This is what's going on with CF and health care and insurance brokers.
Thank God for this good friend.
Where are these professional people with an excellent work ethic? People that some think I'm wasting my life by not being? I am not impressed. Get to work, working ladies (yes, all those I'm dealing with are women).
I've got more writing and calling to do today. So sad and angry.
Think of us please.
Love, A
Showing posts with label Friends. Show all posts
Showing posts with label Friends. Show all posts
Friday, January 24, 2014
Sunday, March 3, 2013
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
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
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.
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 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
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
Tuesday, April 10, 2012
A Few Good Men
Several months back, during a stretch of 20 degrees below zero temperatures, we enjoyed vehicle troubles. Not simply strange sounds, but a choking, jerking death that rendered us immovable at an intersection. It ended up being something called the pump-hose-gasket-register-charge-thingy. It cost a lot to fix. Anyway. John was driving, practicing his standard transmission skills, and I was practicing my try not to use the Lord's Name in vain skills when the untimely demise occurred. And men stopped to help.
Rough men with greasy coats, hat hair, and cigarette smells. Also with concerned eyes and laughing jokes as a handful of them pushed our old car to a safer spot. Want me to have a look under the hood? Need a jump? Got someone coming? Take care.
Then there was last week : struggling through the icy McDonald's parking lot with Addie bumping in her car seat carrier and the three little boys orbiting around me. I may have been wearing cute, impractical shoes. My brain synapses were firing, I'm a rockstar ; I'm a rockstar ; I'm a rockstar. We finally stepped onto the sidewalk where I saw an amused-looking, 20-something man awaiting our arrival, holding open the two doors. Oh, thank you so much, I tried not to overly gush, hurry boys, he's got the doors for us! The man smiled as they tumbled by, revealing a complete lack of front teeth. He was, like our vehicle angels, also dressed in dirty work clothes. Take care.
And yesterday. Yesterday found us deja-vuing : bumping baby carrier, swirling small boys, icy parking lot. I did wear practical clogs, though. We were heading into a hall to collect Clare and John when a strapping, handsome teenaged boy overtook us with his long strides. He marched up the stairs, entered the building directly ahead of us -- and let the door slam with nary a backward glance. I could see his hip, brand name jacket tag ; his hip, brand name boots ; and his hip, perfect hair. Boyfriend material. Probably college-bound. Jerk.
I do not care what my boys have (degree, job, teeth) ; I do care what they are (good, smiling gentlemen). I do care that my girls marry good men, regardless of the kind of cars or clothes or jobs they have.
(But I do hope they keep all their teeth.)
Smiling,
Allison
P.S. ~ For clarity. I am not labelling all men. Just the shock of our own happenings. Amen!
Rough men with greasy coats, hat hair, and cigarette smells. Also with concerned eyes and laughing jokes as a handful of them pushed our old car to a safer spot. Want me to have a look under the hood? Need a jump? Got someone coming? Take care.
Then there was last week : struggling through the icy McDonald's parking lot with Addie bumping in her car seat carrier and the three little boys orbiting around me. I may have been wearing cute, impractical shoes. My brain synapses were firing, I'm a rockstar ; I'm a rockstar ; I'm a rockstar. We finally stepped onto the sidewalk where I saw an amused-looking, 20-something man awaiting our arrival, holding open the two doors. Oh, thank you so much, I tried not to overly gush, hurry boys, he's got the doors for us! The man smiled as they tumbled by, revealing a complete lack of front teeth. He was, like our vehicle angels, also dressed in dirty work clothes. Take care.
And yesterday. Yesterday found us deja-vuing : bumping baby carrier, swirling small boys, icy parking lot. I did wear practical clogs, though. We were heading into a hall to collect Clare and John when a strapping, handsome teenaged boy overtook us with his long strides. He marched up the stairs, entered the building directly ahead of us -- and let the door slam with nary a backward glance. I could see his hip, brand name jacket tag ; his hip, brand name boots ; and his hip, perfect hair. Boyfriend material. Probably college-bound. Jerk.
