Sunday, December 13, 2009

"Find My Family": An Adoptive Parent Responds

By Lisa at Pack of Three for Adopt-a-tude

The ABC reality show Find My Family first aired in the United States this past November. Each episode involves the reunion of an adoptee with his or her birth parents. Emotions run high. Tears flow on-screen and off. In other words, it's great television—but does that make it a good depiction of adoption?

Click here to watch recent episodes.

From the literal "family tree" on a sunny hillside to the earnest hosts, Find My Family pushes different buttons for adoptees, birth parents, and adoptive families. Even some mainstream TV reviewers have called the show "grotesque." When it was first picked up by ABC (it's based on successful "relationship reality" programming in Holland and Australia), Variety ran this headline: "ABC adopts 'Find My Family' show."

But clearly not everyone in the adoption community feels the same way. The "grotesque" remark from a TV critic doesn't account for why reunions really are emotional and difficult to pull off. At Adopt-a-tude, we'll be running responses to the show from different angles. We'd like to invite the adoption community to talk about this together.

First up is adoptive parent Lisa, the Caucasian mother of a Chinese-born daughter. Posts by an adult adoptee and a birth mother will follow this week.

I came to Find My Family already grappling with a whirlwind of emotions. A recent discussion on Lisa Belkin's Motherlode blog opened my eyes to the very real pain adult adoptees may experience. Watching the December 7 episode of Find My Family last week, I felt I understood the emotions expressed by adult adoptees Kari Spencer and Jennifer Curtis—and that's not just because of the recent discussion on Motherlode

I've seen some of these same feelings reflected in my 9-year-old daughter's eyes, if not her words. The sense of abandonment. Of feeling tossed aside without explanation. The potential for all that to gnaw away at one's sense of self worth.

I understood too the longing: "I deserve to see where I came from." And sadly, as a single mom raising a daughter who's an only child, I've spent more than a few sleepless nights worrying whether my daughter will feel "alone in the world"—as more than one adoptee on the show articulated. In truth, the show made me long all the more for the possibility that my daughter might someday find and connect with her Chinese kin.

So, on the one hand, the show made me question again the wisdom of closed adoptions. The bottom line is blood relations are family. You don't cease being "family" just because you're not there. Adopted or not, we all have far-flung family members. Is there a draw there? The possibility for that sense of kindred connection? I'd be lying if I said no.

The truth, for me personally, is that I think if I were Kari Spencer's adoptive mother in the first story aired on last Monday's show, and Kari Spencer's birth mother had—as she claims—returned within those first, very early (three) months and demonstrated that she and her husband had both the desire and means to raise Kari, wrenching as it would have been, I think I’d have wanted to give Kari the chance to be with her biological mother.

The American Adoption Congress highlights the issue this way:
“The AAC believes that all children have the same core of basic needs, and that these needs can be met most easily when children can grow up in the family into which they were born. Every effort should be made to preserve the integrity of this family. When birth families are unable to meet the ongoing needs of children born to them, however, we believe that adoption provides the best alternative—provided the adoptions are humane, honest, and rooted in the understanding that adoption does not erase a child's connections to the family into which they were born. We believe that those who have lived the adoption experience are in the best position to articulate the importance of these conditions and to bring about an adoption system that is based on them.”
I think the AAC’s focus and priorities make sense. That said, there's a broad range of adoptee experiences and opinions. While it's clear there are a number of adult adoptees who are active, vocal, and angry, I’m curious to know how broadly representative their opinions are. I’d love to see a broad-based, statistically meaningful study that represents the full range of adoptee experiences to date.

In the meantime, as much as I feel sympathetic to the pain articulated by the adult adoptees and birth mothers in Find My Family, I'm also an adoptive parent and—I’m human. So while I understand the deep-seated need to discover the connection and sense of belonging that comes from blood ties, from the sense of having been molded from the same clay, there is another part of me, in my head, in my heart, that feels there are things about Find My Family that are one-sided, superficial, and potentially exploitative.

What individual—adopted or otherwise—doesn’t fantasize about the perfect family, the one that's truly attuned and connected to who we are on a cellular level?

Family is in part based on DNA. But that's the raw material, and it's just the beginning. Family, particularly the intense job of parenting, being the mom or the dad, is about being there, day in and day out, year in and year out, through the good, the bad, the sick, the rebellious, and ugly. It’s a commitment, a bond that grows in the heart and in the wiring that develops in the brain. It comes from living and breathing as a family unit, so much so that you unconsciously share the same gestures, the same manner of speech, the same quirky sense of humor.

It's about the emotional equity, the sweat equity, and, at the risk of sounding crass, the financial equity as well. It's about paying the emergency room bills, the annual doctor's bills, the dental and orthodontic bills. It's about putting money aside each year for college. It's about the puppy in the window, the school ski trip, the camping adventure, and presents under the tree each year at Christmas.

It's not just a climb and a hug on a sunlit hill thirty years later.  

So I’ll admit that when the Find My Family hosts and adoptees kept saying, "That's your mother" and "We found your mother" and "We found your family"—as if these adoptees were still orphaned and alone in the world—I couldn't help but cringe. I wondered what the adoptive parents were feeling as they viewed this footage. Yes. This was the birth mother who had clearly struggled and grieved her lost children. But what about the woman who was there all those years doing all the actual...mothering. Who was she? The babysitter?

I know how subjective and biased I sound as I read what I've written. I think it's the sweat equity talking. But I don't honestly know how, or if I can, disengage from that. The bottom line for me is that, as an adoptive parent, the show made me feel incredibly invisible.

If, broadly speaking and in actuality, adoptive families form a “triad,” the show should try to represent the reality, not just a selective slice, a single fairytale moment in time. Include the full triad. I know this can be sticky. But that’s in part the point—and the reality.

Within my own family, among myself and my cousins, we have more than seven examples of adoption to draw from. They include two international adoptions, two open adoptions, two closed adoptions, and a foster parent who became an adoptive parent. In the case of the foster parent, she only moved to adopt her daughter after four or five years of waiting for the birth mother to overcome her addictions and provide for her daughter. When the birth mother proved unable, she relinquished her claim to “mother” her daughter.

In the case of our family's two open adoptions, sadly, the adoptive parents pursued and tried to maintain the originally agreed-on connection. In both instances, to varying degrees, despite ongoing efforts, the birth mothers dropped away. This isn't to say open adoption is a mistake or a bad idea. It's just to say every adoptive circumstance is different. Families fracture. Pain can result any number of ways. The question is, what "family" will be there to pick up the pieces?

