Sharing the Pain of Loss

This morning I read a post on the Yahoo group Donor Sibling Registry by Allison Rouble of the blog GENdMOM. Afterwards I posted a reply. Both are below.

"Still Playing Head Games with Myself"

It never seems to fail with me, after being married for 11 years and having never used any birth control, having received a diagnosis of male infertility due to unexplained azoospermia and having to use donor sperm to create our family I still find myself looking at the calendar every month wondering if some how by magic I will have gotten pregnant the good old fashioned way by my husbands sperm.

I play this torturous mind game with myself, I think maybe I am pregnant, i do a detailed analysis of every phantom symptom I have. I further twist the knife in my heart by wondering if it will be a boy or a girl, what names would we pick, would we have to move or add onto our house to make room for another child. I do this month after month, and the inevitable always happens. Auntie flow shows up with the bad but predictable news that “NO you are not pregnant you silly girl, your husband is infertile and it isn’t going to happen that way”.

I hate her, my auntie flow. Hate her because she comes to me every month with the bloody reminder that I will never have a biological child with the man I dearly love. And stupid, desperate me looks in the mirror at myself every time she is here for her visit and says, “maybe next month!”

My reply as posted to the Yahoo Discussion Group:

I have been unsure how to respond to this post. I am that infertile husband, or rather was, and my first reaction is to say I am sorry. My next reaction is the following....

Most (admittedly not all) DI Dads like myself know how hard it has been or is for our spouses who shared our pain addressing male factor infertility. It haunts us terribly throughout the process. We feel extreme guilt for it and are eternally grateful for you sticking by us. With the birth of these DI children we find ourselves in love with both the child and each of you again so deeply.

Most of us don't realize that the sense of loss you feel continues and need you to tell us so we can work through the feelings with you. We would rather share your pain then let you suffer it silently and alone.

We can't make it stop but we can let you know how much we love you and how much stronger we are as a family and as a loving couple.

Post Secret: Sperm Donor via One Night Stand

One of this blog’s most viewed posts involved a December 2008 postcard that was posted on the popular Post Secret website. That post card was submitted by a donor conceived individual who was envious of adopted individuals because their fathers had not “jacked off in a cup for money”.

The below post card was published this evening, 12/17/2011, on Post Secret, and was mailed in by a man who apparently was chosen for a one night stand with the goal of effectively becoming a sperm donor by a woman whose husband could not naturally have kids. I am sure the child conceived by this IUI would be equally not thrilled to learn their conception story if they ever learned it.

Certainly looking at this post card from the point of view of an infertile husband, this brings out many of the fears that DI Dads have that their spouse would turn to another man sexually to create a child. For all he knows the wife, if she has chosen this path, might even let the husband think it is his child, until the truth would come out, via blood works or blood tests of some nature.

Granted while technically this post card details a donor conception, this scenario is not legally a legitimate donor situation and could lead to all sorts of custody and paternity issues, if and when, reality is confronted. But as a DI Dad as soon as I read this card all sorts of issues popped into my mind.

Year End Updates

Kids are doing well. They have been speaking with their male half sibling Z from out West on a fairly regular but unscheduled basis lately and the conversations are getting less silly and more “normal” or what passes for normal among 9 year olds. My son J does most of the talking from our side. The kids have not spoken with T, their female half sibling, in some time, my fault not making that happen, even though they have asked about her.

J asked about the donor again recently and whether he’d ever get to meet the donor’s kids, if he has any. I said it is unlikely that will happen as we’d first need to find the donor. I asked if that is something he’d want but I got no response. He still is close friend with the other donor conceived kids I know in his grade although this to my knowledge has never been a topic of discussion among them.

J has a crush on a little girl at his school. She is younger than him and they are at that stage when they are way too young to be “dating” etc and are taking on the aspects of a very friendly brother / sister relationship but one where they can’t wait to see each other every day. J was excited when this little girl said he was like a brother. Apparently that is a stage with little kids when they get closer to each other. The whole way home he was so happy and said he had three sisters and two brothers. One each of this count is this girl and her brother. Very amusing and will get confusing.

