What's Going On

Flu. The doctor thinks that Rees caught the flu, which stirred up the pseudomonas colonized in his lungs. In these past ten days hospitalized, his pulmonary function and oxygen saturation dove down, while his blood sugar flew sky-high. So now he's home with a PICC, nighttime oxygen, and insulin; and I assume amateur nurse status once again. After sleeping for nine uninterrupted hours last night, he was almost back to his normal personality, making the burden of home healthcare completely worth it.

The response of his college professors has been first-rate: waiving penalties for his class cuts, and even rescheduling research papers and final examinations. Rees told me that he assumed (Yes, I did tell him about that word.) their apathy toward a bunch of freshman taking their classes to fulfil general ed requirements, but is pleasantly surprised and grateful for the willing care extended to one eighteen year old student.

Rees is cool with this.

 

This is me. Or is it "I?"

The serious consequence of this exacerbation is the emergence of diabetes. Many adults with CF develop a form of diabetes, making weight gain even more difficult. I guess there's no time for me to get soft in the kitchen; I've been studying and experimenting with nutrition for eighteen years and it's time to get back to work to find a new groove.

Rees has already been walking in our woods and plans a short jog tomorrow. Good old-fashioned exercise is one of the best ways to keep lungs and spirits clear and winter is breaking up in Alaska (I think I only yelled about the Mud twice.). He's hoping to get signed up for this drug study before his pulmonary function gets too high (weird problem).

A shout-out here for the nurses and RTs that take care of CFers. Quite a few have known Rees and all of us his whole life, helping me through those terrible beginning months and playing with my constant stream of new babies that weren't even patients. They've decorated his room for high school graduation, pointed local newsmen to his room for TV sketches, given us bags of second-hand clothing, and saved the best toys from the playroom for Howell kids.  I wonder if our bear-hug greetings break a non-fraternization rule? Ah well.

Rees doesn't play here anymore, but our smaller ones do. See the great mural on the right? The entire wing is painted like the Alaskan outdoors.

And our doctor? Whatever he makes, he's worth twice that. He comes every single day and answers every single question ~ no sighing or annoyed body language or haughty looks. If his day is full and we need him, he tells us to come after hours; when Rees wanted to get home with meds, Dr. R. showed up in his room and completed the discharge paperwork at 7pm; when Rees kept removing his oxygen cannula, he got a little snippy with him, rightfully so. Priceless.

So the flu got him, but he's on his way back up and summer is on its way back up and Addie's lungs are still clear, thanks to antibiotics and steroids. Things are looking up. Whew.

Alaskan kids in breakup.

I still put her in a snow suit because I like it. I mean, she likes it!


 

Happy day, happy spring, happy Howells,
Allison


P.S.~ Sometimes during goings-on like this, I don't want to be around normal people with normal kids. Nothing personal; it's me. Just so you know!

Happy or Not Happy

Eighteen year old dudes with CF that keep active by working part-time for a construction company make their mamas happy, happy, happy.

Eighteen year old dudes with CF that keep active by working part-time for a construction company and spend the day spraying insulation indoors and tell their mamas that their mask was black inside at the end of the day make their mamas . . . not happy, not happy, not happy.

Sure, he's cute and all, but insulation, boy?

I miss the little dude who would do whatever I said. Usually.

The building looks fantastic, though, and we're hoping his lungs still do. Saint Therese, pray for him please.

Still happy and proud,

Allison

Not Cystic Fibrosis

Do you get this baloney on your news feed like I do?

The message here is that if people would eat fresh, organic (wicked expensive) fruits and vegetables, that medication would be unnecessary; that people who turn to doctors and medicine and Big Macs are foolish and uninformed. I've taken an antagonistic approach and now comment "Not cystic fibrosis" to push back on the naivete.

