"God loves ME more!"

[chaotic life]

My 10 year old son died of CF five weeks ago. I actually walked away from a friendship after he came home via adoption because the friend had markers for CF and her fifth child was extremely symptomatic but said friend was thrilled her toddler was so "tiny" and refused to EVER take her to the doctor, despite her foul poops and near constant respiratory infections. I flat-out told her the child needed tested and then had to assume the chances said child was a CFer was extremely high and keep my son away from them (CFers are supposed to never be closer than 4 feet from each other as they will share bacteria that they culture from their lungs between each other.)

No idea what she's talking about that she carries a severe mutation for CF and he carries a mild mutation for CF. I think what she means is that she carries one of the six most common mutations and he carries a lesser mutation. However, the presentation and life expectancy is NO DIFFERENT with that combination than a classic DDF508 such as my son, except DDs tend to have more severe GI issues than other mutation CFers. There are 1600 KNOWN mutation combinations for CF at this point. They are ALL deadly.

I despise people who so cavalier don't take precautions about having CF children. Life is torture as a CFer. Rare is the CF adult patient who thinks there's anything ethical about intentionally allowing a child with CF to enter this world.

[chaotic life]

Um.....she did NOT have a late term miscarriage. She had a 12 week 6 day miscarriage, which is just on the cusp between first and second trimester. My perinatalogist was barely counting my 13 week 5 day miscarriage as second trimester. How the HECK did she know it was a boy? There's no external genetalia at that point, and if she had a burial, pathology is not terribly likely. Maybe she had the placenta biopsied but my guess is that she totally guessed the gender.

Seriously, a funeral and a graavesite for a pregnancy that ended at 12 weeks??? That's insanity.

[Witsec7]

Um.....she did NOT have a late term miscarriage. She had a 12 week 6 day miscarriage, which is just on the cusp between first and second trimester. My perinatalogist was barely counting my 13 week 5 day miscarriage as second trimester. How the HECK did she know it was a boy? There's no external genetalia at that point, and if she had a burial, pathology is not terribly likely. Maybe she had the placenta biopsied but my guess is that she totally guessed the gender.

Seriously, a funeral and a graavesite for a pregnancy that ended at 12 weeks??? That's insanity.

She also had a requiem mass. My RCC family (extended) only had private graveside services for early losses during pregnancy. These were attended by a priest and parents. Late term losses were all open casket, no mass, and only a rosary said one night of the viewing. The viewings were typically 3 to 4 days.

[longskirtlotsakids]

That pantry is enough to give me an anxiety attack. Damn, no kid should have to live like that.

Um, dang. My pantry looks like that except with a few cans.

IF that is the only food in the house, yes, she needs to get her butt to a food pantry or food stamp office pronto.

We are eating very well though, thanks to a garden and last years pics and a cow in the freezer. In winter, my pantry will have a lot more cans and look less like this lady's I think.

Also- the whole suffering thing- it was kind of burned into me as a Catholic (Irish Catholic, the most pious and bitchy kind) was that as long as you were good and pious and holy only good things would happen to you. If anything bad happened, it was because God punished you.

WHen my dog died, it was a clusterfuck of guilt, fear and hate. When my kid's dog died, it was a beautiful (but full of sad and grief) tale of his life and how much of a part of the family he was, and that ALL DOGS DIE, and it wasn't THEIR FAULT.

Thinking that my dog died because of me was a hell of a weight to carry for a 8 year old. I can see why, if you cling to this shit as a grown-up, that you become nuts.

[MrsKay]

We don't have food stamps, but we do have other options.

1. Teh ebil WELFARE!!!1!

2. Food banks - you don't get much, and around here, can only go once every month or two (depending on the food bank itself), but it's better than nothing.

3. Salvation Army - in many cities, they have some kind of soup kitchen. Some also have morning gatherings, where the homeless and the impoverished can gather for coffee, tea, muffins, etc., and often take away a bag of day-old bread, rolls or donuts. They also have a fund to cover hydro bills and rent, so that families aren't homeless and/or freezing; it's not guaranteed, since there has to be money in the pot, but I believe anyone qualifies at least once for some help there.

4. CHURCH - DUH! Growing up, we were helped out very generously by more than one church. It didn't matter if we went there or not. More wealthy members of the parish often club together to pay for emergencies such as food and utilities, and some churches have a fund for that. After we were baptized Mormon, we obviously went to Mormon church. It was considered a Godly mission for young men, usually missionaries but not always, to do things like plow up land for a family to plant a garden, or do home repairs to improve the quality of life for people. We were very obviously a poor family, so we were always invited to join whatever bishop was there, along with whoever was putting in overtime, to stay for lunch after church. They helped with groceries as well. A lot of churches have a setup where people can walk in, take some food (usually bread and canned goods), toiletries, etc., from a room set up for that reason. No questions asked, no judgement passed.