Over this past year I have dated women who have had young kids of their own. No one has met anyone at this point as none have lasted the requisite six months called for under my separation agreement. The possible concept though of extended blended families will be very amusing down the road if a relationship becomes that serious. Half siblings, step siblings, full siblings. Family tree time will need a lengthy color coded legend more than it already does.

As I write all this I am concerned as my sublet is up at the end of January and I have yet to find a new apartment. I have lived these last two years in the same building I lived in with my then-wife and the kids. It helped the kids adjust to the separation coming back to the same building every day even though they split their time between apartments. That issue has been the main issue of concern to them more than anything donor conception related. They seem so far well adjusted and handling it well enough.

Time to go. Nothing else new to report with the Yahoo DI Dads group.

WiFi May Damage Sperm Quality: Study

An Argentine study is claiming WiFi in close proximity to sperm may damage the sperm's quality. The article in yesterday's NY Daily News is not that surprising as was the conclusion of a 2004 study that use of lap tops causes an increase in temperature to the scrotum and hence sperm causing damage.

Just something to think about when working at home or accessing WiFi on a laptop PC. Better safe than sorry. Guessing using the WiFi on top of a nice metal table is preferable to using the couch.

Dating Sites and the "Want Kids" Box

One amusing facet of dating again as a adult is the proliferation of on-line dating sites. One question on most profiles is whether you want kids. Many single women looking to get married also will want to have a family. Not all but many. When some see you have checked off you are done having kids it it obviously closes off some potential relationships.

This would never happen but can you imagine a box which would state "Can't physically have more kids but are you open to DI?" Not happening.

I am done no matter what. My kids are all I want unless I meet someone who already has kids. Is amusing thought though as it would the put issue out there and not have to worry about bringing it up later.

Divorce and Unused Donor Sperm

Within the past few weeks I signed my Settlement Agreement with my spouse settling the division of our assets, agreeing to all issues surrounding our kids, etc. This agreement will now be filed in the NYS courts and eventually be approved resulting in a final divorce decree. We did not include any section detailing what is to become to the unused donor sperm vials still sitting in storage at the cryobank facility. We forgot to address this issue.

Have we set ourselves up for some legal battle over the disposition of these remaining vials?

For the last several years we had left these vials sitting and paying fees for their storage. Or should I say I have been paying these fees. I still am.

The question had never been whether we would be using them and certainly we are not now. The question was whether they'd be used for medical research to identify the genome or whatever could be learned from them as they provide direct DNA samples from the donor.

Could we determine if there are any latent diseases the donor was carrying? I was told by a friend that any such analysis could not be used by insurance companies to claim a pre-existing condition as the kids are not the ones being tested. But to be honest I don't have extra funds to pay for any such analysis.

Testing would be nice but even to send them would probably cost some money as I am guessing there would have to be some subterfuge as I am guessing the bank would not allow a vial to be sent anywhere other than a doctor's office under the belief it woud be used for an attempt at conception.

We never intended to sell them back to the cryobank as we did not want to see other half siblings created unless they were to be used by a family who already had kids by this donor to ensure full siblings within their family. Perhaps this is selfish but had been discussed with the other two known donor sibling famioies and we were all in agreement on this issue.

The account with the cryobank is in her name but the payments are set up to be from me. Either of us I guess could direct the bank to destroy the remaining vials. At this point neither of us would probably try to legally prevent such an action but it would lose the testing opportunity.

So again the question continues what to do with the extra vials but with the background of larger issues.

Will They Misinterpret My Exasperation?

My daughter's weekly homework packet is due Monday morning. Inevitably when she comes to me Sunday nights from her mother's there is always a large chunk not yet done prompting me to get on my daughter's case about why this much is left undone until the last minute. It usually results in hours of prodding her and both of us becoming very very exasperated.

Will she interpret this years from now as just a dad being upset at her homework skills or will she take this as some underlying issue? I should not worry about such things and really I don't do so always but sometimes I do. I read too many blogs and articles about kids who always felt an underlying tension between themselves and the parent they either later learn is not their biological parent or that they already knew. And then I stupidly reconfigure those into fears.