In collecting the above silliness, I found these as well:

Because you see, children dying of hunger (according to this UN information, it's 60% ~ double the meme's 1/3) would have a chance to LIVE with McDonald's and grocery store food and medicines. Our kids with cystic fibrosis LIVE with fat and salt and calories and medication. Those with health problems and the dedicated doctors who treat us and our children know exactly what medicines and nutrition do and don't do.  How dare they assume doctors don't know or don't care? We are neither asleep nor uninformed - both of which I've been accused, for purchasing large french fries and allowing antibiotics. Those things are good for folks with CF. Good! And there is a reason that every fever or cough does not send 21st century parents into scarlet fever or whooping cough panic. Killing our children? Mass destruction? According to this study, obesity-related deaths topped 300,000 in 2011; HIV/AIDS killed 1.7 million; and malaria killed 655,000 (uncertain up to 900,000). So that false McD's meme merely feeds people's snobbishness and nutrition devotion that rivals any religion.

Yes, some doctors have lost their humanity and are only interested in expensive band aids for trusting patients.  Yes, eating chemicals all day, every day might result in health problems. And yes, memes are like bumper stickers: meant for a shock or a laugh or a reminder. So I will continue to type my little phrase as a shocking reminder that not all sickness can be cured with organic fruits and vegetables.  Not cystic fibrosis.

So glad to live in America, with plenty of food and medicine,
Allison


P.S. ~ I do believe in lots of unprocessed food, making my own flour, peanut butter, mayo, soups, veggie shakes, etc..  But we also have a limited budget and I find myself defending "the other side" after floods of unwanted advice and chastisement... 

{PHFR}

{PRETTY}

I love my table, mostly in white, to celebrate the election of Pope Francis! The bits of red are for the cardinals we prayed for.

{HAPPY}

She doesn't look very happy; it's me that's happy because she'd been playing by herself for a while.

{FUNNY}

So I take out an egg to fry for myself and notice it's smiling at me. Who does this? Do I not provide enough art supplies? You know I couldn't crack it. It's still in the frig . . .

{REAL}

I thought about cropping out the mess behind her, but it's Real, baby.

Like Mother, Like Daughter has many more friends to visit to brighten up your Thursday!

Love,

Allison

St. Patrick's Day Poetry

Reverie. By A. Marjorie Robinson



Any Woman

I am the pillars of the house;
The keystone of the arch am I.
Take me away, and roof and wall
Would fall to ruin utterly.

I am the fire upon the hearth,
I am the light of the good sun,
I am the heat that warms the earth,
Which else were colder than a stone.

At me the children warm their hands;
I am their light of love alive.
Without me cold the hearthstone stands,
Nor could the precious children thrive.

I am the twist that holds together
The children in its sacred ring,
Their knot of love, from whose close tether
No lost child goes a-wandering.

I am the house from floor to roof,
I deck the walls, the board I spread;
I spin the curtains, warp and woof,
And shake the down to be their bed.

I am their wall against all danger,
Their door against the wind and snow,
Thou Whom a woman laid in a manger,
Take me not till the children grow!

This favorite poem was written by Irishwoman Katharine Tynan (1861-1931),who, even before the likes of Steinem and Friedan set her free and unburied her, seems to be neither handicapped by her sex nor denigrated by her work at home. She seems to recognize and revel in her power, responsibility, and love.

The lady painted in Reverie (by an Irishwoman, of course, for this is St. Patrick's Day!) reminds me of my Irish mother (Monica Grace Maguire).

My father is Tom Sherlock ~ half Irish, half Italian (Gaelic and Garlic, so to speak!)

Both of these selections were chosen from this book of Irish art and poetry, a gift from Ken and a treasure for the senses.

When we visited Ireland many years ago as volunteer missionaries for the Assemblies of God (Because, you know, Ireland doesn't know about Jesus. Sheesh.), we spent several hours organizing the Bible college's library, surreptitiously reading the good saint's words (Like our children do now when they're supposed to be cleaning their rooms.). We thought that he might be saved (!). He and his words came back to us ten years later as we studied Catholicism.

Saint Patrick, patron saint of Ireland, and caller-home to the Church for Ken and me,  pray for us this day, especially our new Pope Francis and all the bishops.

With love and thanks,
Allison

Wrong with Me

I whined at my husband yesterday, asking him, "What's wrong with me?" He hesitated, "Can you rephrase that, please?" So I said it louder. Apparently, that wasn't what he meant because there was a longer hesitation until he said evenly, "How about no nap for the little ones so we can put them to bed earlier, drink a pot of tea, and you can tell me what's going on. I'll be home soon." Yes, I said this on the telephone while he was at work.