Honestly, I have to say, that's one thing that I miss when it comes to being a Christian. Being Pagan, there's not a big crowd of similar people around here to support each other like church "families" do.

Anyhow, it can be hard to suck it up and lose some pride, but there ARE things to help people out here, if they ask.

Edit to add info.

[Sumeri]

Um.....she did NOT have a late term miscarriage. She had a 12 week 6 day miscarriage, which is just on the cusp between first and second trimester. My perinatalogist was barely counting my 13 week 5 day miscarriage as second trimester. How the HECK did she know it was a boy? There's no external genetalia at that point, and if she had a burial, pathology is not terribly likely. Maybe she had the placenta biopsied but my guess is that she totally guessed the gender.

Oh, no no no! She explains this (I spent waaay too much time reading her blog last night) in one of her "pro-life" postings. If you search the categories on the right side of her page and go to pro-life, somewhere mixed in with the many descriptions of rallies that she's attended is the story of how she could totally see her son's penis. The size of a grain of rice!

I grew up hungry, with a crazy mother who would not under any circumstances accept government assistance. It's no way for a child to be raised. To keep having babies you can't afford to feed - AND with probable health problems - is unconscionable.

[LynnJ0516]

So many of her posts are baffling (she prayed away a tornado, people, and the rosary saved her house from getting hit by a tree), but here's a delightful one summing up her thoughts on President Obama:

Well least she's praying for Obama's "Salvation" instead of his death like someone we know...cough Zsu's headship...cough :roll:

[valsa]

I despise people who so cavalier don't take precautions about having CF children. Life is torture as a CFer. Rare is the CF adult patient who thinks there's anything ethical about intentionally allowing a child with CF to enter this world.

Unfortunately, this "woman" (I loathe to even call her that) thinks suffering is a good thing- a mark of divine favor. She probably doesn't have a problem with gambling with her children's lives because if any of them do have CF, to her that just means God loves them more.

[singsingsing]

I need to stop reading her blog. I just came across another stunner:

On the way home from my son's First Communion, we passed a sign advertising a sermon at the Independent Baptist Church: "What Kind of Women Change the World?"

I got so sad.

There is only one woman who changed the world, Mary.

?!

I was trying to find the post where she laments her struggles with infertility. I couldn't find the particular post, but she brings it up fairly often - basically she thinks she bears the painful cross of infertility because there were 3 years between her third and fourth children.

[GiGi_41]

That Jesus! He's a car salesman, an interior decorator and now a personal trainer? He's going to get burned out, just wait.

Lol..no what's going to happen is, he'll get accused of inside trading, get sent to "camp" for a break and then he'll come back from camp ready to make is own TV show!

[Terrie]

My 10 year old son died of CF five weeks ago.

Chaotic life, I'm so sorry. And I'm sorry if this woman's selfishness has added to a tough time.

[Koala]

http://abigails-alcove.blogspot.ca/search/label/Miscarriage

I've got a shaky smile on my face in this picture while my hand is on his tiny coffin (only five inches long) because I was finally successful in my quest.

One of my thoughts during the Mass was "he's got a big boy funeral at last."

Post includes a pic of her with a giant smile on her face and her hand resting on a 5 inch "coffin". :shock:

(and I've had 2 miscarriages, so feel completely comfortable saying that this chic is completely off her rocker)

[chaotic life]

She would have to be absolutely heartless to not be bothered by the suffering CF bring to a child. Though, I did find her talking about CF and how she would pray the rosary over sick grandchildren.

Oh whatever! Praying the rosary is NOT going to help a child who coughs to hard they pop blood vessels in their eyeballs. It won't make it easier when the entire household has to revolve around 2+ hours of treatments every day just to keep the child breathing. It won't make it better when you sit in the hospital an average of 2 weeks per year with your sick child getting poked, proded and often facing intestinal surgeries while someone ELSE cares for your other children. She apparently struggled to find people willing to help out when her third child spent three weeks in the NICU (hope someone did test that child for CF because intestinal issues are common with CF). How does she think she can LIVE at the hospital and still find income and time for the rest of her family?

