Monday, July 5, 2021

Corona Thoughts

 

This whole Covid thing is nothing new to us. Back in 1995, when our son was diagnosed with CF and began needing two-week hospitalizations many times a year, the CF kids would get together in the hospital’s rec room, comparing IV sites, meds, and trash-talking the respiratory therapists and nurses. They were full of antibiotics, antifungals, mucolytics, and who knows what else, so it was expected that no bugs could pass between them. Then the doctors told us they had to wear masks while in there, so they decorated theirs with drawings, band names, and salty sayings. Then the doctors told us they couldn’t be in the same room together and would have to sign up for hour-long slots by themselves, so they constructed mailboxes outside their doors and slipped notes in as they moved through hallways. Then the doctors told us they could not leave their rooms, so they managed exercise while confined, learned to FaceTime, and finagled permission to walk around the empty hallways alone late at night.

Somewhere in the middle of these years (early 2000’s), every hospital staff person who entered a patient’s room began donning gowns, gloves, and masks – a new set for every room. This was not so that they wouldn’t catch what the patient had, but to keep bugs away from their fragile lungs just in case they were carrying something.

Our Great Strides fundraising walk used to be a fair-like festival of food, rides, games, swims, and hikes. It was summer’s celebratory highlight to get so many CF families and friends, plus doctors and nurses all together -- people walking the same walk. Then the doctors told us about the new, six feet apart rule in order to keep CF people from sharing bugs, so organizers handed out matching T-shirts to CFers, to identify from whom to stay six feet away, which put a damper on the day.

While we reviled every new restriction and were dismayed at the social distancing and considered taking our chances and defying the new rules, we never thought the doctors and scientists lied. We understood that they were smart, driven, humanitarian scientists working to understand, solve, and save lives. Their inquiry, experiments, research, and recommendations (Remember learning about the scientific method in 6th grade science class?) are lifesaving. They published their findings, and hospital authorities on whose shoulders rest the heavy weight of people’s health responded by amending rules. And they were right. The median life expectancy for people with CF has doubled in these past 27 years.

The experimental drugs are exciting. For decades, I have signed up the children for studies, hoping they would be in the drug group instead of the placebo group. Now they answer for themselves, and they’ve always signed their names to participate. They are both taking brand new formulations: our younger child just beginning a drug that her older brother guinea-pigged several years ago! They are meticulously monitored so if their bodies react weirdly, the doctors run tests to ascertain the reason.  I absolutely trust the procedure from petri dish to rodents to primates to humans.

The world at large has been living with Corona virus for less than two years, but we have lived the respiratory virus story for close to thirty years. Scientists figure stuff out, they publish information (which sometimes backtracks on previous stuff), and civil authorities make the best decisions they can for public health, like no smoking indoors, mandatory seatbelts, and speed limits, to name a few. Masks and social distancing and protecting other people’s lungs have been a part of our lives for a long time. Of course they work. When people keep their breath and body to themselves in public places with scores of people, the airborne viral load lessens. Of course our immune systems are amazing; smart scientists figured out how it operates and now we can work with it by vaccinations.

We are aggrieved not so much over viruses or public mitigation methods but over the assumption that we are fearful, uninformed sheep. Because along with a decent understanding of math, medicine, civics, and Christianity; we have actual -- not internet -- doctors who have earned our trust over decades of care and whose advice we wisely follow. If a manager mandates masking to shop in his store, we can handle 30 minutes; it’s not un-American.  If  our pastor says to mask for services with plenty of people, we can handle an hour; it’s not sin. We are pleased to be vaccinated and be part of herd immunity so this virus – or any virus or bacteria – can’t make inroads into our community. Now the restrictions are lifting as the vaccinations are available and our year of gentle masking is over. Our priest explained that we may find out over the months and years to come that it did no good; but in the meantime, this is how we're handling it. 

It was not that hard, it blessed others, and we followed Christ’s admonition to be good neighbors and our brothers' keepers.



 

Friday, December 8, 2017

Welcome, Vest

Our pulmonologist of 23 years now has a partner. Another doctor working in the CF clinic, listening to lungs, prescribing medications, getting throat cultures, drawing pictures on the table . . . and encouraging me to get Addie going with a vest. Yes indeed. He told me that he wanted her using one. Dr. Roberts doesn't care for them, I said. Yes, but I do, he said. My heart started pounding, and friends ~ I started to cry.
She looks confident

 I don't cry. Well, only over movies and books, but not health stuff; I've gotten cold over the years. I was so embarrassed at my reaction and I could not process everything right there with him looking at me all concerned. This doc doesn't know our family like Dr. Roberts and probably thought I was weak-willed but I could not stop the tears from rolling. He toned it down to, Think about getting one to have in your den for when you can't clap her.