I'll be interested to see what kind of follow-up occurs on Find My Family. Will they choose only those stories that offer a happy ending? I'm sure there will be many wonderful, heart-warming connections and re-connections established. These are wonderful to see. But what will they do if, over time, some of the romance in these newly discovered relationships fades? Real families inevitably entail real conflict.

As an adoptive parent in the trenches dealing with the grit and grind of everyday life, the challenge I grapple with is the everpresent threat of the phantom perfect parent—as much as I know we're all human and that birth parents undoubtedly have their struggles. I’m wondering what Find My Family will do with those stories where the birth parents are found and the adoptee is confronted, God forbid, with a second rejection? This is real life as well. It happens. But then this raises another issue.  Is this really appropriate material for prime-time television?

I'm wary of an opportunistic prime-time reality show competing for ratings that paints a one-dimensional, overly romantic view of adoptees and birth families when the picture is, in reality—like most real-life families—far more complex.


Jane said...

QUOTES From the above Link

"So I’ll admit that when the Find My Family hosts and adoptees kept saying, "That's your mother" and "We found your mother" and "We found your family"—as if these adoptees were still orphaned and alone in the world—I couldn't help but cringe. I wondered what the adoptive parents were feeling as they viewed this footage. Yes. This was the birth mother who had clearly struggled and grieved her lost children. But what about the woman who was there all those years doing all the actual...mothering. Who was she? The babysitter?"

I agree with your sentiment...I think that there are many beautiful adoptive mothers, my own included that truly loves their adopted child..It must hurt an awful lot when reunions happen......

Just MUST HURT a LOT. Adoption hurts everyone, and sometimes I think we need to think of THOSE Adoptive parents that are the very good ones, that love their mine!


"I’m wondering what Find My Family will do with those stories where the birth parents are found and the adoptee is confronted, God forbid, with a second rejection? This is real life as well. It happens. But then this raises another issue. Is this really appropriate material for prime-time television?

I'm wary of an opportunistic prime-time reality show competing for ratings that paints a one-dimensional, overly romantic view of adoptees and birth families when the picture is, in reality—like most real-life families—far more complex. "

I have to agree...but my answer is they WONT air those stories..they never did in Australia..not good ratings..
I didnt bother contacting find my family because I knew that they would never use my story...
They only want happy ever after stories...

AdoptAuthor said...


I appreciate your articulate honesty. What I get the sense of, as I read your reactions, is a huge dichotomy - a conflicting duality of feelings.

You say you understand and agree with the AAC statement and feel the pain of loss and the need to connect of adoptees, yet… you feel left out, as if a reunion would cast you aside as a babysitter...a not an uncommon concern of adoptive parents, albeit an irrational fear.

I have been involved in thousands of reunions and read about a thousand more over the past 30 years. As for the “statistical results” you long to see, they are all over the place, like any interpersonal relationships, prime example being marriage. Are marriages good or bad? Are married people happy, content or not? Is marriage stable, secure and faithful? The answer, of course, is that some are and some aren't, and there are all degrees of happiness and contentment and all kinds of arrangements within the framework of marriage.

Reunions, like any other relationships, are as unique as the people in them.

Adoptive parents are not included in reunions because it is not about them! You no more belong at your daughter's reunion than you do on her honeymoon! Interestingly, however, the one episode I saw - the one with Ashley who finds a brother and sister - they DO show her siblings visiting her at her adoptive parents home. This is as it should be. These are now extended family members and should be welcomed as any other extended family.

Lisa, it is not the sweat equity which makes you feel angry - it is your fear and your insecurity that blood really is thicker than water. It’s your insecurity that this child is NOT blood related to you as you would like her to be; did not come from your body and does not have your DNA. These are YOUR issues and ones you need help to overcome so that you do not inflict them on your child and create feelings of indebtedness and gratitude on top of those you already recognize: the abandonment and identity issues.

What troubles you the most was the show referring to the original mothers and father and siblings of the adoptees as what they ARE: mother, father, sisters and brothers. We need no more fight for such linguistic titles as we need to fight over the children themselves. To truly love an adopted child is to love, accept and embrace fully all of her kin. That’s what they are and the fact of her adoption does not re-write that biological truth of kinship no more than it changed her hair color. Have the confidence to believe that the "sweat equity" you put by in by virtue of being able to "be there” in ways that your child’s original mother was not, is shared by your daughter.

A mother is always a mother – even if one subsequently acquires a step-mother or if your mother dies. She is still your mother. She may be loved dearly or not. Some people feel far more attachment to a step-parent than their biological parent. Neither distance nor death, nor time apart, erase or change that reality. They are mother and father…but adoptive (or step) parents can still be Mommy and Daddy!

Lisa, many mothers love more than just the one child and our children have aunts, uncles and grandparents that they love without taking anything away from Mom and Dad. Why would her having yet other RELATIVES in her life be any different? Unless an adoptive parent has been abusive - emotionally or physically - they have nothing to fear when their adult child reunites. No more to fear than when that adult child marries!

I pray you find help to deal with your not uncommon insecurities so that you can give your little girl the gift of not feeling guilty about loving all the people that created and love and care for her. Adoptees – like children of divorce- need Not to feel in a loyalty bind but allowed to love all of their parents because love is not finite but abundant and a renewable resource.

Mirah Riben,

mommycares said...

Good one on Adopt-a-tude - it helps a lot!

We clearly share similar parenting experiences and views.
I've been reading one that I'm hooked on -
I have a feeling you'd get a lot out of it.

Incredible job on your blog; keep it up.


AdoptAuthor said...

PS Despite the costs of adoption, neither sweat nor financial equity makes being motherhood about ownership. Read or re-read Kahil Gibran's "Your Children"

m said...

"Bottom line for me is that, as an adoptive parent, the show made me feel incredibly invisible."

Well... doesn't that apply to the birth-mother for the majority of her life UNTIL reunion?

Isn't the birth-mother treated as though her feelings are invisible?

Isn't society already so one-sided regarding the image of adoption?

Martha Nichols said...

Great, thought-provoking discussion here. Thanks for the links and kind words about Adopt-a-tude.

Mirah, your comment made me realize something that probably seems obvious but still struck me: the insecurity that all the members of the triad feel, for various reasons. I am well aware of my insecure feelings as an adoptive mom, although those have eased over time as the love I share with my child has taken solid root. But it seems that each of us, in our separate corners, grapples with whether we're loved enough.