My DH had flexibility in his working because he is upper management. He could work from the hospital and I could stay home with the other children. Friends brought food to them and provided support for me. In fact, everytime my son went into the hospital, our close friends would put out the call and one particular friend would show up with wagons FULL of food for DH and our son. It's quite necessary with CF. We are the frequent flyers of Children's Hopsitals. We are the ones whom the nurses greet by NAME and comment on how sick you are based upon how altered you are from what they know your normal behavior is once you start to get better. We are the parents who congregate in the family lounge while Respiratory therapy is doing treatments because it's our rare break to run and feed ourselves and get a breath, when we then chat and commiserate, each of us praying that our child is not the sickest there. Our children are not allowed near each other, but we find each in the halls, in the cafeteria, wheveever we can find a break to just breath for a moment. Our other children are often left in the hands of others so we can care for that child.

I think she WANTS a chid with CF. She wants to suffer "for Christ" and I suspect she believes that CF would be the perfect suffering. It's suffering alright. What CFers endure breaks your heart. Even in death, another friend had to call Dh to warn him--even in death and dying there are things unique to the CF.....like the vile mucous they gurgle up as their lungs give up which you must continue to suction out without showing how much you want to vomit to your poor child who is suffering.

CF took over our entire family and lives. We felt one child was worth that and his siblings were honored to be a part of his life for the brief time we held him and loved him. This woman has absoutely NO concept of what CF is and what it is like to live with it. It would break her marriage, 75% of parents of CFers divorce because it's SOOO HARD to live with.

She's going to end up with CFers. Every child she concieves has a 25% chance of contracting it. It's only a matter of time before one of her children is born with this. It's just as likely she'll have multiple children with this, and by the time she truly understands what it means, the children will already exist even knowing she has to stop the insanity, she'll still be living with it.

I know a family that had eight children. Their eighth child was very sick and at age 4 was diagnosed with CF. It was then that the doctors tested all of the children. Half of their children had CF. They had NO idea. It wasn't in either of their families. None of the other children had been sick enough young enough to trip a suspicion in the medical community. It devestated the family. There was nothing left to do but live with it (and they DID stop having children despite being QF previously). Four childen with CF was horrifying for the parents, for the children, for the other four who will live long lives but see half of their siblings die.

The average life expectancy of a CFer in the US is NOT 36. That's a false number deliberately generated by the CFF to encourage ressarch fund raising. The average life expectancy of a CFer in Canada or England is in the mid-30s (and apparently she is in W.VA not Canada). There's a specific reason why their life expectancies are higher. In the US, only half of our CFers will live past their 18th birthday. The other half will die before it. And since nutrition and weight is THE number one factor in determining life expectancy, someone wo thinks its okay to make her children suffer and go hungry is NOT gonig to increase any child's life expectancy by being deligient on their weight patterns.

Much as I think SHE would deserve the disaster SHE is courting deliberately, no child deserves what she IS going to do to them.

[emeraldskull]

I need to stop reading her blog. I just came across another stunner:

?!

Whaaaaaa...... there are just no words.

So unless you birth the son of God, as a woman you leave absolutely no effect on the world? Once again, women are relegated to homekeepers and babymakers, not remotely the ability to do any changing of the world I guess.

[slickcat79]

It's really sad when you pass a Baptist church and get depressed about their overabundance of feminism :?

[sparkles]

The barren cupboard post screams "SEND ME MONEY!" And I'll be people do.

Love the righteous indignation about having to control your children in the courthouse. No lady, the court should not have to provide a puppy and a cup of coffee (WTF?) to your child because you're a Beloved Daughter of Mary and can't be bothered to respect other people.

The more I learn about the fundie-verse (damn you FJ!) the more I feel like I'm danger of having my head explode. KMN.

[She Who Laughs]

Love the righteous indignation about having to control your children in the courthouse. No lady, the court should not have to provide a puppy and a cup of coffee (WTF?) to your child because you're a Beloved Daughter of Mary and can't be bothered to respect other people..

Um, that sign would be a light-hearted way to get people to watch their children. I have seen variations of that sign in many businesses. One popular variation is that unattended children would be given a free kitten and a mountain dew. Obviously you don't get the joke that the court wouldn't actually give the child a puppy and a cup of coffee, it would just be a less rude and less in your face way to encourage parents to take care of their children.

[sparkles]

Yeah, I definitely missed the "joke." And I would suspect that most people who can't control their kids in public would too. You know, the people who let their kids sit on moving conveyor belts, grab and eat food off grocery store shelves (that the parents don't pay for), pull merchandise onto the floor, and scream through midnight showings of movies like "The Girl With the Dragon Tattoo..." These are not people who "get" subtlety or humor. So I have no problem with being blunt in those situations. And I honestly didn't find that sign rude at all.

