This has caused trouble for me, though, and a Big Accusation which is a story for another post and because of which I will need to fake faint or something should there be another ER visit.).  Most folks understand.  Some think it's weird.


The sacraments, songs, and prayers of the Church are so strongly meaningful to me, I sometimes feel that I must be the only one.  I am aware that theologically, the Good News is for all, but when you're clapping a coughing child in the middle of the night while swallowing the desire to run away screaming, words like. . .

Do you reject Satan and all his empty promises?
Shepherd me, O God, beyond my fears, from death into life,
Have mercy on us and on the whole world.

. . .console my sad soul and soften my less-than-holy thoughts.  Pure love.  Weird.


You can cease praying for my personality.


Laughing maniacally,
Allison                                                                            

Poetry, not Multiplication.

MY SHIP

By Clare A. Howell

My ship is a well-built ship;

She loves to take a dip.

When the sun's high, her masts reach up to the sky.

The wind fills them, those sheets of white;

The wind, with all its might

Pulls her away from the dock.

The water is her frock.

She lives for it; she was made for the water.

With a bluish light the ocean is lit.

When she plows through the wet sea, white waves wash up to meet her.

All this was simply meant to be.

Clare at work.  Don't ask; I have no idea.

This is my girl in our yard a few days ago, rejecting all other responsibilities because she had a poem idea, I imagine after our family visit to Seward.  Seeing her happily scribbling away confirmed to me that she does have a decent attention span and that she is certainly capable of focusing on a project.  As long as it is not long multiplication or division.  She is only half-way through the 4th grade math book (actually, 2 different ones), refusing to give the puzzle of organizing place-valued ciphers any mental energy lasting more than 5 seconds.  I have (mostly) given up the fight and I (usually) don't mind.  Peace in the home is paramount.  We're homeschoolers, after all, and I'm not supposed to care what the government system says a 10 year old should be able to master.  After all, look at the poems and artwork and photographs and stories she delights in creating.

She took this in B&W with our goofy camera and when I asked her why, shrugged.  "I could just tell it was the right way to do it."

Aren't we all like this?   I cannot manage a daily Rosary or the Divine Office, but I love participating in Holy Mass and beginning our days with family prayers.  My husband refuses to again attempt to read music, but is terrific at taking the kids out survival camping and tackling tough conversations.  Some families are good at fabulous field trips; others are good at evening story time; others are good at stimulating science projects.  If you do all of these things, don't talk to me. 

She is who she is, with talents and troubles.  So am I.  So are you.  Our beloved, now retired priest once told me in Confession, "Your personality was created by God and it is good.  No apologies.  Let's pray for the Holy Spirit to soften the sinful edges.  Still you, but more like Jesus."  God doesn't yell at me because of my concentration troubles and I mustn't yell at Clare because of her mathematical troubles. 

Instead, I publicly celebrate her talents right here on this blog and pray for the sinful edges to soften.  All for the glory of God!

Celebrating Poetry, not Multiplication ~

Love,

Allison

Such beauty; such composition; such . . . art!





Anniversary doodling for us.



                                        

                                              

                                                                   

Alaskan, Catholic, Homeschooling Family with Kids with CF ~

Or, our entire family went camping this weekend.  It dawned on me, while awake and freezing in the tent the second evening because I switched sleeping bags with Clare and she got my down one, that this trip embodied my subtitle, which is My Life.



ALASKAN:

We live in a gorgeous place and when we drive a few hours south to Seward, on Resurrection Bay, it's gorgeous-er (if that's possible).  Behold ~

From the top of Mount Marathon, which Ken, Rees, and John decided to hike/run at the last minute.  Sounded fun, they said.  OK.



Lots of other people thought it'd be a good idea, too, so they asked someone to take this shot.  Thank you, Stranger!



It really was hot, on the washout plain of Exit Glacier, but Ken left his warm-weather clothes at home and Luke wanted to dress like Ken.



This was usually all we saw of Clare: hunched over, staring intently at some small something.  Or running. 



Like a cat, Ian found a patch of sun for the chilly, early morning.  Meow.

CATHOLIC:

One of the children was grounded.  I know, I know, grounded on vacation?  But it was either that, or cancel the whole thing and by golly, I wanted to be close to the ocean because I grew up in SE New England and I missed it.  Here is where it is wonderful to be Catholic.  It packs a whole lotta more punch to answer a belligerent child with, "...because all I care about is the salvation of your eternal soul!" than with, "...because you're rude."  If the salvation prayer, said at 4 years of age guarantees Heaven no matter how disobedient or naughty or rude, than you don't get to yell gently admonish, "Proclivity to venial sin leads to mortal sin and over my dead body are you going to Hell!"  

It all ended up just fine.  Marvelous, really;  all was well about half-way through.  Thank you for your prayers, dear Saints Augustine, Terese, Anne, and Our Blessed Loving Mother!   (See, Catholic again.)

HOMESCHOOLING

When one homeschools loosey-goosey, as we do, a trip like this is golden.  See stuff; exclaim over it; take a photo; ask leading questions even if you don't know the answer; and google more information at home.  I present :

A Stellar's jay, noticed and photographed at Primrose Creek; identified at home with our books.



Exit Glacier's washout plain play led to map-reading and rock-skipping.

Which led to this discovery at home, while looking up the physics of it all:

Bingo!  School.

 WITH CYSTIC FIBROSIS

Oh yes, can't forget CF.

The flutter valve and baby percussor and pills-in-ziplocs and water bottles and applesauce are small enough to fit in any baby carrier or backpack, so easy-squeezy to take care of anywhere.  Rees fired up the van in the early morning and evening in order to plug in a converter and nebulizer for his lung chores.  He and John played cards together.  I no longer ask what in the world they talk about.  It's all good.

*I just realized that I got the order wrong between the subtitle and this post title, but my quiet time here at the computer is over, so oh well.*

Happy Alaskan, Catholic, Homeschooling, CF-ing (That sounds bad, but you know it's not.  Well, it is but you know what I mean...) Summer~

Love, Allison 

In direct defiance of Michelle O's nutritional directives, the Howells toasted Twinkies over our fire.













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

Not To Be

Well, Rees' really, really hoping (See previous post.) to avoid a hospital admission and enjoy a little brother's birthday and his own graduation ceremony and Great Strides is not to be.

                                                   Providence Hospital, our other home.




Sometimes, you can do everything right with nutrition and exercise and medications but those sophisticated bacteria still win and healthy lungs are not to be.

                                                        Pseudomonas aeruginosa             




Sometimes, you can read the right books, pray the right prayers, listen to the right music, and watch the right movies, but you still grit your teeth and shake your fist because being spiritual and heavenly-minded is not to be.

                                           Right now, I just do not care about heaven.






Sometimes, the knowledge that Jesus loves my kids more than I do makes no sense, and consolation for my hurting heart is not to be.

                                              Safer than a mother's arms, but still...






So for the next three weeks, we'll be in between Providence Hospital and home, asking Saint Therese and Emilie Gamelin, foundress of the Sisters of Providence, to pray for Rees.  And Addie.  And their doctor.  And their parents.  And all of us.  That certainly is to be.


Love,
Allison