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.