[Cran]

Concerning her and her husband being Carmelites: Many orders have associations open to members in the world and those can be married and have the oversight over their own earnings. They are probably what is known as a "Secular Carmelite". Personally, I think this is a contradictio in terminis, Carmelites being a religious order and therefore never lay people, but as the term is used...

http://www.helpfellowship.org/secular_c ... e_info.htm

And within Catholic teaching, she would be allowed to have an amnio (but of course no abortion if it turned out the child carried CF) and is, for a good reason, allowed to use NFP, and her situation is definitely a good reason! I agree with previous posters, she wants to be a martyr and uses Christianity as an excuse for her superiority complex.

[Witsec7]

Concerning her and her husband being Carmelites: Many orders have associations open to members in the world and those can be married and have the oversight over their own earnings. They are probably what is known as a "Secular Carmelite". Personally, I think this is a contradictio in terminis, Carmelites being a religious order and therefore never lay people, but as the term is used...

http://www.helpfellowship.org/secular_c ... e_info.htm

And within Catholic teaching, she would be allowed to have an amnio (but of course no abortion if it turned out the child carried CF) and is, for a good reason, allowed to use NFP, and her situation is definitely a good reason! I agree with previous posters, she wants to be a martyr and uses Christianity as an excuse for her superiority complex.

I truly questioned her being a tertiary Carmelite earlier in the thread, she has a Marian obsession, just like my mother the convert had.

[teddybear]

Sigh, poor dear doesn't seem quite all there. Although, I was tempted to comment on one of her posts. She had some pictures from the Franciscan Monastery in Washington, DC and made statements about how holy a place it was, yada-yada-yada. I almost asked her if she knew the place was full of queers? LOL I used to be a candidate at that monastery and lived there several months. Several of the friars were raging queens. LOL But I controlled myself, the poor girl would have had a stroke or something.

As for being a tertiary. I used to be one myself, only with the Franciscans instead of the Carmelites. Seems like she has some silly ideas about what it means to be a Third Order Member. For one thing, they are no longer called "tertiary's". Now the proper name is Secular Carmelite. Meaning they are not religious, but a lay person who is affiliated with the Order. It is a whole different vocation.

[Witsec7]

Sigh, poor dear doesn't seem quite all there. Although, I was tempted to comment on one of her posts. She had some pictures from the Franciscan Monastery in Washington, DC and made statements about how holy a place it was, yada-yada-yada. I almost asked her if she knew the place was full of queers? LOL I used to be a candidate at that monastery and lived there several months. Several of the friars were raging queens. LOL But I controlled myself, the poor girl would have had a stroke or something.

As for being a tertiary. I used to be one myself, only with the Franciscans instead of the Carmelites. Seems like she has some silly ideas about what it means to be a Third Order Member. For one thing, they are no longer called "tertiary's". Now the proper name is Secular Carmelite. Meaning they are not religious, but a lay person who is affiliated with the Order. It is a whole different vocation.

When I was growing up women became secular Carmelites after widowhood, when children were grown, or 'spinsters' entered the order as seculars. As I said earlier I think she went to a novena and wears an Our Lady of Mount Carmel scapular as an excuse for their intentional poverty. Argh, and don't get me started about the Marian altar, I had to grow up with that crap.

TBS this woman can afford fencing lessons for herself but not food for her kids. That is what pisses me off. Goddess forbid she could work part time with a law firm perhaps doing research on a telecommute basis and actually assist in feeding her family.

TY to Chaotic regarding the CF issues.

[Peas n carrots]

After reading this I think she should be friends with Franki Grainger

That gift of knowing "mortal sin" saved me. Because if I hadn't gone to church on that terrible Sunday after the miscarriage. That Sunday when I was so mad at God, so mad at all the pregnant mothers at the swimming pool who blithely commented about "life with this baby" without realizing that in a second this whole baby gift can suddenly disappear while a dead body still floats in your uterus, and so overwhelmed with the thought of returning to the church its happy stain-glass windows of Mary cradling the newborn Jesus, I don't know when I would have ever returned. It could have been a week. But it probably would have been much, much longer.

[Koala]

After reading this I think she should be friends with Franki Grainger

So agree. That's the first person I thought of when I read this.

[Witsec7]

So agree. That's the first person I thought of when I read this.

Ditto. The 'good' thing about Frankie is she had no living children.