As we were schlepping through the tight hallway, on our way out with 85 pounds of drink and vitamin samples, this new doctor came out of the control room and stopped us. He looked me straight in the eye and gently told me that his vest recommendation was not due to her sounding poorly (Her lungs were clear) or raised eyebrows over my short-ish clapping sessions (10-20 minutes twice a day). He told me that it can clap all lobes at once and it's just a good thing to have. I nodded and told him thanks, sorry for crying, I don't really know why, I'll think about it all later when I'm alone and quiet.

And I did. 

* I realized that I did not want to disrespect our beloved doctor, who is still not a vest fan. 

* I realized that I did not want to admit that My Way could use some help from a machine.

* I realized that yes, I clapped Rees for 8 years until he could use a hand-held device, but by the time he was 8, I only had 6 year old John and 2 year old Clare. There's a lot more of us now. 

Rees is doing great; this is at Clare's confirmation.
* I realized that, while I still hold that the vest does not foster independence for the person with CF (after all, they are tethered to a machine), but rather fosters ease for the parents, that that ease for me is OK. 

So, my dear CF Mamas, Addie has a Hill-Rom vest in pink camouflage, decorated with camping stickers. 

Yup, I agreed 2 weeks ago. It arrived last weekend and a rep came over to show us how to use it.

I keep a tight rein on my nerves and always ask her if she wants vest or clapping and when she says clapping (usually when she's tired and wants to fall asleep with me on the sofa!), that's what we do. This old Mom has learned a new trick. More change and stretching and tears, even with me; darn it. 

I hope Dr. Roberts isn't mad at me.
Halloween, just because

   P.S. ~ Here's what it is for non-CF families!

Friday, April 7, 2017

Blessed Because He is With Us

Snow girl
Addie had another clean culture last month: normal respiratory flora and normal vitamin levels. We're all happy she's had such good luck. And I do call it luck, not blessings or hard work paying off.  I don't know why saying "We're blessed" bugs me so much.  I know that all good things come from God. I also know that some Christians have terrible problems. The ending of Hebrews 11 (verses 32-40) tells of those who had miracle lives and those who "did not receive what was promised." After all, Christ Himself said that the heavenly Father, "makes his sun rise on the bad and the good, and causes the rain to fall on the just and the unjust." God does not bless Addie more than Rees (who has had more trouble with his health) and I do not work harder at taking care of her than I did Rees.

Our chapel
I've knelt in our hospital's chapel after a CF clinic visit with a kid and given thanks together; and I've knelt in there alone, having signed over a kid upstairs for an admission. Tears both times, the crucifix and tabernacle before me a physical reminder of life's true love and pain.  I turn to God in good luck and in bad luck through this journey from womb to earth and beyond. We all get through on our own trajectory and Eternal Love surrounds us whatever the lab reports read. That surrounding by God is his blessing.

I don't think to be blessed by God means health and prosperity. I think it means that we are watched by our Creator throughout this valley of the shadow of death (And aren't we CF families living with a shadow of death?) where we fear no evil because he is there to comfort us. We are blessed, then. When the cultures come back badly, we are blessed; and when they come back clear, we are blessed. He is with us.


So serious
. I did a little digging on the word Blessed and found that it is used in the Scriptures several ways.

*To praise God: Bless the Lord oh my soul.

*As a desire for goodness: Blessed are you among women.

*For sanctification: He took bread and blessed it.

*As a gift: Children are a blessing.

I did not look these up to be an annoying know-it-all, though! I needed to make sense of things.  And my studies blessed me (haha, yes).

Cute purse, baby, large coffee.
A friend of mine lost her son last month and a friend of hers wrote about the question of blessings for some and not others (Why Us and Not Her?). We're all trying to make sense of things, aren't we? I wonder if I bristle at reports of health blessings because of the reminder that some are not blessed that way and the unfairness of it all exhausts me. It is still a good word, however, because it brings our focus back to God, so I need to not bristle (Help, Holy Spirit!).

The sun has returned to Alaska!
I do hope and pray for all of us in this fight, that we rest in the blessing of God's presence in good luck and in bad luck.

