Monday, December 24, 2012

Slacker Catholic Family Advent

Someday, our Advent will be magical and holy and angelic.  For the forseeable future, I'm resigned to a houseful of fun and wild with a long wait for the 25th.  Oh well.

As far as decorations, we never can be spiritual and wait to put up/decorate/light the tree, so we do it as soon as possible, then call the children's agony of waiting a whole month for there to be actual presents under the thing, holy awaiting.

Yes, it's tipped.  And fake.  But it's UP.


 
Our other decorations are cheap and easy and transform the whole house: I waltz about, flinging rectangles of red calico and gingham on every horizontal surface, as well as behind glass.  I also wrap pictures and paintings to look like presents.  I do not sew, so the edges are cut with pinking shears (sorry, Mom) ~

 

This is a print of some chickadees and birch trees in real life.  And a thrift store, lysol-ed throw pillow.

This is an East coast beach painting in real life.

Mary Engelbreit card in real life. Towel, $1 at Target.

Sorry about the potty picture, but not even the bathroom is safe.

Tea cupboard with wrapping paper taped inside the glass because I don't have enough cloth.

 


These old Santa prints are thrift store treasures (See the missing bottom edging on the one on the right?) for a couple of dollars, as are the knick-knacks on the mantle.  I did purchase that wise men hinged nativity new a few weeks ago (Wal-mart.  $17.).

 

 
 
 
 

Our Advent devotions are so lame, I hesitate to write this down, but the hope of  uniting with another slacker friend spurs me on.  I only read this book for morning prayers and do not even have a Jesse tree for the meaningful ornaments.


We do pray the Saint Andrew's prayer five times each morning.  I have a kid type it out, make copies, then cut and glue onto construction paper.  We're fancy like that.

 



I never remember about the shoes or coins, chocolate or real, for Saint Nicholas' feast day on the 6th, but we watch this ~
 
 
 
 
And we eat Mexican food for Juan Diego on the 9th and Our Lady of Guadalupe
 on the 12th, so we're good there.


The Advent wreaths some of the kids made earlier in the month fell apart but one gets lit at church so that lets me off the hook.  It does.


Now, the worst and most wonderful thing we do (depends upon if one is a Howell child or adult) is to attend Mass Christmas morning before opening presents.  Yes we do.  We make them wait.  Barreling down the stairs, all morning-breathed and bathroom-needing-but-refusing-to-go is a sorry display and it's all over in half an hour.  So for the past seven years, now that we're Catholic and there's such a thing as a Holy Day of Obligation, we're all over that.  Stockings they dump out first thing, as they find some sort of breakfast in a foil wrapper and juice box.  Then it's back upstairs for decent dressing and washing up; church; and home again.  The mood is much better and it truly, tangibly puts Jesus first (whether they like it or not). 

Why do we give each other gifts when it's Jesus' birthday?  Because it makes Him happy when we love and give to others.


Happy Birthday, Jesus!



It's almost here!
Love,
Allison

Wednesday, December 12, 2012

CF Round Up: Prayers, Food, and PFTs

 

1.) The Saint Andrew prayer, during Advent, is very special to me; Rees' health is always one of my specific intentions.  But this year, I grew up a little more and have changed it to a cure for CF (Thank you, CF friends who live inside my computer!).  My other intentions are for Ken's job situation and my patience situation.


2.) Lots of reading on essential oils for managing CF.  Some seem magical.  I'm reminding myself that if something could kill pseudomonas without damaging delicate pulmonary tissue, our doctor would know about it.  But I like the word manage instead of miracle (well no, I love the word miracle...) and managing is how I'm using them: Breathe blend and tea tree oil for Rees; On Guard blend for Addie and everybody else.  Oh, and Whisper blend for me. If anything, we smell wonderful! They can be purchased here.  (Warning: it's very hard to choose!)



3.) Addie's weight for height ratio is less than 50%, so per the doctor's orders, I'm giving her something solid twice a day (Actually, he told me three or four times a day but the sassy little thing is not complying.).  Greek yogurt mixed with banana, sweet potato, or avocado is a hit; oatmeal and ice cream are not.  She still nurses 6-8 times in a 24 hour period and her lungs continue to be clear.


I bought an amber necklace, too.  Don't know if it works, but it's a lovely decoration!

 
 
 

4.) Rees' checkup yielded 20% declined PFT, so he's on ciprofloxacin for 10 days.  If there's no improvement, then a 2 week tune-up at Providence Hospital.  He'd been dancing around being sick for a few weeks (little extra cough, little extra congestion) but felt fine and thought he'd done great on the PFT.  Oh well.  Can't fool around; he begins college classes January 9!
 