I love my kids so much and like any parent I just want them to do their best work. My little one is not the fastest in getting her work done. She never has been despite what skills we try to teach her. It's just so exasperating. My creating fears that should not exist does not help matters.

When Finding a Donor or Half Sibs Could Mean Life or Death

When I first started writing this blog, I came across a number of blogs written by young donor conceived adults mostly from outside the United States. One such blog was "who do you think you are?" written by Narelle Grech. The blog's URL subtitles it as T-5s daughter. She was an opinionated, straight talking, never afraid to be in your face blogger. And she challenged my thoughts and feelings about donor conception with a semi-confrontational tone which I appreciated. Others tried the same tone when commenting on my posts and came off as simply angry. Narelle's honesty I found appealing and I knew her opinion to be worth listening to.

Narelle is now battlling stage four bowel cancer. And where her search for her donor and half siblings was originally an effort to know who she is, genetically, ethnically, and for all the normal identity issues most donor conceived are trying to answer, her quest is now to also find these individuals to counsel them to get tested for possible early warnings of cancer. I learned about her current battle through this 10/22/11 story in the Herald Sun.

Her story, this story, is another reason why I believe it is so important that access to records not be lost or taken away or left to the auspices of individual commercial cryobanks. In Narelle's case the records exists and are known where they are but she has no legal right of access to the existing identifying information about the donor.

This is an example of where the system needs to include mechanisms to allow such medical based access as it is clearly a case where lives could be saved or lost.

Participating in Web Chat re "Donor Unknown" Today

As I noted earlier in the week I will be participating in a web chat today to coincide with the premier of the documentary "Donor Unknown" on PBS website Independent Lens.

This movie is an interesting contrast to the Style Network: Sperm Donor as it involves involves young adult donor conceived individuals making contact with their donor Jeffrey, California Cryobank Donor 150. When the Sperm Donor show involved little kids. The two donors profiled in each program could not be more different.

The chat is scheduled to start at 1pm EST in real time. I am still unsure if it is being broadcast in real time or not. Probably a delay of some sort for editing etc.

UPDATE: Post Web Chat

The text of the web chat can be found HERE. Scroll down the page. It was an interesting experience. I really need to learn how to type faster. Good panel and very interesting discussion. Very glad to have participated.

Parallel drawn between the Donor Conceived and Occupy Wall Street

Lindsay Greenawalt of the Cryokid Confessions has analogized the plight of the donor conceived to that of the protests of the 99% which presently reside at Zuccotti Park here in NYC. I understand the intent is to draw the parallel of a group without power over decisions that affect them. Lindsay herself built upon posts by The Declassified Adoptee written with regards to the Adoption Rights Movement. Link here for the full text of the pictured statement.

What I am not sure of, and perhaps this is still an issue I have regarding the #OccupyWallStreet movement is that the lines of who and what is being protested are blurred (at least for OWS). The OWS movement right now, as I see it, is a simultaneous protest against everything where the general population, the 99%, has no control and the effects have economically disadvantaged that 99% where the 1% benefited.

Lindsay is pretty direct in her statements that here in the US (1) the infertility industry is not centrally regulated, (2) records can be destroyed and held back without recourse, and (3) America has turned a blind eye to the whole thing.

Part of me dislikes linking the plight of the donor conceived to the OWS movement as the OWS while catching the eye of the world’s media its seeming lack of focus does a disservice to defined issues such as that of the donor conceived. I think Lindsay’s goal was to highlight the lack of control held by the donor conceived, which is a positive goal, I just wish the movement she is associating with seemed less disjointed.

Listening to DI and DE Moms: NYC Gathering

Last night I attended an installment of the NYC Gathering's dinner get-togethers here in Manhattan. The group organized by Sara Axel of the blog "Our Story Begins at Home" usually is attended by women who either used donor eggs, donor sperm, or both conceiving their children. I was the only dad in the room.

Last night the dinner had Wendy and Ryan Kramer as special guests. Both had been in town for an SMC event held in Brooklyn this past weekend. The featured topic discussed by Wendy and Ryan was "Who's Your Mommy? Should they tell their twins they came from donor eggs?".