I'd like to keep talking about how we can make all of us--adoptee, birth parent, and adoptive parent--feel more secure in who we are and the roles we play in our families' lives.

It's also true, as m notes, that adoptive parents have tended to rule the media discussion, possibly because some are upper middle-class professional writers or adoption industry "experts" who are plugged in to the press.

When it comes to the depiction of adoption in "Find My Family," though, I think Lisa is very right to examine what the show (not the real, living existence of birth parents) makes her feel. The difficulty I have, too, is not with showing heart-warming reunions. It's that the show doesn't reflect the unique circumstances of families that Mirah and others note.

This show could have been called "Who's My Family?" or "Where Is My Family?" While I would want it to focus on birth parent-adoptee reunions, why not run an occasional episode from the adoptive parent POV, expressing the insecurity we feel? Why not run an episode that depicts an unsuccessful reunion or the actual difficulty of searching? The representation of adoption and family life in general would feel so much richer and complex then.

And while it's quite true, Mirah, that parents or other family members don't belong on a honeymoon, they rarely keep their mouths shut up to and during the wedding ceremony. In fact, as a magazine person who knows how stories get shaped, I'd have to say that much of the human drama lies in what other people think and in their disagreements. With "Find My Family," there are so many missed opportunities.

Anyway, stay tuned for Adopt-a-tude's other posts on the show this week...

Lisa @ Pack of Three said...

Wow. I so appreciate everyone's time, consideration, and thoughtful comments. I hope to see more.

Mirah, I think we're in greater agreement than you may believe. Perhaps you misunderstood and/or I didn't make myself very clear.

It wasn't the reunion I had an issue with. I was touched by it and truly hope someday my daughter has that same opportunity to connect with her birth mother and/or family. And if she wants me to be present for that, that's great. And if not, I would respect and understand that as well. Either way, I would be so happy and hopeful for her. When you love a child, you want the best for them. You want them to feel happy and whole.

Your reference too to Kahlil Gibran's "Your Children" is dead on and ironically, after writing this piece, I thought of this very piece. I believe our job as parents is to facilitate, guide and help our children be the best that they can be, launching them, helping them live the life that they choose.

When I mentioned the financial part of parenting, I was trying to use it as one very concrete example of the sweat equity parenting requires. To me, money is a very concrete symbol of one's life earnings, one's life energies. There's a finite amount. How we "spend" those energies says something about how we give, what we share. No one owns their children. But as parents, we assume responsibility, accountability, liability. That's huge. I was trying to illustrate some of the very concrete ways we apportion our life energies when we make the choice to parent.

Finally, perhaps most importantly, it wasn't the actual reunion between adoptee and birth mother I objected to. Not at all. I was touched to see these reunions. What I questioned or struggled with was the show's *portrayal* or definition of what makes a "family."

In the case of adoption, isn't it time, isn't there a way, to acknowledge, honor, and include every member of the triad?

Wouldn't that in truth be the best, healthiest thing for our children?


Mei-Ling said...

"In the case of adoption, isn't it time, isn't there a way, to acknowledge, honor, and includes every member of the triad?"

The birth-mother is typically shoved into the back corner *because* she did not raise her child. That is already indicative of a power position in balance from the adoptive side.

Personally, I believe Find My Family is far, FAR too simplistic. It's actually quite disheartening to watch as a TRA because it's just too simple and doesn't take into account the hurdles that many domestic reunions actually face beyond the "I'm sorry!" "No, you did the right thing!" exchange.

The birth-mother is not honored because she gave up her child. The birth-mother is not respected because she "abandoned" her child, whether intended or not.

Far too often, from what I have witnessed in 3 years' worth of blogging and discussion forms, the birth-mother gets little to no respect - purely on the basis that she surrendered her child to another set of parents.

Don't get me wrong - the adoptive family is real too. Of course.

Yet, after seeing things like this show, adoptive parents say "Hey. Wait a minute. What about us?"

The adoptive parent's perspective is the one that dominates adoption articles, memoir reviews, adoption media, and so on. What about them? They dominate societal culture about what adoption "should be like." They say it's unfair because they do not get a voice or appearance.

I fail to understand this sentiment because quite frankly, if one takes a good look at ALL the adoption media out there and which voice IS, in fact, represented the most, it is that of the adoptive parent.

Adoptive parents DO have power. Not ALL of it, but MOST of it. And in saying that, having "most" of the power - whether it be emotional or political - is more power than the voice of the birth-parent and adoptee combined.

And there is the power imbalance.

Of course, some adoptive parent will probably lurk here, read this and go "Hey! You're not being fair, Mei-Ling! We don't REEEALLY have all the power."

Well, in your attempt to deny what the media presents and what the overall representation of what adoption "is like" from adoptive parent bloggers and media articles... again, your voice overrides mine. Your statement says, "You're being unfair. Of *course* we don't have all the power!"

But your statement in itself is a denial of the ability to see that politically, yes, you DO have more power than the other two positions of the triad. You DO have more political and emotional power in the big picture of adoption.

If you attempt to deny or defend the idea that adoptive parents do NOT dominate adoption discussion, then perhaps you need to take a closer look into the blogosphere or the media. The adoptive parent's voice DOES dominate adoption discussion.

It's whether or not the dominating voice takes control in a GOOD way that can take into account adoption ethics rather than just doing the knee-jerk reaction of, "Well, we don't have all the control either!" Margie at Thirdmom is a particularly good example of this.

Sure, she's an adoptive parent. But she digs into the tough stuff. She asks herself honest question about her kids' first parents. She doesn't say "Well it's not all about us either!" in a knee-jerk defensive reaction. She *acknowledges* that the adoptive parent's voice typically dominates adoption discussions. She *acknowledges* the difficult issues of adoption and understands that it's not about defending her right as an adoptive parent.

By writing out a defensive response and denying that adoptive parents have the most influence in adoption discussions, you still strive to make your voice heard more as a defensive retort against what I have said rather than taking a look into WHAT I have said.

No wonder that so many adoptees feel like giving up discussion sometimes...

Lisa @ Pack of Three said...

Btw, I also wanted to acknowledge Amy's comment. Thank you so much for your kind words.


Dana Seilhan said...

