Stopping the world and getting off...


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I tried to post about this last week, and it got eaten up by the goblins. It's probably just as well, I know much more now than I did then.

You'll all probably remember that L wanted a baby was going to get married a year ago February to a much older man she had just met who owned a lumber mill in OR, and then two months later was with a different much older man from New Zealand living in OR and was going to marry him. She'd been weaning me out of her life for a few years, and asked for oodles of money for her wedding. When we told her we would only give her $1,000 she told me that I "was never much of a mother to her" and had her childhood pediatrician/lady who constantly testilied against me in custody matters stand as her mother of the bride. We moved to NC a week before her wedding, which we were not invited to. It's been a hard transition, but I have found other reasons that it is good for us to be here. I have financial goals that I think I can meet because of the pay/cost of living differences, and we're settling in, slow but sure.

Last weekend when husband and I were out shopping, his phone rang. It was L's dad, R. Of course husband stopped in his tracks and I kept moving, so it took a couple of minutes to catch up to husband saying "Yes, R, we're settling in well". I give husband the stink-eye and start giving the "CUT HIM OFF!" signal to him. Then I hear husband tell him the name of the small (10k) town we're in. I must look like Jerry in those Tom & Jerry cartoons when Jerry has pounded his thumb with the hammer. husband gives R his work address, sans suite number and zip code and hangs up. We're at the check-out.

R had called husband to say that L and her new husband N were ready to start their family and they wanted me to give them a sample of my DNA, my doctor records regarding my Muscular Dystrophy, and any past DNA test results that I have. This is where you all get a lesson in high finance genetic engineering...

There is a process prior to invitro called PGD or Pregenetic Determination testing. It runs about $40k - $50. I need to start this off by saying that this is not a genetic test. It's meant to narrow a field. Mind you, I know the foremost authority in this field so I was able to call and get the scoop on how all of this works. We all know that a child gets DNA from both parents, and each part of the DNA can come either from mom, or from dad. My particular type of Muscular Dystrophy, FSHD is what they call "autosomal dominant", and what that means is that if you get that particular genetic code from your one parent that has it, you get the disease. If you get it from the parent that doesn't, you don't get the disease. PGD testing is done on embryos, and in our case it's more of a "map" than a "test". My friend explained it to me like this:

In my house I have a green front door, and on the door is a round door knob and a lock. Outside my door is a driveway. Beyond the driveway is a mailbox, a sidewalk, and a fire hydrant. That's three things on each side of my driveway. In this test the driveway is where the genetic code for FSHD is. What they do is take an embryo that has divided up to 16 or 32 cells, and they pull out one or two of those cells. They have looked at the genetic code for each parent and have made markers for them. I have FSHD and mine is the one above. The other parent doesn't have FSHD and has a red front door, a thumb latch handle, and a mail slot with a driveway leading to a dirt road, a post and a telephone pole. We both have a driveway, though. What the test does is cut the driveway in half, and see what is on either side of the driveway. The less things that match to mine, if in fact none of them match to mine, the less likely that embryo has FSHD. The trick of this being that for this test to work with FSHD, you still have to do amnio at 12 - 15 weeks to determine if the gene was implanted. Then if you really don't want a child with FSHD, you get an abortion, and then you get to spend another $40k to $50k to test more eggs and another whatever for the IVF.

Enough science, and back to the store. I told husband to give me his phone. I don't have R's number anymore, I deleted ALL of that out of my phone a month or so ago. I called right back and it went to his work voicemail. I told him that I thought that L had made it pretty clear what she wanted her relationship with me to be and if she didn't have the nerve to call me herself she knew the answer as to whether or not I was going to give her my DNA, past test results and my doctors records!

So I go home and search my old junk email account where I had had everything forwarded to when we moved and before we got our new email address. Two weeks ago, R had sent me a nice breezy email hoping that I was well and informing me that "L and N are ready to start their family... I know that you and she may not see eye to eye but I'm sure you'll agree that it's better to help her do this than for her to have an abortion." Which, of course, it takes me ten minutes to find online isn't correct. There's nothing from L. They've gone with doctor know-it-all again who doesn't have a clue and are just running blind. I sent him back a quick note and told him that I was pretty sure that he wasn't the right one to ask this of me, and L had made her choice as far as I was concerned. I didn't see how I could possibly have made it any clearer than moving to NC without a forwarding address. Beyond that, I didn't have any inclination to help L become a parent, given that I couldn't imagine that I'd ever have a relationship with the child that would go beyond it being used as a baseball bat with which to bash me upside the head.

