Tuesday, September 24, 2013

We'll See

Rees just drove away for a 7AM appointment at the hospital, where he will receive his first fistful of Kalydeco and VX-809. After months of preliminary screening exams and waiting on recovering stability from a tough spring, he will swallow down brilliance. Even if he receives the placebo, in six months he will get the real thing, so the march has begun. He is paid for offering his body to science (as he says), which is always attractive to an eighteen year old!

I don't even know the names of the scientists, doctors, researchers, and whatever other job titles who are involved; but I love them. I hope they are paid well (and this is why we happily support the CF Foundation and aggressively oppose socialized medicine ~ ambitious, talented people should be paid.). I hope they keep working. I hope there is a way to express my ... thanks, love, respect... all of it and more.

We've been crushed with disappointment so many times over the years that I'm OK with smiling, but never allow giddiness. It is a trepidatious hope. The first seven years or so, even though he wasn't healed, we were going to take control and have him be the healthiest CF kid in the world. I cooked right, cleaned right, exercised him right, did his lung chores right. But CF is still CF and he still needed hospitalization after hospitalization. Then I was introduced to the World Wide Web and learned that some kids had never been hospitalized at all (It truly takes its course differently in every body without prediction, even with similar mutations.). Disappointment after disappointment, CF controls. Now, aside from skeletal management (lots of butter, ice cream, and gravy; stay away from hot tubs and dripping, sneezing noses), we live. Everywhere. Because remaining in a filtered home with none of us ever leaving (and bringing home bugs) or knowing other people, even with CF, is not living.

Here's a possibility that a handful of pills can unfold the CFTR protein, and, well ...

We'll see. We'll just have to see.


Saturday, September 14, 2013

Home Organization Response

I recently read a post on home organization from which I gleaned a few good ideas (brown wrapping paper with ribbons and clear, over-the-door shoe holders), but overall, it was far too rich for my blood. After 23 years of small houses and our now nine-person family, I've become a great organizational hack. So if you, like me, do not have a linen closet, a laundry room, a mud room, a garage*, or a smart phone; can neither travel with your children nor hire a carpenter; and the thought of a $62. bra (which would keep us in potatoes for months) gives you hives, not joy . . . maybe you'll like some of my ideas.

Here's where Ken and I keep much of our clothing (under the futon where we sleep) because there's no closet in the den. Since there's no closet, no marvelous organizing ideas.

This is right next to the futon, four of those things from Walmart, filled with Addie's clothing, DVDs, and my unmentionables. Closet, I guess.

This is my "linen closet" downstairs** that holds a few books, extra TP, and four towels (Very important to keep on top of the laundry, with only four towels!).

My laundry room is a piece of the hall with a small counter and shelves. Not big enough for  sorting or folding, so I dump laundry onto the futon ~
~ and I'm not sure why the baby's up there, but  we usually fold in the afternoon with a short  DVD, then the kids trot around and put it all away. Perfectly, of course.

One of the ideas was to sync your calendar with your smart phone.  Don't have one, so I sync my calendar with my steel trap of a brain.

This table bench Ken built himself. We cannot hire a carpenter and he is not one, but we want stuff, so  he picked up a DIY book and tried. Viola! Three or four kids sit on this at our table and it opens up for me to toss pots and pans ~

~ which they wanted to illustrate better for this post!

Our vacations do not involve restaurants, hotels, or attractions, so  a travel journal is unnecessary. We  use tents, sleeping bags, hot dogs, marshmallows, and porta-potties (because I require some civility in the middle of the night). And look at the double duty this $20 beaut can handle: morning coffee cart!

*This is the summer of the garage so by the new year, we will have a garage to organize and Rees will move out into the efficiency apartment on the side. 

**Ken did build another shelf-thing in the upstairs bathroom along the back wall. It's a rectangle box with doors that I put more towels in (the ones too crummy for the nicer bathroom!). I could not locate the camera at the time of this writing to show you (I guess I don't have much of a steel-trap brain...).

Happy weekend ~ laugh with me!

Thursday, September 12, 2013

PHFR ~ Farm Resurrection

After a year off from backyard hobby farming in order to redo and repair, we've tossed a few animals back into the yard. Still need to save money to fence in an acre of the field for goats, but the garage gets all the money for a few more months. The PHFR order is wrong, but I don't have time to rearrange the pictures (I'm at a 1st grade level, tehnologically.) and I told the kids it's just a few minutes before morning prayers, so ~

She's a little sad because her friend was sold at the AK state fair.
Sunning the bunnies (Today is the due date for one of them; please God don't let this happen again.).
Rees fenced off a large section of woods behind the house and they're happy (I think.).
Cleaned out barn is a perfect reading and cat-cuddling place (Life of Fred math, in case you're interested.).

We are already enjoying fresh eggs and look forward to adding domestic meat to what my men hunt and catch. We will have arrived when we have fresh milk again (Funny how my idea of success has changed over the years...).

OK, time to get out that catechism...
Hope it's a happy day; Our Mother's Daughters will help!
Love, Allison

Monday, September 2, 2013

Uncle Walt, Bill Federer, and the Bishops on Labor Day

               Walt Whitman (1819-1892)
                       I Hear America Singing.
    I hear America singing, the varied carols I hear, 
    Those of mechanics, each one singing his as it should be blithe 
              and strong, 
    The carpenter singing his as he measures his plank or beam, 
    The mason singing his as he makes ready for work, or leaves off 
    The boatman singing what belongs to him in his boat, the deck- 
              hand singing on the steamboat deck, 
    The shoemaker singing as he sits on his bench, the hatter singing 
              as he stands, 
    The woodcutter's song, the ploughboy's on his way in the morn- 
              ing, or at noon intermission or at sundown, 
    The delicious singing of the mother, or of the young wife at work, 
              or of the girl sewing or washing, 
    Each singing what belongs to him or her and to none else, 
    The day what belongs to the day—at night the party of young 
              fellows, robust, friendly, 
    Singing with open mouths their strong melodious songs.

Hope it's an encouraging, wonderful day, friends!
Love, Allison