See, the past few weeks have handed out some tragedies: two little boys and a young mother, all with CF, passed away, and our beloved Holy Father has resigned, leaving the seat of Peter empty. Other ladies I know are typing out expressive, passionate posts of drama and beauty and anger and fear and I just feel . . . quiet. A general melancholy, like I have no energy. "Do you think I'm cold-hearted?" I'm pretty sure I saw the corner of his mouth twitch, suppressing a smile, but Ken assured me that I was not; indeed, that nothing was wrong with me. "You don't have CF shock anymore. You have more of a tough sadness; not that you don't feel, but that you don't fall apart easily."

Well, that was a thoughtful explanation and all, but in the wee quiet hours with Addie, I wondered why. How did I get to be this way?

When Rees was first diagnosed, we had just moved 5000 miles away from the east coast: I was all alone, with no family and only a few new friends. There was no one to cry to or yell at or study with; no one to help with clapping or medications or nebulizers (There were two couples that were priceless angels for us during hospitalizations, thanks be to God and all the saints.).

Also, we were part of a church denomination that believed in divine health, so any inklings of doubt or fright or weakness were shushed. Don't speak it, they pronounced. The slightest shimmer of a tear was waved away. You must verbally claim Rees' healing, they commanded. This sort offers help by coming over and taking hold of the child and parents, praying with much shaking and shouting and demanding of disease demons to be cast into the pit of hell. Even in the solitude of our home I was terrified to let any negative emotions spill out, for fear that God would know how small my faith was, thus thwarting a healing. I didn't vent much to Ken for the same reason (I only recall two times in 9 years.). So I kept steeled and quiet and wondered what was wrong with me.

When Rees was around two years old, I happened upon some books written by a mother who lost her children to CF in the 70s, Turn it into Glory and Following Joey Home; I read them over and over, stifling sobs and physical sickness. Ken wondered why I would read such things and I remember telling him, "I have to. That's it."  The author, Meg Woodson, was the only CF Mama connection I had, as we would not have a home computer for years still, and Facebook groups hadn't been invented yet. So I kept sad and quiet and wondered what was wrong with me.

I think that being solitary and overwhelmed with a scary diagnosis involving extra work and hospitalizations; a false gospel turning us against each other, our own selves, and God; and immersing myself in Meg's aching books is how I got to be this way. What's wrong with me, is that sadness doesn't shock me because it's deep inside me and always present.

I write this post for three reasons: (1) catharsis, (2) solidarity with similar others, and (3) understanding for friends of similar others (Go easy; they're probably not cold-hearted, either.).

I'm so terribly sad for the sufferings of cystic fibrosis and the suffering of the loved ones left behind and I will miss my Church Papa very much.  This thoughtful, well-footnoted article explains the Church's teachings on redemptive suffering, which brought me back from the theological cliffs of despair; a lively Facebook group of CF Mamas offers plenty of tears, laughter, and understanding to make up for all the lonely years; and smart, loyal, loving friends walking beside me on our journey ~ these are good gifts. Praiseworthy gifts.

What's wrong with me? Nothing that the Communion of Saints can't help. And a really nice husband.

Can I get an Amen?
Love,
Allison

Back with Pretty, Funny, Happy, Real

It has been many months since I've contributed to {PHFR} but there is no tragic reason for my absence, save a dead camera battery that I tucked into my tote bag for close keeping, planning on remembering and repurchasing. Which I promptly forgot about every single time I headed out to run errands. Which my exasperated husband finally retrieved one morning and came home with its replacement the very same day. Which I'm reaping the benefits of this very afternoon. I submit:

{Pretty}

This late in February, the sun can peek through the highest branches and actually shine into our yard!

{Happy}

A girl and her peanut butter cup, it's a beautiful thing!



{Funny}

John's geography book held her interest for quite a while (enough  for me to make  cornbread anyway).



{Real}

Yes, that's my son. On a horse. About to gallop out and rope a cow.  (Hail  Mary, full of grace...)



See Our Mother's Daughters for more {PHFR} and maybe make a new friend!
Love,
Allison