"Open to life, even with [CF]" - Catholic mommy blog

[mockingbird]

I know there are some in our community who have personal experience with CF. Just FYI, this blog and the article about the family could be triggering.

This family's blog was mentioned on another forum... the poster mentioned they were a Catholic homeschooling family so my alarm bells went off. Then I went to the blog and saw that not only do they have a teen with CF, but they have a BABY with CF and five kids in between. B/c birth control is evil and they need to "remain open to life". This is basically what I see Abigail becoming if she ever actually has a kid with CF. :?

Here's the blog: northerncffamily.blogspot.ca/

They linked to an article which summarizes the family's story - I haven't read through most of the blog yet. It is called "Open to life, even with a 25 percent chance of cystic fibrosis" which basically tells you EVERYTHING you need to know.

lifesitenews.com/news/open-to-life-even-with-a-25-percent-chance-of-cystic-fibrosis

But in case you would like some quotes:

The family was originally Pentecostal and thought CF was from Satan and God would take it away.

When Rees’ healing did not occur, the parents were led to believe that something was wrong with their prayers, their faith, their worship, or even with their trust in God. The leaders of the sect convinced the distraught couple they must be harboring a “secret sin†and that they “didn’t love God enough, didn’t love others enough, didn’t sing enough, and didn’t speak in tongues enough.â€

They turned to Catholicism because:

The Howells were excited to discover the Catholic understanding of suffering as redemptive. They came to recognize that their son’s illness was not a curse from God, but a calling for him and for them to bear fruit by becoming united to the mystery of Jesus’ redemptive Passion.

Along with St. Paul, the parents learned to think of suffering as “complet[ing] what is lacking in Christ’s afflictions for the sake of his body, that is, the Church†(Colossians 1:24).

Maybe someone else can comment on this. I went to Catholic school, and while I heard that suffering could bring you closer to God, it was never portrayed in a way where God was giving you suffering on purpose to achieve this goal. It was just something that happened and like with any other life experience you could grow for it or use it for good, etc. Through my religious education, I was only ever exposed to moderate and liberal Catholic perspectives though. I am sure the more conservative ones do believe more like this family does.

However, as the Howells progressed in their faith journey, they came to realize that each life is a gift. They discovered in themselves a new attitude toward life and became open to having more children, even if that meant children with CF.

“All life is of value and all life is in God’s Hands, no matter how long or short, how fancy or poor, how sick or healthy,†they came to see.

You can believe that (and I think it is good to see value in everyone) without willingly exposing your child to a disease. Parents (er, sane ones... not talking about The Sparkling One here) protect their children from known risks, like having them wear a seatbelt while in a car, so IMO that is no different than protecting an unborn child from a known genetic risk by choosing not to have more children.

I'm pretty sure most priests would privately advise them to stop having more kids because it is dangerous, be thankful for the child they do have, and suggest that perhaps they can still be open to more life by considering adoption, or working with children in the community (typical advice given to infertile Catholic couples).

This gem :pink-shock:

“No one is guaranteed anything in life,†they say. They tell people that CF is manageable and that there are ways to keep CF kids healthy.

I don't have CF but pretty sure this is FALSE. It is not a manageable disease in that you can still have a normal lifespan and relatively normal life, and the "management" does not always last. Every child with CF is going to spend a significant amount of time being unhealthy. I just find this to be extremely dismissive of the struggles their children have dealt with and will in the future.

They also point out that a child with health problems, like a Tiny Tim, brings out the best in people. “They have ‘something’ you can’t put your finger on. They tend to be wiser. They charge into life, full-force. They make the world a better place and they want to be here.â€

And this is dehumanizing. I have had quite a few serious diseases... my parents don't love me because they needed a sick child to bring them meaning in life. Gross. My parents love and respect me as a PERSON. Furthermore, they don't want me to suffer and would NEVER say being that sick is something they WANTED for a child and their family because it gives them ~something special~. It has been worth getting to where we are today of course, and they don't pity me or themselves, but they respect and acknowledge that these experiences have been HARD for EVERYONE in the family.

Up until Rees was 10, the Howells would “hop onto the couch†with Rees to do his lung clapping (pulmonary therapy) for 20 minutes, three times a day.

“When more children came along, they would join us in the activity. Now that we have another baby with CF, the other kids argue over who gets to do ‘lung clapping’ for Adah.â€

This is just kind-of weird. CF is not a game and maybe it's just me being introverted but this would seem kind-of invasive to me to have everyone in the family so involved in my medical care. That is something that can be so deeply personal and intimate just because the patient is in a vulnerable position. Also, it seems irresponsible, in that I imagine the person doing respiratory therapy needs to be trained by a professional, and the parents shouldn't place that burden on the other kids in the family as it is literally keeping their other child alive. ETA: Why not have the kids help each other in another way that is more age-appropriate and less invasive or high-stakes?

Per the blog, their son is enrolled in a trial for Kalydeco and VX-809 which are drugs that target CF genetic mutations. Hopefully he and later his sister end up being able to benefit from these drugs so they don't have to suffer more due to their parents' stupid decisions.

