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!


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!

Stopping by Hallways on a Messy Afternoon

An actual picture from Sunday morning

Whose shoes these are I think I know.
Their minds are lost in childhood though;
They will not hear me calling names
Or care that I pick up and go.

My little dogs must think it queer
To see me stand and wipe a tear
Between the door and dirty hall
This messy season of the year.

They frown and give their heads a shake
To ask if there is some mistake.
The only other sound's the din
That happy children playing make.

This house is cluttered, small and sweet
But I have promises to keep ~
And miles to love before I sleep
And miles to love before I sleep.

(My apologies and affection to Robert Frost!)
Love, Allison