The identity issue is wholly mixed together with the disclosure issue so both topics were discussed and brought up by the roughly ten women in attendance. I sat at the far end of the table as I have a bad cold plus I had the kids with me as the dinner was immediately after their school extended day pickup. I also heard the common theme that some of the husbands did not want the kids to know their conception stories more it seemed to their discomfort than the interests of the kids.

The moms in discussing the "Who's your mommy?" questioned the differences in connections to the donor when the mom carried the fertilized eggs producing their children. The fears of feeling less of a natural parent. Overall an interesting evening and I was sorry I felt like garbage and that I had to leave early.

Web Chat to Coincide with PBS Premier of "Donor Unknown"

This Thursday October 20th, I will be participating in a telephone chat to coincide with the US premier on PBS of the documentary Donor Unknown. As I understand it, the chat will be recorded and be available to listen to on the PBS website set up for the documentary.

The documentary is being premiered as part of the Independent Lens series on PBS. The participants on the chat are slated to include myself and :

Lindsay, a donor conceived adult who blogs over at "Confessions of a Cryokid"
http://cryokidconfessions.blogspot.com/

Jerry: Director of Donor Unknown
http://donorunknown.com/production-team

Steve: Marketing & Communications Manager for Independent Lens

I expect it to be an interesting chat. Hopefully some of you will look for it, listen and then comment on both the movie and the chat. You can link through the images above for the Independent Lens site to see the trailer and clips from the movie. Link below to see the resources page on the Independent Lens movie site.

One amusement is that the resources description of my blog has me having two boys. My daughter was not to thrilled. They were amused to see my blog linked to from a PBS website though.

Review: "Style Exposed: Sperm Donor"

I watched the "Style Exposed: Sperm Donor" episode yesterday evening. I enjoyed watching it. From a posting by Wendy Kramer of the Donor Sibling Registry, to the Yahoo DSR Discussion group, the continued showing of this episode on Style has yielded more donor signing up on the DSR than I believe usually do in a single year. Which has resulted in numerous matches between donors and offspring.

There are only 4 more scheduled showings of the episode on the Style Network. The last one this Friday at 1:00 am. [UPDATE: watch it here above or here]

Certainly seeing Adriene's and Kris's meeting and connecting was great to see and feel a part of. Watching Adriene talk with her dad and mom about her feelings for her dad despite his not being her biological donor dad was very touching and comforting. The connection she felt for Kris, her half sibling, was palpable and rewarding to see. You could see the joy in Kris's face having Adriene there for her big day.

The other half of the episode involved watching Ben Seisler, former donor, from Boston address the fact he has at least 74 offspring and balancing the concerns and fears that his fiance was herself having. At the same time he himself was dealing with his own thoughts and concerns meeting for the first time with two children conceived from his sperm.

He seemed like a man who honestly was trying to find his way. As he said to his fiance there is no guide book for this. The concerns I have for them is how does he balance his desire to provide info to these families and balance his life as a married man. There is a danger that this could create a divide in his marriage.

At the same time a number of these donor families, if Ben allows more to meet him, will want him to be a presence on some level in the lives of their children. It would appear so from just this one family. Not all will want contact but even if a few do it will be something he has to address if he plans to on treating these kids as clinically as he intended to before he met family one.

My own thoughts are the episode was a positive step to getting the stories out there and certainly it encouraged more donors to step forward. Will more donor family stories follow? Certainly the DSR hopes so and so do I. But will the general public, and advertising sponsors, have a desire to see a periodic series? I am not sure they would.

There is no guide for this.

Requesting the Cryobank to Contact the Donor (Again)

With all the recent news coverage regarding donor conception I have become curious again about our donor and wondering if he also has been noticing the recent news stories and wondering whether he'd be open to agreeing to contact with the children once they turn 18. His donation had been an anonymous donation with no provisions for identification or contact at any point

A number of years ago I requested the cryobank we used to try to contact the donor and ask a couple of questions. One question I had was regarding the donor's religious background. The cryobank made contact and the donor answered as best he could with the info he knew of his family.