Edit: Think I finally broke the second link. I'm not sure how much it matters since it's a news article.

[Jana814]

I'm sorry that is wrong on so many levels!! If I knew I was a carrier for a MAJOR disease I would do everything medically necessary to insure that my child(ren) did not get it.

[Angharad Crewe]

Wow. CF is no joke, I've known kids with CF; one died at 15 and the other has spent a lot of time in the hospital.

However, at what point does someone decide that they will not pass on their genes to the next generation? Do we screen everyone for genetic dispositions towards diseases like childhood cancers, mental illnesses, autoimmune diseases, etc? At some point, everyone takes a gamble with having kids who might not be 100% healthy their entire lives.

I agree that this couple is being irresponsible, but I'm just curious about where the "not having kids because of genetic reason" lines get drawn.

[halfheartedheroine]

Wow. CF is no joke, I've known kids with CF; one died at 15 and the other has spent a lot of time in the hospital.

However, at what point does someone decide that they will not pass on their genes to the next generation? Do we screen everyone for genetic dispositions towards diseases like childhood cancers, mental illnesses, autoimmune diseases, etc? At some point, everyone takes a gamble with having kids who might not be 100% healthy their entire lives.

I agree that this couple is being irresponsible, but I'm just curious about where the "not having kids because of genetic reason" lines get drawn.

Agreed. I've got an autoimmune disease that has a possible genetic component (I have zero family history, however, so...luck of the draw, I guess?) and it's classified as moderate/severe. According to the literature, I've got a 10% chance of passing it on to future offspring. So, while I was previously planning on definitely having kids, I've got to keep the autoimmune disease in mind. (although if my future kid has it, hypothetically I'd be able to spot the early symptoms better maybe?)

[chaotic life]

My best response is a cold hard dose of reality (snarky kitty do not follow the link, please)

http://womanreclaimed.blogspot.com/2012 ... night.html

If you read June and July of 2012, you can see the RAW and PAINFUL reality of what it means to have, to raise, and to ultimately bury a child with CF.

The CFF deliberately manipulates their statistics to make the prognosis look better and better and the best they can come up with is 41 (projected median NOT mean NOT current life expectancy). So the BEST case scenario is that you will be cut down in the prime of your life by a brutal and painful disease that will kill your lungs.

I would never support aborting a child with CF. They do have life worth living. However, I have no patience for the idea of a handful of parents that tell themselves it's no big deal to live with this disease. On a GOOD day, Micah lived with 4-6 HOURS of medical treatment every single day. At the end, I watched my son drown on his own secretions and mucus. It's a BIG FUCKING DEAL.

[PennySycamore]

One of my good friends in junior high and high school was a girl whose younger brother and sister had CF. Their disease was an incredible burden on her growing up. Thank the stars that she was really smart. On their worst days, she'd have to miss school because of their illness.

[lipstickgoalie]

Am I the only one that thinks the existence of this blog might seem to indicate that Abigail's blog might not be real?

[Ridiculous]

Why would it indicate that?

[Hane]

Hey, people, if you want to believe that suffering brings you closer to God, suffer away! But don't inflict it on your children. CF is a horrendous illness.

And, for the record, even the most conservative Catholic priest will endorse complete or partial abstinence for a couple who's decided not to have any more children.

[lipstickgoalie]

Why would it indicate that?

Because some of he details of Abigail's blog are similar and because some of the details of Abigail's blog are so...fantastic. As of late she has been inconstant with details and that could be due to the pregnancy loss but I was not the only person who thought the pregnancy or miscarriage might have been fabricated.

Just speculating.

[keepercjr]

I have CF and we buried my brother who died when he was 13. Yes you can manage the disease (I would say I am doing that pretty well) but those who are able to maintain somewhat normal lives while managing the disease are doing so because we are lucky! The genetic makeup of our disease allows us to do so. Even though my brother had the same 2 CF mutations as myself he died young and I didn't. What was different? We had the same parents, same upbringing, same treatments, same everything - except our other genes.

I also don't necessarily support aborting due to CF (but do support a right to to choose if a mom wanted to!) but you are playing russian roulette by being so cavalier about CF. My parents knew I had CF and took the risk of having 1 more child and we got my brother - and he died! I don't blame them at all. Before we had kids my husband had his genes sequenced to MAKE SURE he was not a carrier. As then we would have a 50/50 chance of having a child with CF. If he was a carrier we would have adopted. Having 1 CF child is hard - having 2 is even harder - especially on the parents! I can't even imagine what my mom goes through - losing her son from this terrible disease and then knowing that her daughter, her only other child, has the same thing!

Anyway, I think the decisions this family is making is crazy. Also - believing that having CF is from satan??? Really? That is nuts.

[Jana814]

One of my good friends in junior high and high school was a girl whose younger brother and sister had CF. Their disease was an incredible burden on her growing up. Thank the stars that she was really smart. On their worst days, she'd have to miss school because of their illness.