 

5.) And, OUR CLINIC HAS BEEN ACCEPTED FOR PARTICIPATION IN THE VERTEX STUDY!  This, my friends, is magical stuff, as it corrects the basic defect in CF (a folded protein that messes up the chloride channel within the cells).  We, like everyone else, hope for the drug and not placebo.  God's will be done.


Time for more Christmas shopping; our lessons have been reduced to mathematics and reading stories . . .

Happy Advent!
Warmly,
Allison

Sunday, November 11, 2012

Eighteen




Rees turned eighteen yesterday and although I'm rarely at a loss for words (appropriate or not, unfortunately) I've been staring at a blank page for half an hour during this, my all-alone-quiet-time.   Ken already wrote a perfect, poignant letter and tucked it inside a Man Book, but I've scanned some great old baby pictures that beg to be shared, so blather on I will . . .



This is the best picture so it's first.


He made me a mother. Although too much comparison time on this computer often renders me depressed by my maternal flaws, I love motherhood and I love him very much. I also like him very much. He's a pleasant, funny, honest, hardworking guy who lives his Holy Faith. He likes country music, pizza, backpacking, hunting, Tolkien, and the USMC. He does not like Josh Groban (I'm working on that.), sushi, hybrid cars, Barack Obama, clapping during Mass, and cystic fibrosis.  He can climb Pioneer Peak, field dress large animals, argue politics, play with his little brothers and sisters, and ju-jitsu bad guys to the ground; but he can't sing or cook (Sorry, Future Wife.).

Because of CF care, we let him do things that first-time parents rarely do: eat cake, watch TV, and nap in our big bed, but it didn't ruin him and mellowed us more quickly, which the other kids appreciate. Because he was our firstborn, we were certain he was the brilliantest boy ever and began schoolwork early. But because he grew up to be logical and figured that out, he slowed down his pace near the end (You never did give me that essay on The Abolition of Man, did you?).

So he's eighteen now ~ working, taking classes, driving around with friends, hiking alone, and taking care of himself. I still do his laundry and fix him food and stay up late watching movies with him, as we move into the next life. Along with sweet, teary nostalgia, I look forward to seeing where Our Lord leads him and ask the Blessed Mother to join me in prayer for him.


Two weeks old at a friend's wedding.

Driving to Alaska.

Not quite a year old (at Providence Hospital).

Two years old.




Here are the Man Quotes that Ken put in his letter:


“Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place and I don't care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard ya hit. It's about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That's how winning is done! Now if you know what you're worth then go out and get what you're worth. But ya gotta be willing to take the hits, and not pointing fingers saying you ain't where you wanna be because of him, or her, or anybody! Cowards do that and that ain't you! You're better than that! I'm always gonna love you no matter what. No matter what happens. You're my son and you're my blood. You're the best thing in my life…”
-Rocky Balboa
Speaking to his son in Rocky Balboa (2006)


“In any moment of decision, the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing.”
-President Theodore “Teddy/TR” Roosevelt


“Now what should happen when you make a mistake is this: you take your knocks, learn your lessons, and then move on. That’s the healthiest way to deal with a problem.”
-President Ronald Reagan (1987)


“On some positions, cowardice asks the question, is it expedient? And then expedience comes along and asks the question, is it politic? Vanity asks the question, is it popular? Conscience asks the question, is it right?



There comes a time when one must take the position that is neither safe nor politic nor popular, but he must do it because conscience tells him it is right.”
-Dr. Marin Luther King, Jr.


“If running against men has wearied you, how will you race against horses?  And if in the land of peace you fall headlong, what will you do in the thickets of the Jordan?”
-Jeremiah 12:5


“Avoid profane and silly myths. Train yourself for devotion, for while physical training is of limited value, devotion is valuable in every respect, since it holds a promise of life both for the present and for the future. This saying is trustworthy and deserves full acceptance. Let no one have contempt for your youth, but set an example for those who believe, in speech, conduct, love, faith, and purity.”   “…man of God… pursue righteousness, devotion, faith, love, patience, and gentleness. Compete well for the faith. Lay hold of eternal life, to which you were called when you made the noble confession in the presence of many witnesses.”
-1 Timothy 4:7-9, 12; 6:11-12


Last night.



HAPPY BIRTHDAY, REES!

WE LOVE YOU AND ARE PROUD OF YOU!









Thursday, October 25, 2012

Breastfeeding a Baby with CF

Do everything this book says.  The end.

I should talk more ~


Ecological breastfeeding is what it's called and here's how it works:

Frequent and unrestricted nursing for nutrition and nurturing, without the use of pacifiers or bottles or cups or pumps.  This requires a mother and baby to be physically close for a good year, which means that it's for full-time homemakers only.  Giving a baby everything he or she needs at your breast keeps up milk production, rest, and health.