I'm getting a little tired of people portraying adoption like it's the birth mother rejecting the child. First off, the term "birth mother" is offensive. It sounds like "brood mare." I'm not a walking uterus to make a baby for someone else. I had a child. I'm a MOTHER. Funny how all a man has to do to "father" a child is have a bit of adult fun with a woman but to "mother" a child you have to do all the child-rearing? How does that work? It's a genetic relationship too.

I mean, is an aunt or a grandmother who raises a niece/nephew or a grandchild now that child's "mother"? I don't recall that most of them refer to themselves that way. My former in-laws who adopted my son certainly don't refer to themselves that way. Why? Because it's a certain kind of relationship, one they are NOT replacing.

Is the head of an orphanage a mother (of the orphans in care)? Is a teacher a mother (of the students she teaches)? Is a nurse a mother (of his or her patient) while the patient is in the hospital?

No. What's the difference? We mothers gave birth to the children. Yes, it matters, because a baby is not a tabula rasa. The baby knows who its mother is. My daughter sure knew who I was, and she hadn't even gotten a proper look at me yet. When they brought her in from neonatal assessment, merely hearing my voice calmed her.

They know Mother. They expect to be raised by Mother. That's all they know and that's what their instincts demand.

And relinquishment is not the same as rejection. All too often it's choosing what is perceived as the least of several possible evils. I had almost zero support and help from my family when my marriage fell apart ten years ago. My son was almost three and I was suddenly left with scrambling to put my life back together while having almost zero earning power. I didn't want to go on welfare, I didn't want to stick my son in daycare again when I'd probably be stuck working evenings or nights and I was scared to death of parenting him by myself or, worse, having my stepmother always interfering when she didn't want to be a real help to me in the first place.

Found out later what the rules were of the new (at that time) welfare system--I'd have wound up expected to work for free or very low wages while taking home barely anything from the state. Just a few months after I gave my son to his grandparents (at that point, "in loco parentis" temporary custody), two local kids died in daycare vans after being left in them all day by daycare workers. My dad had sent me money when I initially left my husband (whom I'd just turned in for two felony crimes), but years later I realized that had I gone on to live with Dad, not only would it have been another long drive to another state with a small child in an old car, but I wouldn't have gotten any help there either. His attitude was that of many parents of grown children: "I already did my time raising kids and I'm done. I'm not responsible anymore." What do you do when none of your parents particularly like kids, or have serious mental health issues, as my real mom does?

How many first mothers (I like that term better than "birth mother") can tell stories like mine? Or worse? Even much, much worse?

Dana Seilhan said...

Can you call it a "rejection" when no other option was any better? Is it rejection or is it handing over your child to a rescue boat, knowing you have to stay with your ship as it sinks because the rescue boat has no more room?

Would you please put it to your daughter in those terms? You know as well as I do what the political atmosphere is in China. People are fined and go to jail for keeping their daughters. Shoot, they're fined and go to jail for far less. Stand around in a park doing tai-chi-like exercises and you could find yourself in a prison morgue with half your organs missing.

Stop leaving her to wonder why her mother hated her. Chances are real good--I'd say approaching 100 percent--that that wasn't anywhere NEAR the case.

I know there are literally bad parents out there who do hate their kids. But they don't typically give them up for adoption. Typically they keep them, for whatever twisted reason, and then beat them up and kill them.

Don't lump us all in that category just because we can't send our kids on ski trips like you.

Thanks in advance.

Mei-Ling said...

Dana: It was me who tried to add you to YM - although of course I understand you were being cautious in rejecting my add request - probably didn't even know who I was!

Just wanted to thank you for commenting here. :)

Lisa @ Pack of Three said...


I appreciate your comments. I have gone to great lengths to help my daughter understand the situation in China, to help her know her first parents were most likely coerced, that they most likely had no choice, and what they did had to have been, is most likely still, painful beyond words. I have never used the word "reject." If you visit my blog, you will see how I've tried to help my daughter process her story. I'm human. I'm learning as I go. I try to be inclusive. I've never wanted my daughter to feel she had to choose families, sides, loyalties.

And to Mei-Ling,


I was responding and sharing my thoughts specifically to "Find My Family." And while I'm pretty well read and pretty conscientious about educating myself of course it's an ongoing process. I wouldn't claim to be an expert on the broader dialog that's happening on the web.

I do hear your point however and would guess you're probably right that adoptive parents are in a more powerful position compared to birth parents and adoptees. In our defense, I'd say we sign up for a huge responsibility, the love, care, and feeding of a human life -- and hopefully only in those cases where the family's integrity truly can't be preserved. With that responsibility, there is great accountability. Also, great vulnerability.

Perhaps we're vocal in part because we care, because we commit such a huge part of our hearts and lives, every day. That doesn't give us the right to deny the first family. But would you in turn deny us a place in our children's lives? Are we not "family" as well?


Martha Nichols said...

Thank you, Mei-Ling and Dana for your honesty and for getting it out there.

Mei-Ling, you are very right that adoptive parents control the discussion of adoption in the media. There is a power imbalance, partly due to social and economic class, partly due to white privilege when APs are Caucasian. In the adoption community, we do need to talk honestly about this power imbalance. It's the ethical thing to do. It's what turns adoptive parents into allies once adoptees seek reunions with birth parents rather than remaining emotional obstacles. For far too long, adoptive parents have only been talking to each other.

I also agree that "Find My Family" is too simplistic in the way it portrays the experience of all members of the triad. That's why I wanted to open this to community discussion.

Dana, I like the term "first mother" better, too. And you bring up such a crucial point about the lack of economic options for birth parents and what forces are at play in relinquishment.

I've always believed that the real feminist issue has been to provide safe, high-quality daycare to all mothers. What a difference that would make in this country and to the choices available to women who need to care and financially support infants.

I will say in Lisa's defense that I believe she has very openly and honestly talked about her daughter's missing mother with her child, as well as political inequities in China. I invite you to read past entries in her personal blog--Lisa @ Pack of Three--about some very difficult conversations.

Please keep the communication lines open.

David Biddle said...

Nice to see folks grappling with all these issues. Finally, folks are talking about what adoption means both personally and on a broad scale.

Mei-Ling's points are very important about the sort of natural politics that befalls adoptive parents and birth moms. In the triad, the only leg that has a "normal" frame of mind is indeed the adopting parent(s). Also, for all intents and purposes, the adoptee and the birth mom essentially have no choice in the entire matter. Adopting families are indeed near to fully empowered in comparison -- although Martha's comments about uncertainty and vulnerability are important here for sure.

