“reign in blood”

Since: May 09

Braidwood, IL

#1 Feb 18, 2013
DEAR AMY: Genetic testing shows that my son and I are cystic fibrosis (CF) carriers. Our research shows that most carriers are asymptomatic, as I am, but my son has some pulmonary issues, which is why the testing was done.

I've asked my parents to be tested so we can determine which side of the family the recessive gene mutation comes from.

When the results come back, I feel we have an obligation to inform that particular half of the family.

If a CF carrier has a child with a CF carrier, they have a 25 percent chance, with each pregnancy, of having a child with full-blown cystic fibrosis, a debilitating and life-threatening disease.

How do we gently and lovingly share this without causing unnecessary stress or drama?-- Loving Family Member

DEAR FAMILY MEMBER: I shared your letter with Laurie Fink, spokeswoman for the Cystic Fibrosis Foundation ( cff.org ), who confirmed your take on this disease. She tells me that your situation is not all that rare: One in 30 Americans is a symptomless carrier of the CF gene mutation.

In your approach with other family members, be straightforward, completely honest and neutral. Give family members access to the same resources you used to pursue testing.

You are generous to share the results with family members. They will decide on their own whether they want to be tested. The Cystic Fibrosis Foundation wants to spread the word that there is more hope than ever before for people with this disease. The life expectancy for a child born with CF has doubled in the last 30 years.

DEAR AMY: I have a lifelong friend. We are both mature single mothers with good jobs. My son is 4, and her daughter just turned 3. Our different work schedules do not allow us to get together with our kids as much as we'd like.

I sent my friend a text message stating that I would like to take her daughter with me and my son to a live-action children's show as a gift for her daughter's third birthday. She asked about the time of the show. I replied that it was at 6 p.m. She then sent a text message asking, "Why am I not invited?" My response was "Ha ha, parents not allowed, ha ha."

My friend's next text message threw me into a tailspin. "I'm not comfortable. She can't go. Sorry. Have fun."

I am hurt because I feel my friend does not trust me for two hours with her daughter without her presence, and I don't know why! Honestly, I cried thinking she doesn't trust me.

I don't know how to proceed. How do I talk to her about this?-- Brokenhearted Friend

DEAR BROKENHEARTED: Your friend responded to your invitation quickly and candidly. I cannot imagine why you would choose to be confused and brokenhearted when you could have simply picked up the phone and asked if there was a way you could make this event more palatable for her and her daughter.

Perhaps this just-turned 3-year-old might not be ready to go out to an evening event without her mother (my daughter at that age would not have been able to manage this). Your friend seems to have deftly tried to imply this by asking if she was included. Given how young the child is, you should not have planned this without getting that all-important "mom" stamp of approval.

Your assumption that this is a personal slight is childish. Grow up and have the moxie to say (verbally): "I feel like I blew it. I definitely should have run this past you before I made these plans. Let's do something together soon."

DEAR AMY: The letter from "Wedding Food Blues" really steamed me. I can't get over the nerve of this guest who is worried about her diet restrictions for events that won't occur for months.

Weddings are not about the guests, but the couple!-- Steamed Peas

DEAR STEAMED: This letter lit up my inbox. Dietary restrictions, allergies, etc., are becoming so common that I think these issues are more anticipated and less of a burden on hosts.

“I Am Mine”

Since: Dec 08

Location hidden

#2 Feb 18, 2013
Lw1: Do you think people who want kids would actually decide not to have them because of this info? I don't, so I don't see the point of this exercise.

Lw2: What Amy said. Instead of jumping to conclusions, how bout you have an actual conversation. Additionally, you probably should START by trying for an outing with all 4 of you and if that is not possible de to friend's schedule, THEN you offer to take both kids yourself.

Lw3: hey, stupid, lw was nit trying to be a pain in the ass. She just did not want hosts to waste money on a meal for her. Was happy to eat beforehand.

"DEAR STEAMED: This letter lit up my inbox. Dietary restrictions, allergies, etc., are becoming so common that I think these issues are more anticipated and less of a burden on hosts."
Bullshit. It will always be a burden to have to make something extra for the one person who can't eat what everyone else is eating.

Since: Mar 09

West Palm Beach, FL

#3 Feb 18, 2013
L1: My eyes are glazed over. You lost me. Sorry to hear about your CF gene though.

L2: Why DIDN'T you invite her? This is what's weird to me.

L3: Ugh.

“Where is Tonka?”

Since: Feb 09

Neda, stay with me! Charlie

#4 Feb 18, 2013
1 I got nothing.

2 3 is awfully young, and to say parents are not invited is just creepy in my book.

3 what you talkin bout Willis? She wanted to let them know so they did not waste food. Your just looking to be pizzed

Since: Jan 10

Location hidden

#5 Feb 18, 2013
L1: "life-threatening disease" Um, try terminal. I don't know of anyone who has full-blown CF who lives past 40. 25 years ago, I knew a woman who had it at age 40 and her case was considered to be very unusual. LIfe expectancies have increased, but most die in their 20s or very early 30s. Anyway, I think you get your parents tested, and then either email the entire family with what is going on so they can be tested, or hold a family meeting. This affects people's procreation choices. It's important.

L2: If she's your closest friend, then you should be able to share your hurt feelings with her. I think most parents would be thrilled to get a kid-free night at home. But maybe you're not as attentive as your friend is. Maybe you indulge in pop and sweets and she would rather not give her kids those things. You'll never know unless you discuss this with her.