How horrible sad for your friend!! The that if one person has the diease they all do, was true for her.

[Jana814]

Their were 2 sisters on America's Got Talent a fews years back, who along w/ the other 2 kids in the family had CF. Not to knock the parents decision but after having 2 kids w/ the disease why did they go on to have 2 more.

[Cannelle]

I honestly have no clue how parents can be so cavalier about their kids having to go through such awful health problems. It's hard enough when your kid falls down and scrapes a knee and cries, let alone having to go through constant major medical crises. I couldn't do it to my kid. I couldn't. If I knew that I was a carrier for anything major that could be passed on, we'd go the IVF route and select for the embryos who had no chance of carrying on whatever we didn't want passed. Because I couldn't live with myself if I knowingly played Russian Roulette with my children's health and futures.

And as for people who are like, "Oh, it's in God's hands, blah blah blah," isn't it strange how God seems to pass these things on in a Mendelian fashion? That God plays by the rules of statistics? No one sees any bit of weirdness in that at all, or...?

[Jana814]

I honestly have no clue how parents can be so cavalier about their kids having to go through such awful health problems. It's hard enough when your kid falls down and scrapes a knee and cries, let alone having to go through constant major medical crises. I couldn't do it to my kid. I couldn't. If I knew that I was a carrier for anything major that could be passed on, we'd go the IVF route and select for the embryos who had no chance of carrying on whatever we didn't want passed. Because I couldn't live with myself if I knowingly played Russian Roulette with my children's health and futures.

Same here!!

[lilwriter85]

Looking though the blog now. I do agree with people who have said that his couple was being cavalier in regards to having kids with CF. But so far I don't think this couple is crazy like Abigail and her husband Jon. Abigail is a crazier convert to Catholicism in my opinion.

[Milka]

Because some of he details of Abigail's blog are similar and because some of the details of Abigail's blog are so...fantastic. As of late she has been inconstant with details and that could be due to the pregnancy loss but I was not the only person who thought the pregnancy or miscarriage might have been fabricated.

Just speculating.

Delurking to say that Abigail *is* real. I haven't personally met her, but we have friends in common. (They find her as maddening as we do!)

[GeoBQn]

There's a comment from someone who has the goal of bringing down FJ. She is totally consulting a lawyer to sue us for copyright infringement.

northerncffamily.blogspot.ca/2013/10/autumn-wrap.html?m=1

[lilwriter85]

There's a comment from someone who has the goal of bringing down FJ. She is totally consulting a lawyer to sue us for copyright infringement.

northerncffamily.blogspot.ca/2013/10/autumn-wrap.html?m=1

I just saw that comment. Hopefully, some of the lawyers on here will comment on that. But as far as I can tell some of the "I"m taking legal action against a forum" threats never go anywhere.

[lilwriter85]

On the topic of whether Abigail is real or not, she is real. There was a person who commented in one of the Abigail threads. That person IIRC was a homeschooler who knows Abigail in IRL.

[pikapika]

I am 13 weeks pregnant and just found out I am a CF carrier, I am Hispanic and have an uncommon mutation, that apparently is common in France and Quebec, go figure. My husband is getting his blood work done but we are already preparing for not good news as he has Irish and German heritage. we have decided that no matter what this baby in me will be cared and loved but that if he is a carrier we are adopting future children, I just don't think it would be fair. I would just not be able to play genetic roulette again and again.

[lilwriter85]

I am 13 weeks pregnant and just found out I am a CF carrier, I am Hispanic and have an uncommon mutation, that apparently is common in France and Quebec, go figure. My husband is getting his blood work done but we are already preparing for not good news as he has Irish and German heritage. we have decided that no matter what this baby in me will be cared and loved but that if he is a carrier we are adopting future children, I just don't think it would be fair. I would just not be able to play genetic roulette again and again.

Is your Hispanic heritage connected to New Mexico? The reason I ask is because some Hispanics in New Mexico have French Canadian heritage due to a period in which French trappers were marrying Hispanic women in New Mexico.

[lexiloumarie]

We have neighbors who had two sons very close together, who were then diagnosed with muscular dystrophy. As devoutly fundie as they seemed to us, they haven't had anymore kids since then. She's talked about wanting a girl, but not wanting to risk it. I can't imagine doing what this family is with CF.

[Miggy]

I just saw that comment. Hopefully, some of the lawyers on here will comment on that. But as far as I can tell some of the "I"m taking legal action against a forum" threats never go anywhere.

The comment made me laugh. I love people who post stuff on the internet and expect everyone to agree with them and have tantrums when people don't. (Of course, in this case it is the commenter not the blogger who is having the tantrum.) Assuming there are millions of people out there using the internet, it would actually be pretty sad if we all thought exactly the same.

[formergothardite]

There's a comment from someone who has the goal of bringing down FJ. She is totally consulting a lawyer to sue us for copyright infringement.

northerncffamily.blogspot.ca/2013/10/autumn-wrap.html?m=1

That has to be HomeGirlRuby. We usually don't snark on children here. And most people here don't actually comment on the blogs.