One thing I feel strongly about is that many (most?) birth mothers typically aren't rejecting their babies. They give them up because they know it's the best thing to do. I don't think I ever felt that my "mom" dumped me on the world. I understood full well the probable situation. I don't know if any of my adopted friends growing up every felt differently.

One other thing I would note in comment to Mei-Ling's points about the power situation and adopting families is that this is probably as it should be. The more society supports the connection between adopting families and their adopted children, the more that relationship is empowered to be strong, compassionate, and loving.

Mei-Ling said...

I can't copy and paste comments to respond to them. So I'll respond to the individual comments in a more general pattern.

Lisa: You said "in our defense." Yes, you take on the responsibility of caring for a child. But isn't that something you WANT to do? Isn't that the whole point OF adopting?

Hmmm... how do I phrase this...

Yes you are family. Duh. Adoptive family is family. That shouldn't even need to be a disclmaimer in most cases. But see - I point out that politically and emotionally the first mother's voice is silenced because she relinquished, and then you bring up the adoptive parent's side again. It switches the spotlight from the firstmother's "silenced" voice to you. It STARTS at acknowledging her, but then ENDS with the indicating statement "What about us? Don't we count?"

Well... yes? The point is that this is a silencing attempt again. Where do adoptive parents NOT have their voice spoken? Where do adoptive parents NOT dominate?

Reunion can use your support. Search can use your support. But it's not about you to the extent that everyone should take caution and tiptoe around you.

"With that responsibility, there is great accountability. Also, great invulnerability."

What is there to be invulnerable about? You are your child's mother by adoption. You are raising your child. Her other mother is somewhere in China and will probably never see your child again thanks to the cultural distance, anonymity laws and social customs that condemn abandonment.

How are -you- vulnerable? You have the MOST CONTROL.

Are you shadowed by the responsibility of a ghost mother? Are you worried your role will be undermined when The Search opportunity arises? Does the label "other mother" scare you?

Can you please elaborate?

Martha: Thank you for pointing out what I've been trying to express. I don't see the need for adoptive parents to get defensive. Far too often the discussion revolves among them and in between them.

David: "in the triad, the only leg that has a 'normal' frame of mind is indeed the adopting parent" - THANK YOU.

Some adoptive parents will say "Well I didn't really have a choice! I had to abide by government regulations! I had to sign xx papers over the course of 3 years and expose all my personal life."

But they VOLUNTEER to do it so they can adopt. This act of being ABLE to volunteer is more of a choice than ANYTHING the adoptee or firstmother have been able to do.

David, addressing you directly here now - I'm not sure why you'd want the political power imbalance to remain with the adoptive parents. If the adoptive parents have the most influence in adoption-related discussions, then why do they need to have more power?

What's wrong with having a "strong, compassionate and loving" relationship with biological family parents?

Mei-Ling said...

Oh my god. Sorry for the typos! >.>

"What is there to be invulnerable about"

should be "What is there to be VULNERABLE about".....

I need to learn how to type.

David Biddle said...


My point about the adopting family being the most empowered here is that as long as we're talking about raising children, adopted children, I have no problem with the idea that the relationship between the parents and child is considered the most important piece of the Triad.

Adults who are adopted is another issue. First parents (I love the term "first" AND as a male, feel it's important to talk, at least in theory, about parents and not just moms...sorry if I hit a nerve here), and the adopted become a wholly different beast.

I believe my post on Find My Family will go up within the next 10 days. Let me just say that as an adopted 51 year old, I love my first mom and my second mom in totally different ways and I am so lucky to have known both women. They are strong, good, intelligent, loving and amazing women -- each in her own right. Before my second mom passed away, I told her about finding my first mom. She was happy and supportive. I wish she could have been there with me when I finally found my first mom. She deserved to be. Not because of the so-called "sweat equity" (not sure I would ever comment on that notion, thank you very much), but because she loved me as her son and I loved her as my mom. I know my first mom will always feel that she would have liked to meet the woman who raised me. Be it known that when my second mom died, my first mom was the first family member I talked to after I called my brother and my sister.

Long live The Triad! Long live Love!

Lisa @ Pack of Three said...

Hi Mei-Ling,

From your position I can imagine you see adoptive parents as powerful and in control and, in relative terms, we probably are. That said, in other ways, it doesn't feel that way. Our children are unique individuals and human beings. They mature and become free agents with free choice. So, yes, we are vulnerable.

I'm curious -- and hope you don't mind my asking -- are you a parent?

I ask this because I think to be a parent is, almost by definition, to be vulnerable. Adoptive and first parents are, in their own unique very different ways, all the more vulnerable. And I don't mean to minimize or negate the pain of first parents. I can only begin to imagine the pain of that loss.

All I can do is speak my truth, what I know, as an adoptive parent. Day in and day out, night in, night out, we care, yes, often exhaust ourselves for our children. At the same time, we (along with our children sadly) are confronted with everyday reminders we're "not really" our children's "real parents." My daughter and I have experienced this in a myriad of places, in the school yard, on the playground, at the airport, even in the doctor's office ("So, Ma'am, do you have any children of your own?") People say things unwittingly, unknowingly.

What do I, can I do except be the best parent I know how to be? But there's the rub too.
As a parent, part of my job is to set appropriate boundaries to keep my daughter safe, to prepare her for life. That means at times I have to be the "bad guy," the disciplinarian, the authority figure. Of course, it's my child's developmental "job" in turn to rebel and push away from my authority. What teen doesn't, at some point, resent or reject their parents? What 30 year old isn't, on some level, processing the various ways their parents disappointed them? It's normal. Given all that, how many adoptive moms haven't heard the charge, "Well, you're not my real mother!" My connection to my child is always qualified by the everpresent question mark that hangs over our legitimacy as a family.

Ironically, I'd venture to say that question mark, that vulnerability, has motivated me to become a better, more compassionate, more inclusive parent. I'm aware my daughter can reject me, leave me, once she is mature and grown. I can't claim blood ties. All I have is my love. I'm not made of stone.

So yes, Mei Ling. I am vulnerable. I love my daughter with every fiber in my being, with all my soul. And no, that love doesn't have to, shouldn't by any means, have to exclude a strong, compassionate and loving relationship with biological parents. Fact is, I'd argue the opposite.

Would it be wrong to say we're both arguing for the same thing? Inclusion for both sides?

Thanks for hearing me out.

Lisa @ Pack of Three said...

