Recently, the news has brought us two surprising stories about how DNA companies are connecting people in unexpected ways. “From Strangers to Family” in the Minneapolis Star Tribune (4/8/2018) tells the story of four people who are connected by genetics due to affairs and the secrecy surrounding them. Imagine how you would feel if your parent told you on their deathbed that they were not “really” your mother or father. The information itself can be tolerated. The secrecy about it can be very destructive to people and lead to unresolved feelings of betrayal and curiosity.

The second story is about how a young woman found out that she is genetically related to her parents’ fertility doctor. Closely. Like, he donated his own sperm and never told the parents, lying to them that they had worked with a young anonymous sperm donor. Holy crap! This is a double whammy. Neither parents nor the child knew the truth.

Both of these stories demonstrate that telling your child about being born from donor conception is becoming more of an urgent reality. DNA testing and the unexpected results make telling children about donor conception crucial. This relates to the use of donor eggs, donor sperm, or donor embryos. Whose information is it, anyway? Before a child is born, the information belongs to intended parents. After that child is born, though, it becomes the information of the child and the parents. Here are four fair-minded reasons to tell your child about donor-conception:

• It’s about fairness and what a child has a right to know about their own life.

It is an interesting moment when you realize that it is no longer just about you. This one is about you AND your child. One of the first acts of parenting is anticipating what will be best for your child. This covers the waterfront from diapers, to clothing, to schooling, to their experiences. It is a moment of awe, sweetness, and responsibility. Talking about donor conception begins now, in your mind and heart. Trade places with your child for a moment. If you were your child, what would you want to know? How would you want to be told about the remarkable way in which you came into the world? Transparency and honesty are always better than secrecy. I understand that you may be concerned about others’ opinions about donor conception and how that will affect you and your child.  Put your energy into your child’s needs first. You can decide the level of transparency and boundaries with others later. What we absolutely do NOT want is for your uncle or your neighbor to tell your child about their special story.

• You get to craft the narrative in the way that is best for your child. Ultimately, this is a story of sorrow turned into opportunity, love, and the kindness of others. It is common for children to ask about the day that they were born. This is an opportunity to talk about the moment they were loved in mind and heart. Children like to help others and they love stories about helping. I and other members of the American Society for Reproductive Medicine Mental Health Professional Group suggest that you start telling the story very early in a child’s life and keep telling. Let the story breathe and grow. As Marna Gatlin, founder of Parents Via Egg Donation, says, “Our goal in telling children early and often is that this is something we don’t want them to look back on and remember that ‘Mommy and Daddy told me at our Fourth of July barbecue about an egg donor.’ We just want this to be something they always know about themselves. “

There are wonderful talking and telling books for donor-conceived children. This is a slow reveal. Your first telling is one of many. As your child grows and understands more things about the world, you can add more information. It may be you adding the information, and it may be your child asking for more information. This is an open invitation to talk and discover things together.  You will cover the same ground many times. That’s okay. Marna Gatlin adds, “The more normal you make it, the more normal it is.”

• Children are smart and they figure things out on their own. Children tune into things in ways that adults may be blind to. They are curious. They ask a lot of questions. Repeat, A LOT of questions. They keep asking questions until they get answers. What might a donor-conceived child want to know? Who do I look like? Why am I so good on the guitar or so athletic, but my parents don’t do either? There are specific situations that happen later, like finding out about genetics and blood types, that cannot be fudged. It is better to lead the conversation, to be the open, smart, loving parent, than to have to play catch-up and apologize later for an unnecessary sin of omission.
• It doesn’t feel good to keep a secret from someone you love. This seems self-evident. Secrecy comes from fear and maybe shame about the need to use donor conception in the first place. Secrecy breeds guilt, shame, and apologies that may never quite cut it. As a rule, children have an innate belief that their parents are trustworthy and honest. Children don’t like to be like to be lied to any more than adults do. Give your child the gift of a shame-free family. (Here’s a hint: adults like that, too!)

If you are struggling with how to tell the story, I understand.  This is a new activity. We are all learning about what it means to be donor-conceived, as openness is the way forward.  Do your reading online, on Facebook, or in books about donor-conception.  Check in with your partner and with your own mind and heart as you craft a story you can feel good about sharing.  You can also come see me or other mental health professionals who specialize in family-building using donor conception. Think about this as an opportunity to help your child.  Remember, it’s also about fairness, love, and helping.

I have written this blog post about Mother’s Day dreams unfulfilled for you to share with others in your lives who do not understand your painful journey just to have a child.   Know that I am with you.

There are many mothers you have not met on this Mother’s Day.  You may not know who they are or the ways in which they suffer on this day, this celebration of mothering that is so easy and happy for so many.  They are the mothers whose children are in their minds, hearts, and dreams.  Their babies have died or have not yet been conceived.  They are undergoing painful infertility treatment with many, many injections and no guarantees of success.  They just had a miscarriage or another miscarriage.  Each and every one of these mothers deserve your attention and compassion. But for the grace of God, they could be you.

They may be avoiding Mother’s Day celebrations because they cannot not cry in front of you.  They are angry at themselves and jealous about what you have.  They are surrounded by bellies and babies.  They just want what seems to be so easy for other people.  They want to hold the babies they dream of. Their choices are not the timing of when to have their children.  Their choices are about where to bury a child or which fertility clinic to spend thousands of dollars at.  Their children are invisible to others, but they are so very real to these mothers.  These mothers carry their babies in their minds, hearts, and dreams.