I am curious to ask the cryobank to contact the donor again and whether he would agree or be interested in converting, under the cryobank's auspices, from a completely anonymous donor to a donor ID status where he would be open to contact once any of the kids turns 18 and initiates contact. It may be that the cryobank would not even ask my question but I am curious to ask.

Before I do though I need to discuss this with my children's mom and the mothers of their half siblings. I am curious for their reactions to. I am just thinking with the recent news coverage, the Donor Unknown documentary and the new Style exposed episode perhaps the donor might be receptive to the idea. For all I know neither of the 4 children will even care but it is an opportunity I am thinking should be taken so it's there when and if they want it.

How Linked are Issues of Openness to Anything DI Related? And Am I Wrong to Link Them?

I posted a question this weekend on the DI Dad Yahoo Discussion Group asking what were some of the members greatest fears about using donor insemination etc. A couple of the responses involved fears of whether the child would love the dad. My responses included the thoughts that if a child is shown love and respect that the child would have no reason not to love that parent.

It was how I continued that leads to my question of how connected the issue of openness is to anything donor insemination related. Directly or tangentially.

I stated my belief that if a child is told early enough and as a normal part of their life I think the question of whether a child will love the parents is or would be a non-issue as the children would only know love from these parents. If a child is never told and always shown love they will of course, in normal situations, also love their parents. But if the secret is later found out it may cause a rift, in those relationships, it may not. My point is as always that telling early does more to take away the pain of a possible secret being learned and resentment being born.

It was my bringing up the issue of openness and telling that had one long time member of the group asking me to not always bring the conversation back to openness. I did not think I had been doing that but perhaps I do. He felt I was veering away from the group is for.

Does my thinking and response go beyond the initial answer given to my fear question. Certainly it does. Am I pushing my openness views. Can't argue I am not. But have a crossed a line? Perhaps. I do try to state that these are my views and it is also possible not telling may be right for some families. I can't believe how but I guess it could be.

So again how linked are all these issues? I think the entire picture should be known and looked at together as to do otherwise can allow us to compartmentalize and rationalize. Donor conception has causes, action / reactions, and effects. As the character Dr. Ian Malcolm in in the movie Jurassic Park stated "You've never heard of Chaos theory?" Life has a way where all information eventually gets out. To ignore all the possibilities when decision making I feel is to be acting in a vacuum and life is not that easy.

Update:
As Marilyn indicated in the first comment, my statements are not meant to state that openness will prevent a donor conceived individual from having issues with the concept of their conception story or wanting to know more about their biological father. I only meant to indicate that openness allows the truth to be known and that from there a base can be developed for a family to work from without anything hidden lurking waiting to be exposed and creating additional issues that may divide an individual and the parents that raised them. Does that make sense?

9/15 NYC Presentation - The Ethics of Telling Children if They Were Donor Conceived

Sorry for the short notice but just learned about this speaker / presentation.

Per an email to Ms. Sweeney at Columbia the presentation will be in Fayerweather310.

Eric

------Original Message------

From: Infertility Network

To: IN-Yahoo

Subject: New York, NY: 'The ethics of telling children if they weredonorconceived', Sept 15

Sent: Sep 15, 2011 12:32 PM

The ethics of telling children if they were donor conceivedSpeaker: John Appleby, Welcome Trust Fellow in Bioethics, Cambridge University,UK

Sept 15/11. 6:00-7:30pm. Columbia University, Morningside Campus, New York

NB.The following location are both given in various notices about this event, socheck with Meghan Sweeney, to be sure which one is correct before going:

* Hamilton 516

* Fayerweather 310

Presented by The Columbia Master of Science in Bioethics program

RSVP: Meghan Sweeney, ms4184@columbia.edu

What Does Our Donor Think about 150 Offspring?

Lately with the two main donor stories currently hitting the media about upwards of 150 offspring or the Ben Seisler story about him having over 70 donor conceived offspring I am wondering what our donor thinks of all this?

If he knows his donor number he would see there are only four kids registered as having been born from his donation. I am guessing he would then sigh with possible relief. He must be in his mid thirties by now at least. I wonder if he is married did he ever tell his spouse he donated sperm? Guessing if he has kids they probably have no clue. But he must wonder if there are more out there. Does this scare him?