Hi David,

I love reading your comments. I would love nothing more than for my daughter to find a loving connection with her first family. We are such a small family currently. It would make me incredibly happy to know she had that many more people to connect with, to feel loved by, to call family. Yes, even if she ended up moving to China someday. If it made her truly happy, it would make me profoundly happy as well. (There's always SKYPE and the Internet to stay in touch!)

David Biddle said...


Your statement about the vulnerability of parents is so right on! Oh, the stories I could tell! (Marion and I parent three boys: 21, 18, & 14). I'll spare you though. Everyone should deal with their own parentoias...

I must say, when I get a chance I hope to write a strong piece here in Adopt-a-tude about the power of LOVE and what being any part of the Adoption Triad can teach us. I'm amazed that I'm just figuring it all out now at my tender age. But I am, and what is most amazing to me is that the end result is the deep well of love and passion for living that I find in myself so late in life. It's like I'm just waking up to something that I've known all my life. Given love, support and tender hearted parents, all adopted children have something very special in them that can be a gift to their families and friends way out there in their adult futures. Have faith and trust your heart as moms and dads.

Martha Nichols said...

David, you must write about the power of love. Your comments are beautiful, as are Lisa's about her love for her child, and the comments of everyone else here about their need to connect and search and find their families. I am very moved.

Lisa, yes, I know just what you mean in terms of the ever-present sense that the legitimacy of blood doesn't tie us to our kids, only our love. Of course maybe this a lesson every parent needs to learn: children grow up and away and find their own lives and meanings.

Every once in awhile I grimace and force myself to acknowledge the notion that my son may grow up and move back to Vietnam precisely when I'm old enough to feel I need some taking care of myself. But it really is his life, and that's the gift I want to give him--the desire to explore whoever he is and to connect with people in his birth country and elsewhere who feed his soul.

(Mei-Ling, I'm pretty sure you have a child, and that you do know what this feels like as a parent. I think adoptees like you and David who are parenting bio-kids have a lot to tell us about what making a family means.)

Mei-Ling said...

Martha: If you are referring to Mei-Ling Hopgood (I know she is another TRA who referenced the birth of her biologically-related child in her memoir), that's not me. I'm a different Mei-Ling. So to answer Lisa, no, I am not a parent.

SustainableFamilies said...

I'm having a little trouble getting my comment through. I've posted it on my blog.

SustainableFamilies said...

I understand the pain of feeling like your going to lose the child that you put all your love, all of your being, everything inside you into. Because I lost my daughter when she was three days old. I did prenatal yoga. I went for long walks and I sang to her. I got the job that paid (what I found out now was two dollars less an hour than the adoptive mother made). I didn't smoke, didn't drink. I read stories to my sweet baby. I read books about infant massage, bonding, infant development, nursing, organic baby foods. I cooked vegetables and organics and hummed song to my sweet child.

I loved my child with every fiber of my being. I wanted to parent her. I wanted to be there every second of every day. If I could go back in time, I would undo that signature that gives another woman the power to MAKE ME INVISIBLE.

It hurts to be an invisible mother. It isn't right. In hindsight I was not a candidate for adoption at all. I was set to parent and it took my adoptive parents every psychologically damaging technique they could come up with to convince me that single parenting would in and of itself destroy my daughter and that nothing I could do would ever be "good enough" as the adoptive parents.

They won.

I just want to stop as many women as possible from feeling like they need to turn themselves into invisible mothers.

I want to stop women from being excluded from their childrens lives, simply so the child can have a bigger house, more money, and a two parent home.

(My daughters adoptive parents divorced when she was two, so so much for that whole reason to place.)

People like me are placing all the time. I talk to them, I see them place, and there's no drug addiction, there's no history of abuse. There's no dangerous schizophrenia. The majority of the women who place are these nice college bound, or currently in college girls who seem well put together and perfectly capable of raising their children.

Anyways, now I'm just rambling, but since you were rambling about what it feels like to be invisible in reunion, I thought I would ramble about what it feels like to be invisible and powerless in your childs entire life, a life that you would literally cut off your arm to be a part of every day. I would do anything to be the one there being there "doing the work".

And yes I am a parent and yes I know what the work of parenting is. If I could sign up to have my arm surgically removed without anesthetic and I would get to be in my daughters life every day, I would have to think hard about it, but I would do it.

The sweat equity is a privilege. You kept the child all to yourself their whole life. Let them have their moment for their relationship to be all that matters... just like you did for 18 years. You were just fine with being excluding the first family all that time. What if they had been willing to help?

What if you had said, hey this parenting thing is really hard, biological mom, do you think you give me a hand? Could you take over two or three nights a week while I get a break from this parenting stuff?

I bet the biological mother would have been willing to smash herself into a wall for that opportunity. But see, you don't WANT to share. Because it's not really work is it? It's a joy even when you're exhausted and you can't remember if there ever was such a thing as a "full night sleep" and the crying and whining is exhausting and you can't think straight... but you look into those beautiful eyes and it's all ok.

It's all a joy.

It's not really work. The sweat equity is something you kept for yourself, because it's a miracle to experience. Can you step back now and share the spotlight of mother with a woman who is in pain that you really can't fully imagine?

Martha Nichols said...

Mei-Ling, thanks for the clarification. I'm happy to meet you.

SustainableFamilies: I'm glad your very moving comment made it on to the blog the second time. Does it help to know that your pain is heard? I'm not sure that it really can, but it is heard, it means something to me, and I take it in as an adoptive parent.

And you are right, to be manipulated into losing the child of your body is a terrible thing. This is where all of us in the adoption community, but most especially adoptive parents, need to abide by the ethical right thing. That's true internationally, where birth parents may be unwittingly separated from children they don't lose, and it's true domestically.

You speak of an open form of adoption, a kind of sharing and extending of family boundaries that doesn't exclude birth parents and best serves the child, that many of us wish for. There are plenty of obstacles, too, from the specific personalities involved to international borders, but I do believe that somehow we need to open our hearts, not close off possibilities. Thank you.

Martha Nichols said...

Looks like I have trouble typing, too(!) That's "birth parents may be unwittingly separated from children they don't want to lose..."

Lisa @ Pack of Three said...

Thanks for clarifying Mei-Ling. I appreciate your responding.

I realized after my last comment there's another vulnerability I should mention as an adoptive parent (since you asked.) It also provides a partial response to SustainableFamilies' comment.

(To SustainableFamilies I want to say up front I'm so sorry to hear of your story and your loss. I can't imagine what you've been through. I’d never presume to convince a mother to give up her child. I can't even stomach the idea. I'm also coming to appreciate what a broad range of circumstances adoption can cover.)