Here's why it's especially good for babies with CF:

Good nutrition that is easily digested and strong emotional bonds give medically fragile children comforting support.  Of course, this is true for all kids; my point is simply that when a child has health problems and already operates at a deficit, ecological breastfeeding is a very real way to put an ace in their hand. Our firstborn was diagnosed failure to thrive at 6 weeks, put on formula, then diagnosed with CF at 9 months.  It was too late to fill him up with breastmilk.  Our babies after him were fed on demand as we awaited the genotyping results.  Four became rolly-polly Mama's boys, without CF.





(You get the idea!)
And a chubby little brunette girl, too (Can't find any digital photos...).

Then we got another, littler girl with CF.  Ecological breastfeeding took on new intensity as her symptoms became clear and the diagnosis finalized.  She has not gotten chubby with frequent nursing, but she has held her own and remains healthy.


Desiring both to make sure that she was getting the most amount of good calories and that I was not nursing to fulfil my needs,  I recently compared nutritional information for breastmilk with a few of my favorite first foods for babies (whole milk yogurt, sweet potatoes, bananas).  I promptly shelved the idea and settled down on the couch with my current book and my baby, thoroughly convinced (again) that the perfection of breastmilk is all that's needed!   A bit more googling of babies with cystic fibrosis and breastfeeding yielded disappointing results (Not in the information, but the amount). This wonderful article from the LaLeche Leaguethis encouraging one from a center in UT, and this interview by a popular CF blogger were all I found.  Since they are awesome, maybe that's fine.


I've also enjoyed carrying my babies in a sling, as it keeps them upright to aid reflux and near my heart to aid breathing.  Plus they're fashionable and an adorable accessory!  


 

So it is absolutely possible to successfully nurse your CF baby.  It is at least absolutely worth committing to try a month of frequent, unrestricted everything at the breast (food and pacification) and check weight.  If it doesn't work, then you'll know that you gave it your all and that you can embrace and thank God for life-saving formula.

With affection and support,
Allison


"You drew me forth from the womb and made me safe at my mother's breast."  (Psalm 22:10)




Thursday, October 4, 2012

Story

 
I have a story in the latest Chicken Soup for the Soul book called Thanks to CF.
 

That's all.

Excuse me please while I dance a bit!

Love,
Allison

Friday, September 14, 2012

Six Months with Addie

This past Valentine's Day, our seventh baby was born, a second girl we named Adah Marie, after our grandmothers in heaven that have been praying for us.  We call her Addie, and she has cystic fibrosis.



Like her eldest brother, she needs pulmonary therapy thrice daily (gentle patting on her chest and back to loosen thick mucus for coughing up), digestive enzymes before every nursing session, extra salt, probiotics, albuterol, and antibiotics.  She will never know differently unless a drug is discovered that targets the genetic defect (Let us pray...).

Even though I understood the genetics, thanks to great high school biology classes on Mendel's pea plants and I knew there was a 1:4 chance that CF could resurface, I nevertheless fought near constant nauseous panic the first few days and weeks as the symptoms became clear.  When the results of the genetic test returned Two copies of DF508 mutation.  Cystic Fibrosis Diagnosed, I cried.  Bawled, really, because this is where the theological truths of our Holy Faith crash against the anguish of heartbroken parents in a battle of weeping, fighting, swords, and clubs.  It felt like that, anyway.  I didn't want to visit friends with healthy children; maybe because I was jealous and maybe because I didn't want to be a downer.  I didn't want anyone else to hold her.  I told her I'm sorry a million times (I counted.).


But I've gone through these wranglings before and this time I have 2000 years of Church teaching and a Holy Mother to help.  Catholic theology holds that children are a gift, not a right; that suffering can bring us closer to Jesus; and that people are made for God.  Did I really believe what I'd been writing about on this blog for the past year and a half?  (Of course, thanks be to God and the prayers of Saint Therese!)  The Holy Spirit reminded me of the embarrassment of riches I have in our sacramental marriage blessed with so many children, and graces pouring upon me; so I picked myself up, made a morning offering of thanksgiving, called my friend over to tea, and proudly passed off my pretty daughter for auntie-ish snuggles.

We've figured out a good daily groove for Addie's care (Which basically means a chart for the others kids to keep track of who gets to do her therapy and squirt stuff into her mouth.) and we're delighting in the cuteness of our little girl; for CF chores and all, she is our own baby with her own personality ~


Spitting raspberries.

She slides down just enough to read the instruction stickers.

.
Loves to jam her hands into her mouth.


She especially digs her bouncy seat ~ see her feet in the air?


Quiets right down when Ken plays his guitar.