L3: Um, no. Weddings are about the couple, but the RECEPTION is about the guests.

Since: Jan 10

Location hidden

#6 Feb 18, 2013
Mister Tonka wrote:
Lw1: Do you think people who want kids would actually decide not to have them because of this info? I don't, so I don't see the point of this exercise.
Absolutely, or at least to the point where if someone knows he/she is a carrier, their spouse can get tested. It's too serious of a disease (lots of childhood illnesses, hospitalizations, etc.).

I know a woman right now who has it. She's always int he hospital for something.

“The two baby belly, please!”

Since: Sep 09

Evanston IL

#7 Feb 18, 2013
Lw1: Sure you should tell your family; I really can't see why you're worked up about that. But IIRC, both my husband and I were tested for that when we started tryingto get pregnant so I suspect others in your family are aware of this.

Lw2: Pick up the phone and f*cking talk to her! Sheesh.

Lw3: I could care less.

“What's it to ya?”

Since: Mar 09

Location hidden

#8 Feb 18, 2013
1: Yeah get the testing done. Tell the family. Done. How hard was that?

2: Why didn't you invite the mom? OTOH if it's really a best/closest friend, I don't understand her not being comfortable with you. I would have had no problem whatsoever letting my best friend take Chris, at any point. Maybe it's you?

3: Ummm what everyone else said. Also, yeah Amy making a meal for just one person *is* a PITA, however there are ways to accommodate special diets within the menu if one has enough notice. Not five or six or twenty "special" (read: picky) eaters, but if one or two-ish people have real issues, it can be planned into the meals.

“...,to wit”

Since: Jun 09

Location hidden

#9 Feb 18, 2013
Tonka wrote:

Lw1: Do you think people who want kids would actually decide not to have them because of this info? I don't, so I don't see the point of this exercise.

Pelly replied:

Yes. I know people who got genetic testing, found they were both carriers and elected to 1.abort and after that 2. adopt.

The disease in that case was Tay-Sachs.

There was a high profile case in Chicago maybe 25 years ago when I was having my kids, where the parents were not told and they successfully sued the OB/genetics doc for wrongful birth- not wrongful ddeath although that is what happened to the kid.

Since: Feb 08

Location hidden

#10 Feb 18, 2013
Mister Tonka wrote:
Lw1: Do you think people who want kids would actually decide not to have them because of this info? I don't, so I don't see the point of this exercise.
I know more than one couple who have adopted rather than risk passing on health issues. Our friend got a vasectomy when he married because of a combination of issues with his side and his wife's health issues.
Not everyone is as invested in their own genes being passed on, and care more about being there for children who need them.
Sam I Am

Memphis, TN

#11 Feb 18, 2013
1. You just do it frankly and let them know there is this factor for them to consider. And Tonka, many people would definitely consider this knowledge in deciding whether or not to have children. There are numerous diseases/afflictions that are genetic that potential parents consider before comitting to having a child.

2. You're a dork. Why exclude your friend? Need to be the star much?

3. A) You're steamed? Get a life. B) Tonka, it is becoming increasingly common for caterers to at least provide a vegetarian option, and that can address a variety of concerns. It's hardly a one-off thing. I was at a tasting for my friend's wedding a few weeks ago, and the caterer herself suggested a small number of vegetarian plates to address people with food restrictions.

Since: Nov 09

United States

#12 Feb 18, 2013
She didn't describe her as a best friend/close friend but as a lifelong friend... That may have something to do with it.

“I Am Mine”

Since: Dec 08

Location hidden

#13 Feb 18, 2013
NWmoon wrote:
Not everyone is as invested in their own genes being passed on, and care more about being there for children who need them.
My comment was not about being invested in your genes, but more that I think it is more common that people see the possible bad outcomes of whatever situation and have the mindset that "that only happens to the other guy". 25% chance of having a child with problems means 75% chance of having a perfectly healthy child. That 25%? That wouldn't be "US".

Since: Feb 08

Location hidden

#14 Feb 18, 2013
Mister Tonka wrote:
<quoted text>
My comment was not about being invested in your genes, but more that I think it is more common that people see the possible bad outcomes of whatever situation and have the mindset that "that only happens to the other guy". 25% chance of having a child with problems means 75% chance of having a perfectly healthy child. That 25%? That wouldn't be "US".
Yeah, well, while YOU would take that risk, I would not. I know many do, but if I had been fully informed of the health issues in my biological parents and their families, and there was an issue like CF or Tay Sachs, I would never have risked it. Those odds just aren't good enough for me to gamble on such a thing.
And while for YOU it may not be about having kids with your genes, for far too many, it is.

Since: Jan 10

Location hidden

#15 Feb 18, 2013
Mister Tonka wrote:
<quoted text>
My comment was not about being invested in your genes, but more that I think it is more common that people see the possible bad outcomes of whatever situation and have the mindset that "that only happens to the other guy". 25% chance of having a child with problems means 75% chance of having a perfectly healthy child. That 25%? That wouldn't be "US".
I remember a TV news magazine show about a couple who took this chance. They aborted twice when the fetuses were proven to have CF. They had two kids with it already and wanted a healthy kid with a normal expected lifespan. Their fifth pregnancy was a healthy baby.
Julie

Chicago, IL

#16 Feb 18, 2013
j_m_w wrote:
L2: Why DIDN'T you invite her? This is what's weird to me.
Bingo.

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