I never had the chance to meet, much less have a conversation with, my daughter's first family. My daughter was almost 18 mos. old by the time we were introduced. She was a waiting child in an orphanage in China since she was 7 days old. This was at a time when China's orphanages were being flooded with children, sadly, due to the government's harsher enforcement of the one child, one family policy. (I researched and wrote about these circumstances in my blog.) The orphanages were overwhelmed. Children were dying for lack of resources to care for them. The government opened the door to foreign adoptions as a desperate means to hide the problem from China's citizens while also tapping foreign funds to staff and equip the orphanages.

I mention this as a way of saying there was never any chance for me to have a dialog with my daughter's first family. In fact, there was no information on my daughter other than a highly superficial health exam (i.e. heartbeat? yes. lungs? strong, etc.) I had no health history, no family history, or any other meaningful information. I had a picture of a somber looking child with a crew cut.

As for me, I wanted the chance to love and raise a child who needed me. I knew there were children in China who needed care and loving homes. I knew too, as a single woman, I was ineligible to adopt in the US while in China I was told they didn't discriminate. It seemed a good fit while it was also a leap of faith since, in China, a single central government run organization takes your application and assigns you a child. You have no input, no say. You sign up. You fill out the paperwork to prove you're worthy and, after several months of waiting, you're assigned a child. Period.

I met my daughter and, within an hour or two of meeting her, signed the required paperwork while my heart throbbed wildly in my throat. As we traveled about China making the obligatory stops, I began to notice something wasn't quite right. By the time we arrived home and I brought her to my pediatrician and visited the "experts," she was diagnosed as "profoundly delayed." At 18 mos. her developmental abilities ranged from 4 to 6 mos. She was hypotonic, didn't know how to rollover, didn't have the strength to rollover and, lacking fine motor skills, could only rake at small objects. The doctors and specialists speculated she had either neurological or chromosomal issues. They recommended 7 hours or more of therapy a week. They weren't sure if she would progress or not.

I was terrified. But she was mine and, after getting over the initial shock and fear, I knew I'd do everything and anything I could to help her. Today my daughter is a healthy, vibrant child and, yes, she is both a joy and a gift even while it sometimes takes everything I've got and then some to keep up with her.

I offer all this not to negate the pain or loss first parents experience or to pat myself on the back. It's to say adoptive parents make a whole life commitment regardless of the cost or the journey and, yes, sometimes that leaves us feeling pretty vulnerable. Is that a reason to exclude or deny the child's first family? No.

magicpointeshoe said...

To be honest, your feelings about the show leaving adoptive parents out rubs me the wrong way. You say that I matter to my son's life but then very clearly remind everyone in the room why I am not and never will be his mother and how his parents have earned their pedestal and by my own choice or not my inaction in his life is not of balanced value.

My value to my son has always been led in discussion by his parents who raise him. His curiousity or hesitancy to ever seek me out with be based on a lifetime of internalizing what his parents thoughts and feelings are. Please realise that your pedestal already exists and is a guilded throne. There is no need to verbalize why you earned it, when society in whole blesses your intentions instead of chastizes you without even realizing it.

Sarah said...

I must admit, I'm unclear about how asking to include one member of the triad (be it the adoptive parents or the first parents) equates to a claim that the other parental member of the triad should be excluded.

There seems to be some sense that parents, of whatever form, can't be in the same place at the same time. That simply isn't true.

Yes, adoptive parents generally have more power than first parents do based on all those reasons people have stated.

And yes, the notion of biology being more central to family than anything else is also dominant in our society.

And yes, society also seems to reify adoptive parents in many cases (certainly not all) as "saviors" of their children -- despite the fact that the vast majority of people involved in adoption know this is not the case.

And yes, that reification comes because adoptive parents are raising a child that "isn't their own" -- thus again undermining that connection.

This goes on and on. And the power goes both ways. Perhaps not with the actual voices of first parents, though often not with the actual voices of adoptive parents either, but definitely with the notion that first parents (honestly, first mothers -- there is seldom discussion of first fathers at all) are THE parents. Adoptive parents are just the ones who came along to save the child and society, but who we all know can never REALLY have a "family" relationship with their child.

So, considering this and considering we are all, in fact, in this together in some way, whether we know each other or not, whether we know all the members of our particular triad or not, why is there this incessant need to negate and attack and accuse?

My being an adoptive parent and talking about what that means to me in no way negates anyone else being a first parent and what that means to them.

We are all having the same conversation -- perhaps it would help to actually listen to each other rather than assuming we know what everyone is saying or putting words into their mouths or feeling like the fact that someone else is talking forces you to be quiet. It, simply, doesn't.

Lisa @ Pack of Three said...


Thank you for offering a voice of reason. I'm in agreement with you.

Funny thing is, after all the debate here yesterday, I decided to watch "Find My Family" last night again, to test my thinking and my reaction. Interestingly, I found the two episodes from last night seemed more balanced. I wondered if I'd changed my mind about the show. I thought on it, and realized what I really objected to and was put off by, was the sensationalized, one-dimensional way the show has been promoted and sold -- as if these people had no family at all. I recognize this is the nature of primetime television and the audience it appeals to. But now, having gotten past the crass, one-sided promotion (or least now that I've been de-sensitived,) I found the stories from last night quite moving. I also appreciated the fact there seemed to be a little more of an attempt to at least reference the adoptive parents existence and their role in the story.

I don't want to demonize or diminish anyone and of course I in turn don't especially like to be demonized or diminished. I'd personally prefer a balance, presenting the whole picture that is adoption. I understand it isn't always but, despite the losses, it can be a positive, beautiful thing, the gift of life, the gift of family in all its shapes and forms.

Martha Nichols said...

Thanks, Sarah, I'm in hearty agreement. Lisa, you and I must be on the same train! Last night I watched the show, too, and had a different response. I still feel put off by the TV packaging, but I was also touched by the stories themselves.

I want us all talking together in the same room. Is that possible?

Here's the real irony: I was so moved after watching Find My Family last night that I wrote my own reaction for Open Salon and posted it there. It's now running on today's OS front cover as follows:

"Why I Like 'Find My Family': An Adoptive Mom's Take."

Needless to say, my take is more nuanced than the headline implies. But of course I love being chosen for the cover and I'm complicit with my fellow media hucksters.