Clare and Addie ~ my girls!


Big Red is her friend.





Be still, my heart!





Happy six months, Adah Marie!  We are so thrilled and thankful for you!




Wednesday, August 29, 2012

5 Things I Can Do, Now That I'm Catholic

(I know, I know.  Some Catholics do not do these things and some protestants do.  It's simply a little fun in my life.)


 1.)  Celebrate Halloween.  Yes, sir, I love Halloween.  My only childhood memories of trick-or-treating are from photographs, as all that Devil nonsense ended at about age 10, when my parents "got saved."  Now I encourage my children to pick something really dead and scary or a saint, making sure that the identifying prop is gross (like bloody arrows for Sebastian).  I love telling them that it's a night to poke fun at Death, for the next day celebrates our beloved friends in heaven.  Plus I don't have to make breakfast, lunch, or snacks the following few days. As long as they have glasses of milk, they are ordered to eat it all so that the buckets don't languish, every sneaking Tootsie Roll ruining lunches for days.






2.)  Drink wine.  Nectar of the gods.  We were taught that Jesus drank "new wine," certainly not fermented alcohol, and the licensure contract for the Assemblies of God required a signature whereby we agreed to abstain from alcohol.  No more.  We choose; we enjoy; we thank God for luxuries.  My favorite is to sip a glass of red wine while cooking dinner.  Gets me in touch with my 1/4 Italian.









3.)  Enjoy secular art.  My salvation is neither in question nor jeopardy if I appreciate art from unbelievers, or different-believers.  If something is good, true, and beautiful; if something draws me outward and upward, then I can thank God for talent, regardless of the artists' religion.  No guilt.









 4.)  Recite rote prayers.  Such a weight lifted when I no longer had to create my own prayers.  As a brand new Catholic, it felt like cheating if I read someone else's words, but I was healed of that problem right quick.  Catholic prayers, even when prayed all alone and for personal reasons, always contain an element of community, witnessed by the many inclusions of plural pronouns like we and us.  The Communion of Saints is a consoling component of the Faith, and something I'm deeply grateful to be able to point my kids towards.






5.)  Have all the babies I want and help get them to Heaven.  No need to pretend that there's anything more important or spiritual or grave.  Or delightfully fun!  My ministry is husband, home, children and it is full-time  ("Full-time ministry" is the pinnacle of protestant sprirituality and pride.).  The world is God's and we use our fearfully and wonderfully made selves to know Him and to make Him known (Halleluia!).  But I do not carry the weight alone, for my Holy Mother Church makes available much aid. 



So I'm happy to be Catholic for all the theological and historical truth, and for all the little extras that make the journey merry.

Some of the kids on Assumption Day.


Let's be happy and enjoy the world!
Love,  Allison




 

Saturday, August 11, 2012

Books and Food

I've fallen into the Rainbow Resource catalog and am unable to speak coherently (Have you seen that thing?  No wonder I've avoided it for so long.  Lawd.).  I'm ordering someone else's plan because I do not want to create my own this year.  I do want to make time for things like cooking well-thought-out meals, cleaning proactively instead of reactively, reminding myself how to play the piano, and taking showers before Ken arrives home.  So I will organize the materials on each child's shelf and answer their brilliant questions in a lilting voice while practicing my scales or reading Chesterton.  It's a good plan.  It'll work. 


That introduction is my excuse for a short post.


What I've got is wonderful, though.  Food and drink it is:
Rees' new favorite shake and my new favorite summer zucchini meal.



TROPICAL SHAKE

1 cup of coconut milk  (Ken gets small cans from Sam's that seem thick like evaporated milk.)
1 cup of OJ
1 cup of frozen mixed fruit (Ours is a blend of strawberries, mangoes, pineapples and peaches.)
A blop of honey (Maybe a tablespoon.)

It's the prettiest pale orange color and he appreciates the fruitiness, as he says he's sick of chocolate and mocha  (Who'd a thunk it?).




ZUCCHINI BAKE

Fill whatever size pan you want with zucchini circles.  Cover with shredded cheese.  Cover with bacon bits.  Bake until desired veggie tenderness, cheesy meltiness and bacon crunchiness.  Add some sort of bread and supper is ready.


I even have Clare do it so that I can continue my path down homeschool catalog insanity . . .
Kidding on the insanity part; this is me.  It is.


Happy weekend.  Happy studying.
 Warmly,  Allison













Thursday, August 2, 2012

Life Site News




Life Site News writer Pete Baklinski has written a delightful article telling our story, which I'm going to link to in the About page and the Helpful Links page.  It made me smile and cry; hope you will, too.

Warmly,
Allison

Monday, July 30, 2012

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                                                                            

Monday, July 9, 2012

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.