Of course, he wrote back that he found it difficult to believe that I would want any child, let alone my grandchild to be burdened with FSHD. I didn't and still haven't read beyond that. I talked to an attorney, who told me to write him a letter telling him to never contact me again, to not talk about me to anyone, and to make no disparaging remarks about me. I told him that the should tell L the same. I sent it Fed-Ex with a confirmed signature. It was delivered yesterday morning.

Last evening, my phone rang. It was L. I sent it to voicemail. I listened to it with husband this morning. She says "Hi, it's L. Um... N and I are in Arizona at a resort, and uh, the reception isn't very good. I need to talk to you, so, if you call me, leave a message, because I might not be able to answer, because, uh, the reception isn't very good" (I don't want to dress you down in front of my husband because I don't want him to know what a royal ----- I can be) "and I'll call you back, or, uh, I'll uh, call you." I texted her back to not ever contact me or husband again.

On a side note, we talked to M this week in conjunction with this. She asked him for DNA too, which he gave. Not that it will be of any use, but it's their money. M told us that he had not been invited to her wedding, nor had my parents, nor had R's wife. It was the last straw for R's wife and she left him. Does anyone disagree that this woman should not be breeding?

I'm sorry, guys. I just can't go through this with her again. And the %&^! if I'm giving my medical records to anyone - let alone her or her dad! husband and I are exhausted. I'm not sure if we're ill, or if we're just emotionally wiped out. Neither of us have any energy at all. He called in sick to work on Friday and he doesn't get sick pay. I can't hardly get him out of his chair in the other room. I'm good for maybe 6 hours awake a day, and then I just need to lie down. I know that we are doing the right thing. It just sucks...
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I agree that you're doing the right thing. She made her bed now she can lie in it. You don't owe her anything more so I'm proud of you for not falling for the emotional blackmail R threw at you and for sticking to your guns. If their kid inherits the disease or not is not your problem. Life is what it is and most people have to deal with whatever it throws at us. Aborting because of a disease?!? Hmmmmm........ how sad is that?


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Staff member
Geez Witzend, I am sorry! That does suck. I don't know the whole back-story, but from what you've stated, this just sounds horribly lacking in any consideration for you. Sending gentle hugs and warm wishes that you and husband find your energy and get back to health and vitality.


Well-Known Member
How much medical history can an adoptee get? It's "some", but not "doctors records" for sure. Even in a fairly close family, we'd share diagnoses and prognoses, but... that's as far as it would go. EVER. No matter what other aspects there are to the situation, the request is downright unreasonable.


Active Member
I think you handled it very well. My husband would have done the same too much information when startled by a call like that.


Well-Known Member
Hugs....sorry I wasnt here. Been a royal pain here too. I think you are right. She knows she has the disease, you have it and M has it. Deal with it.


Witz - simply put; you need to care for YOU the best you can & FIRST. Rest and stay as healthy as you are able to. If protecting yourself from emotiional upsets will help - do what you need to do .. .. .. let your inner instincts guide you.


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I'm not a science whiz, but I can't figure out why they need YOUR DNA? Test L and see if she has the gene. Since you've said it autosomal dominant and she doesn't have the disease, she probably doesn't have the gene. How would her egg get the gene if it's not in her body? Am I missing something?

I would also change my cell phone number and have a lawyer send them cease and desist letters. Any mail should be returned unopened.

I bet R's soon to be ex wife has plenty of tales to tell...


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Given their can not trust all. I dont even believe the reasons they state for wanting your records. So, let it go and feel good that you did not give them an opportunity to mess with you once again. Good job!


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I'm not a science whiz, but I can't figure out why they need YOUR DNA? Test L and see if she has the gene. Since you've said it autosomal dominant and she doesn't have the disease, she probably doesn't have the gene. How would her egg get the gene if it's not in her body? Am I missing something?

I would also change my cell phone number and have a lawyer send them cease and desist letters. Any mail should be returned unopened.