Seisler himself seems so far amused by it all and not overwhelmed, yet. Apparently Ben Seisler's fiance was told and from I saw on the news she is a bit concerned if all these kids start coming around looking for her husband. Seisler's story is being told as part of a documentary titled "Style Exposed: Sperm Donor,’’ which airs Sept. 27 on the Style network.

So far our four siblings, my two plus their two KNOWN half-sibs seem content with just each other as they each live in their own little worlds not even thinking about each other day to day. What their donor thinks about all this will remain a mystery.

Debate: One Donor 150 Offspring

In the past week the NY Times ran a piece titled "One Donor 150 Children". That article can be found here.

The TODAY show the next day ran a video segment about the article speaking with Wendy Kramer of the Donor Sibling Registry from her home in Colorado and an in studio guest bio-ethicist. Both woman are moms to donor conceived children.

The ensuing debate has lead to a NY Times on-line debate among ten parties associated with the industry or interested groups. I encourage everyone to read the debate HERE and come back and let me know what you think. I was struck how of all the experts and individuals only one parent was asked for their opinion and that was Wendy Kramer. The doctor who contributes was the doctor that helped my wife and I conceive our kids.

Wendy's op-ed contribution was co-written with Naomi R. Cahn a law professor at George Washington University and the author of “Test Tube Families: Why the Fertility Market Needs Legal Regulation.” Their piece suggested a three prong approach at regulation, (1) required data base and tracking by the industry of donors, births, etc, (2) limnitation on the number of children that can be born from a single donor, and (3) limited disclosure of a donor's identity (i.e. reconsidering the practice of donor anonymity).

I must admit of the debate I have read so far I am amazed how some of the writers can't look beyond the donor industry and insurance company point of view and the truth of the numbers to focus on what is best for the offspring. Yes people will find limitations put before them in their quest to have a family but as a parent I think looking back, if successful, the speed bumps reform will bring will be recognized for the greater benefiit it provides society and the offspring.

General Update

I can't believe school is starting this week in NYC and that it is already September. The Summer flew by at least it felt like it did.

Kids are both fine. They had a fun phone call with their half sibling Z from out West. My kids got extremely silly and hung up several times on Z not meaning too and blaming each other each time it happened. I wish we could see the half siblings more often as we did not get a chance to see either T or Z this Summer. It's been 9 months since we have seen Z and about 18 months since we have seen T. Winning a pile of cash in the lottery would be nice and help here and a lot of other factors in life these days.

Both kids have received their school assignments for the next two years as their school loop the classes with the same teacher for two grades. It has its pluses and minuses. What's interesting about is that my son is again in the same class as the other two donor conceived boys he has shared a class with since kindergarten. At the end of these next two years they will have been together for 6 years.

I asked J if he has ever discussed donor conception stuff with one of the boys and he said he has not. I am still not sure what the third child has been told and I have not discussed the topic with his mom in a few years. The one who does / must know again has two mommies so the issue is out in the open. Day to day it's a non-issue in the house or for the kids these days.

Art/Commentary - Mobile Sperm Bar Seeks Donors

The blog "Gothamist" in here in NYC reports today the following:

"Later this month, a mobile "SpermBar" will hit the streets of NYC, setting up on Museum Mile to offer delicious non-alcoholic cocktails made by Cristian Molina, who does the exceptional cocktails at Rouge Tomate. The SpermBar is an edible interactive art installation by French artist Prune Nourry, who says her work is "inspired by the commoditization of human reproduction and the ‘customer satisfaction’ culture." It sounds like an amusing project, but lovers of semen-infused beverages beware: the mocktails won't actually contain sperm! Oh, these "conceptual" artists and their confusing "happenings"... "

Link here for the balance of the blog posting. Interesting mix of art and commentary. On top of everything else I have explained to my children I don't expect I will go anywhere near this cart with them as I don't want to discuss what this cart is trying to say. Can't even imagine how one would start. The possibility of a child asking if this is where his donor contributed is not an image I want.