Love, Allison







Monday, January 2, 2017

Beginning the New Year

On our way in



Ian with his beginning pile
We spent the day on an easy hike in a place called Sun Valley. The temperature ranged from zero to five degrees, the sun was shining (but not hot at all!), and the sky was bright blue ~ my favorite looking day. I had a new day pack to try out (Thanks, Ken) and the boys had new fire starter metal thingies to try out (Thanks, Dad). After walking for a few hours, we arrived at a lake, dropped our backpacks, and gathered material for a fire: first moss, then twigs, sticks, branches, and finally logs. It took longer than I like to get it to catch with the scrapings, but it worked!

Success!


Hard to capture just how high he was.
Happy Joseph
 Not much feels as good as a fire in the woods when it's zero degrees! We kept them going for about an hour and had some snacks. Ian thought it would be a good idea to climb trees and question my mothering rules. Some of us (Clare and I, actually) stayed by the heat and toasted ourselves front to back. Luke, Joseph, and Addie took it upon themselves to rove about and pick up sticks to toss on the fire. Good job. It began to darken on the hike out and the temp dropped to a few degrees below zero but we felt good from the fire and food.

Facebook tells me that we hiked on New Year's Day last year as well. I guess it's a tradition now. Excellent. No phone service; no internet; no toys. Just us in Alaska. Perfect.


She walked the whole thing.
Then, just as we were settling down and getting cozy at home, I received a text from Rees: Hey Mom, do you, Clare, and Ian want to meet me at the theater to see Rogue 1? So I put my smoky-smelling hair into a bun (Hey, it's Alaska) and out we went again. What a perfect day. The only dark spot was missing John, but he told us that he's doing fine and enjoying Christmas and New Year's pretty well with USO organized field trips (Field trip isn't the correct term, but that's what it sounds like to me). So it's OK.


Big breaths into 2017 and love from the Howells.



P.S. ~ I feel that I should share what happened to a baby of ours. It took me a long time to write.



Thursday, December 29, 2016

A Familiar Sadness

Morningtime neb with the mouthpiece
Something happened last night that hasn't happened in many years: Addie fell asleep in my arms breathing TOBI and I was overwhelmed with sadness. I recognized it of course, but had not felt it for a long time. Watching her peaceful face covered in a plastic mask while smoky medication swirled around her stirred up an old panic of hopelessness. She was sleeping safely in my arms, but not really safe. She doesn't know.

With Rees, who is an adult, I fight fear (because I'm so happy he's OK but afraid of the years) and occasional anger (because I wish he would sleep more, exercise more, and do his flutter valve more!).

I have hardened myself over these 22 years and simply do not allow sadness to wash over me. I imagine I'm seen as cold by friends when I'm not as supportive in their sadnesses as I should be. I usually think of ways to be better afterward, when it's too late. I'm sorry about that. Love. Hardness. Sadness. Me.


Another night with the fish mask
Since TOBI is administered twice a day for 28 days, Ken has hooked her up many evenings and read books while she breathed it in. He also told me one night that he felt a long-buried sadness. I wonder if his sharing that made a tiny unconscious chink in my armor and my emotions grabbed the chance to flood my heart when she fell asleep on me. I know it's good to feel the feelings sometimes (I'm not that cold!).


So that's it, dear friends. This is just a sharing of Something That Happened to an old CF mom with another little one. We're in this together. We must allow the feelings, recognize them, own them -- then get up and grab a book or DVD for clapping and TOBI or make lunch before playing outside or get out a new puzzle to work on while in the hospital. We've got today to love and be loved!


Thursday, November 24, 2016

Dear Thanksgiving Moms

When you're shopping for Thanksgiving and see a lady with powdered potatoes and gravy packets, please don't roll your eyes and think she's doesn't know how to cook. She may be very tired from getting up in the wee hours to attach IV tubing to her kid's central line, waiting an hour while it runs, and flushing the line with saline and heparin. Then beginning again seven hours later. Then seven hours later.

When you see a lady with canned cranberry sauce and packaged rolls, please don't assume she doesn't appreciate real food. Her mind may be gripped with worry over her child's lack of appetite and digestion problems, charting every bite and potty visit. Or lack thereof.

When you see a lady with bakery pies and a tub of pumpkin ice cream, please don't imagine she doesn't know that homemade is cheaper. She may be putting it all on a credit card to have something for her family that doesn't require the time and attention she simply does not have.

She loves her family. She wants a decent Thanksgiving. She's worried and tired, though; and sometimes modern grocery conveniences and credit cards are precious. It's the best she can do this year.

Love, Allison

Monday, November 21, 2016

Swing dancing at the state fair



Rees and his partner are on the far right.

Recorded by my 9 year old.

Lots of fun!