I bet R's soon to be ex wife has plenty of tales to tell...

Sven, L does have the disease so they can go from there. But if they have more generations they can narrow what they look for. It still doesn't eliminate the need for further definitive testing in utero.

The lawyer I saw said I had to start with a letter to him - I have his work address so I did - and to anyone else I don't want to hear from. I don't have L's address, so text was as good as I could get there. I would pay a fortune to know how to get in touch with his new ex, but unfortunately I deleted her address from my address book and I can't remember her last name. She didn't take his. I'm assuming she kept the house...

I still know so few people here, I'm not ready to change my phone number yet. Besides, he's a lawyer. He knows that if you've been told to not contact someone you are risking your license if you do. I doubt that I'll hear from him again. If he does, I'll sue the pants off of him.


New Member
She can proceed without your DNA it isn't vital for the process. I have a friend with MD and she did the genetic process also. Her father was dead already so she didn't have his. The doctors can work around it. Take care of you and block those numbers so they cannot call your phone again. -RM


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After all you have been through with L and R....

I don't see this as in issue of right or wrong. Considering the history of vicious behavior towards you that has gone on for decades, I'm thinking you are reasonable in your demand to stop all contact. I'm not versed in MD, but it seems from the information you gave, and the responses from others, it's not mandatory for her to have. Plus, I don't blame you at all for not wanting such personal information about you being in their hands.

Take care (((hugs)))


Shooting from the Hip
Witz - first. :hugs:

Now having said that. I am completely pro-choice, which means that anyone can do what they want t with their own body but they better not tell me what to do with mine.

husband and I discussed at length and declined amnio or CVS because - we have wanted Bean for so long - what we are given, we are given for a reason and we wouldn't have teminated anyway.

High cholesterol, uncontrolled diabetes and prostate and breast cancer run in both our families as does alcoholism. I'm sure there's something else out there, too. Plus, being a little older Bean is at risk for Downs'. The not-baby last year? The genetic makeup of the tissue was Turner's Syndrome. But - to go to 12-15 weeks, then have to start over? Unh-uh. And you are absolutely right. I admire what you did and how.


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Thanks, all. I feel better this evening than I have in a week. I really am hopeful that she will leave us alone and this will be the end of it.

I'm with you, Stepto. My body, I do what I want, your body, you do what you want. That means she can go through these procedures and I don't have to give anyone my DNA.

I would rather not have had my children have MD, or any of the other host of genetic problems I may have passed on to them. Factor V Leiden is absolutely deadly while FSHD is not, and L has that. Why not test for that while she's at it? But to go through all of this only to have to go through Amnio and/or CVS as a further rule-out down the road... It just feels as though L has only given people part of the truth of all this money they're going to spend. Big surprise. Typical L. Her dad either didn't know or was lying to me when he wrote that he was "proud of her for doing it this way so that she could avoid an abortion".

Anyway, it's really good to know that I'm not alone. These decisions are so alien to the Ozzy and Harriet world we all feel like we should live in. Of course, Ozzy and Harriet's kids were difficult children in real life, so...


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Sending hugs and really sincere hopes that you and husband can get back into a peaceful Southern groove. DDD

Hound dog

Nana's are Beautiful

She can do other testing to find out what she needs to know. Regardless, she knows the risk to a fetus so it's on her for deciding to go ahead and try anyway. There is no need to involve you. But perhaps she thought that a grandchild might be enough to soften your resolve concerning her. Who the heck knows?

But I think you did the wise thing.


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There is no need to involve you. But perhaps she thought that a grandchild might be enough to soften your resolve concerning her. Who the heck knows?

I'm pretty sure I know that this wasn't even a momentary thought that crossed her mind. If it had been, she would have contacted me herself, rather than have her attorney father do it for her. She knew darned well that my resolve was soft towards her for 30 years and took advantage of that. It's going to take much more than a grandchild I'll never see to soften my resolve.


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Yes, if she wanted to soften you, she would have contacted you directly with news of a little bundle of joy that needed to know Grandma. Not that it needed to know Grandma's DNA. Thats like saying I am thinking of having a baby but I want to know your social, bank account numbers and all financial info so I can decide if the baby will inherit anything worthwhile from you when you die!