Anyway, go to Open Salon if you're interested. I'll also likely re-post the piece here, once others have weighed in. Regardless, I'm glad to get diverse ideas out there.

AdoptAuthor said...

"why not run an occasional episode from the adoptive parent POV, expressing the insecurity we feel? Why not run an episode that depicts an unsuccessful reunion or the actual difficulty of searching?"

Because that's not what the show - or reunion - is about!

Why don't the bachelor shows show couples who divorce?

What's an "unsuccessful reunion"? Whatever anyone finds - they have found their truth. That makes every reunion a success. The relationship that follows? that's another story all togther. We don;t know how any of joyous reunion shown will play out.

As for imbalance of power:

The average relinquishing parents has an annual income below $20k. The average adopter has an average annual income of approx. $70k. More and more parents are losing their children worldwide and domestically as the economy worsens. Adoption loss is always the result of POWERLESSNESS, or as Rickie Solinger has said: "Adoption only exists on the backs of resourceless women."

Adopters have legal representation to handle the adoption. Relinquishing mothers either have none, or have one that is paid for by the adopters (as in the sadly realistic scene well portrayed in Juno.)

Do you see any balance or equality here?

For decades, whenever I mention that my interest and advocacy is in the field of adoption, the first reaction is almost always: "OH, yes...adoption is such a wonderful thing" I sometimes do and sometimes don't bother telling them that ti wasn't wonderful for me or most mothers fr whom adoption represents a LOSS.

The other frequent comment is that their sister-in-law, or their cousin, or their sister's cousin's friend is trying to adopt and "isn't it a shame" it's so hard. And the media always depicts this sad side of adoption.

When I mention I have written two books about adoption, I am asked: Are you adopted? NO. Do you have adopted children? No. And then there is dead silence.

Is it because no one can even think of any other personal connection to adoption, or is it because they are too uncomfortable to even ask if I could possible have done something so horrendous? Or, is it because they are looking at a woman who is like them and doesn't fit their stereotype of a "birthmother'?

Life is seldom equal or fair, and adoption most certainly is not.

AdoptAuthor said...

The show is serving a very good purpose, IMO, It sparked this conversation, and hopefully others.

Martha Nichols said...

I agree, the conversation has been really good, and I feel that I understand more than I did when it started. I also am very much in agreement with you about the power imbalance in the adoption triad--adoptive parents are in a more privileged position, in general. It's one of the reasons that I want to hear from and publish diverse voices on this site.

Here's what makes the discussion so interesting yet difficult to resolve: No question the power dynamic exists; but not all adoptive parents are white and upper middle-class, and certainly many of us also feel personally our own lack of control.

I've come to have warmer feelings about Find My Family, although I'm still concerned about the corporate interests that shape these stories. I am glad the many adoptees and birth parents feel validated by the show--and it's good for all of us to know that this is true rather than just accepting the criticism of adoptive parenting sites.

AdoptAuthor said...

Lisa - You agrred that parents don't go on their kids honeymoon, but said they are includied in the wdding planning.

But if you were doing a show about the newlyweds and their honeymoon, then it would not include the feelings of anyone other than two newlyweds.

Why are you so veste din having adoptive parents feelings involved in the lives of their adult children?

In addition to all members of an alleged "triad" being insecure, we also all share major control issues!

Lisa @ Pack of Three said...

To AdoptAuthor,

I never said anything about parents going on their child's honeymoon or about a parent's inclusion in wedding plans. Reading through your comments I must confess it feels as though you haven't even read my comments.

I've tried to stay open and hear the different sides in this discussion and, I've learned a lot. But I also, quite honestly, feel I've been attacked for things I didn't say and for motives that don't even fit my situation.

Instead of attacking individual members within the triad or impugning a person's motives, wouldn't it be more helpful to talk about the kinds of constructive, ethical actions we each could take going forward?

Alex S. said...

Quite an interesting discussion.

Martha wrote: "I want us all talking together in the same room. Is that possible?"

It makes me think about the varied ways adoption looks depending on the forum and medium used for discussing it. It looks one way when portrayed by a reality show, another way when text flies back and forth on a blog, another way when inked in a daily newspaper, another when written about on the pages of a glossy. What might it look like with all of us sitting in a circle in a church or temple basement with our cups of coffee on a Tuesday evening, our eyes upon one another, trying to make sense of it all.

autumnesf said...

Amazing conversation here. Thanks to all that have left comments. Sometimes its hard to read, but my quest is to hear and understand all parties involved in adoption. I'm so glad these conversations are happening.

Sandy said...

Very interesting takes from all sides...all important and all valid. I also went to Open Salon and read the post and comments. There was one commenter who Martha replied to but it haunted me so I have gone back and copied your response.

Arlene, good to hear from you. I do agree with your belief that "there's more value in learning to live with loose ends rather than trying to wrap everything up in a neat package for that elusive 'closure.'" Yes. And yet the travels of the people on Find My Family do seem sparked by something very basic."

I wish to elaborate on why 'learning to live with loose ends rather than trying to wrap everything up in a neat package for that elusive 'closure' is not valid when discussing the need adoptees have to search. That is not the intent for many adoptees. If it were that simple it would have been done. There are many reasons that all intertwine that make this most basic desire never completely silent. The need to search goes so much deeper.

The need to know what paths our ancestors followed. The need to know what choices they made along those paths and what the outcomes of those choices were...we are who we come from. Our strengths are their strengths, our weakness theirs too. That information is passed down generation upon generation via stories, that is lost in adoption, that is a tradegy. To know onces past is to know ones future.

The need to know our story, the why's the hows...that much is pretty easy for most to understand.

The need to meet ones family is self explanatory, just answer it yourself, why do you get together with family - because they are your family.

The need to know what may lie ahead for us medically is another reason. Not to pressing as a child but if you become a parent it rears its ugly head. If you child gets sick or dies, yet another wave washes over you. Once you reach middle age when many hereditary diseases present and you start to have problems that wave washes over you again. Or if you are one who falls through the predicted timeframe for health events and your doctors mistake your illness for something common to your demographics until it is too late, it washes over you again...or if you happen to be one of the 25 million americans diagnosed with a rare disease it makes it that much harder to get a diagnosis and that wave washes over you again. I can't answer what happens when you become a senior but I can guess - you reflect on your life and the might have beens and what you missed out on by not acting when you could.

In the end, not searching means: You are the only one of your kind, there is no back up or connection, you are alone and unknown. No one should have to live their life not knowing where they come from.