I do not care what my boys have (degree, job, teeth) ; I do care what they are (good, smiling gentlemen). I do care that my girls marry good men, regardless of the kind of cars or clothes or jobs they have.
(But I do hope they keep all their teeth.)
Smiling,
Allison
P.S. ~ For clarity. I am not labelling all men. Just the shock of our own happenings. Amen!
Sunday, March 18, 2012
HILARIOUS ~ Providing boisterous merriment
The Lord gives and the Lord takes away ; blessed be the name of the Lord (Job 1:21b).
Last weekend was a Lord gives time, as we were flooded with gifts. It was hilarious. There were baby showers with lovely ladies and a truckload of groceries and household items from anonymous angels.
Adah Marie is definitely the best-dressed member of the family now (Sorry, Ken.) ~ so many super clothes for her! And special extras like a pretty pink walker, a cute carrier pouch, and a green-eyed rocking wooden moose (Although at this point, the kids argue over it all : I'm choosing her outfit ; it's my turn to ride the moose ; Joseph's stuck in the walker again . . . ). I was surrounded by friends and tea and laughter and snacks and babies.
The pickup truck of goods was a gigantic surprise, turning my table into a towering Christmas tree of groceries and supplies. Were these saints wise to our calamitous car problems and chose to bless us? Did the Holy Spirit whisper our name? Do you know how hilarious it is to have frivolities (for us) like fabric softener, boxed tissues, sausage, and goldfish crackers?
Sometimes, people who have heard No from God have a more difficult time saying thank you to Him when there's a Yes. We tend to say (or think) things like, Don't be hyper-spiritual ; this isn't from God, it's from whomever. But people are the hands of God. That's what the Body of Christ, the Bride of Christ, is all about ~ called to do good works (2Timothy 3:17 and Philippians 2: 3-4). It's tangled up together. Just as the earth is a living organism, so is the Church. Now to these known and unknown loves :
Thanks to you!
Thanks to God!
Thanks for being our brothers and sisters in Christ!
Thanks for goldfish crackers and tissues and pink stuff!
We are learning. We are thoughtful. We are flustered. We are grateful.
It is hilarious!
Boisterously merry,
Allison
Last weekend was a Lord gives time, as we were flooded with gifts. It was hilarious. There were baby showers with lovely ladies and a truckload of groceries and household items from anonymous angels.
Adah Marie is definitely the best-dressed member of the family now (Sorry, Ken.) ~ so many super clothes for her! And special extras like a pretty pink walker, a cute carrier pouch, and a green-eyed rocking wooden moose (Although at this point, the kids argue over it all : I'm choosing her outfit ; it's my turn to ride the moose ; Joseph's stuck in the walker again . . . ). I was surrounded by friends and tea and laughter and snacks and babies.
The pickup truck of goods was a gigantic surprise, turning my table into a towering Christmas tree of groceries and supplies. Were these saints wise to our calamitous car problems and chose to bless us? Did the Holy Spirit whisper our name? Do you know how hilarious it is to have frivolities (for us) like fabric softener, boxed tissues, sausage, and goldfish crackers?
Sometimes, people who have heard No from God have a more difficult time saying thank you to Him when there's a Yes. We tend to say (or think) things like, Don't be hyper-spiritual ; this isn't from God, it's from whomever. But people are the hands of God. That's what the Body of Christ, the Bride of Christ, is all about ~ called to do good works (2Timothy 3:17 and Philippians 2: 3-4). It's tangled up together. Just as the earth is a living organism, so is the Church. Now to these known and unknown loves :
Thanks to you!
Thanks to God!
Thanks for being our brothers and sisters in Christ!
Thanks for goldfish crackers and tissues and pink stuff!
We are learning. We are thoughtful. We are flustered. We are grateful.
It is hilarious!
Boisterously merry,
Allison
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