The dreams of these mothers are real.  These mothers have named their children.  They have thought about feeling a baby move in a growing belly.  They look for nursery décor on Pinterest and dream of college graduation.  They have bought houses on cul-de-sacs and cars that can fit multiple children, waiting for children to come.  They dream of rocking chairs and first days of school and soccer games.  Their dreams are invisible to others.  Their mothering realities aren’t tangible to others, but oh my goodness, they are so very real. There is no baby in a belly or a stroller. Their arms and nurseries are empty. These mothers need and deserve your attention and compassion.

So on this Mother’s Day that seems to be easy for so many, open your hearts and minds to the women around you who are suffering in silence. Don’t make promises to them that you cannot keep.  Don’t offer words about God’s plans. Don’t tell these mothers that you know what they are going through, because you don’t.  Just offer these mothers empathy, not pity or sympathy. And most of all, ask to hear their stories. And then listen with your heart.

Thank you.

Have you read Love Warrior by Glennon Doyle?  It is the often difficult story of a woman who has been through a heck of a lot of misguided troubles.  I give her a lot of credit for having had the courage to heal through the fog and pain of her own life.

I was particularly interested in her descriptions of the so-called helpers in her life, people who meant well but who hindered her healing.  Their intentions may have been good, but their efforts often turned out to be self-absorbed and, ultimately, unhelpful. Because I hear so many stories about how helpers don’t help during the infertility journey, I offer my homage to Doyle’s Love Warrior.   I respectfully offer what I call “7 Infertility Helpers From Hell.”

1. The Fixer—The Fixer is certain that your terrible situation is a question and they know the answer. In fact, this person has A-L-L the answers to how to heal from your predicament. Note that I called this a predicament, notyour fear and pain. This is just a project to be figured out.  There’s a blueprint. Just do what they recommend, be grateful, and you will be A-OK. Doesn’t that make you feel all warm and fuzzy from your head to your toes? And you better feel better real quick. I remember when The Fixer told my husband and me to make love on the beach under a full moon and we’d get pregnant.  I could make this up.  The answer has been offered. What are you waiting for?  Get to it. And Don’t Worry About It!   Unfortunately, your spouse may be a Fixer.  The Fixer needs you to take the advice and feel good because he or she is already thinking about their own life and it is too difficult to even imagine what you are going through. They can’t even. Better to work on you as a goodwill project than consider the possibility of fear and pain in their own lives.
2. The Comparer—The Comparer knows a person with PCOS who GOT PREGNANT on their FIRST IVF cycle and then they GOT PREGNANT again ON THEIR OWN and they KNOW that you will too!  They don’t know how they know this, but they sure do.  Because The Comparer refuses to accept that your predicament is personal—andyes, (ahem) many vaginal ultrasounds and semen samples are personal—this person needs to deflect your personal pain.  It would be really painful for this person who feel your pain.  This person will not win a gold medal in validation or empathy.  They file you into a category for which they have a reference.  They may also talk about how they are the same as you because something really bad happened to them in their life, like whiplash or they didn’t get that job they really wanted.  And they were very, very sad.  FYI, your pain is about them, too.  The Comparer can’t deal with the intense feelings and situation that you are living in and it is easier to talk about themselves or someone else who also has a really, really, really hard story. Even harder than your own, of course.
3. The Reporter—The Reporter wants all the juicy details. “Oooooh, tell me more”, they say. They have many questions, ranging from the curious to the spicy, and they await your detailed answers. This is a Pulitzer prize winning New York Times reporter with a spiral notebook and a digital recorder. And once The Reporter has the data they just CANNOT keep a secret.  They have to share your big, horrible story with others without your consent.  “Did you hear?  Isn’t that JUST AWFUL?” The Reporter shares with boundaryless abandon in the spirit of transparency because she or he is just so darn worried about you.  Really, it’s easier to tell a story than to feel your pain.
4. The Cricket—*sound of crickets*. (I am whispering.  This person is quiet because they just don’t know what to do, or say, or ask.  They don’t want to do anything that might make you feel worse.  So they do nothing.   But they may say they heard you were doing okay, from The Reporter maybe? And they are hoping against hope that that is true because they don’t know what to do, or say, or ask.)
5. God Reps—Everybody take a breath and please don’t curse me out.  I’m just a messenger here.  The God Rep is here on a gossamer trail of thoughts and prayers, straight from The Big One Upstairs.  This person knows how you should feel.  Isn’t that a relief?  God knows why you are in this predicament, according to the God Rep.  They feel called by the Lord to tell you that God has a plan for you.  The suffering of trying to conceive for years and spending a bucket of money on having children is part of the plan.  Isn’t that simple?  I have seen many good people, devout people, get violently furious about the God Rep’s very important message.  Did you know that you can have a conversation with God directly, without the God Rep’s “help”, and that you can feel however you feel, good or bad?  The Big One can handle all of your feelings.
6. The Cheerleader—Yay! You are going to be okay!  They just know it!  Turn that frown upside down! Rah! You have time! You are young! You are going to beat the odds!  This is gonna work!  You just gotta think positive!  You just need to put on your lipstick and relaxandeatyourvegetablesanddoacupuncture!  The Cheerleader is too uncomfortable to step out of their rosy formation to consider your reality.  They don’t understand that they are dismissing your every feeling and leaving you feeling quite alone.
7. The Victim—The Victim has heard about your terrible news and feels just terrible—wait for it—that you did not share your news directly with them.  They had tohear secondhand.  They are verklempt. They are so emotional about being left out of your big story that they need to breathe a moment.  They thought you were close.  They need to tell you how they feel.  Please note that they have not expressed empathy for YOUR frustration and grief.  Theirs is bigger. Much bigger.

Who is a Real Helper when you feel vulnerable and afraid?

It’s the person who just listens.  Who gives you a hug without offering advice.  The Real Helper goes to the clinic with you, just because.  They cry with you, because infertility is unfair and they know you hurt.  It’s the person who offers understanding, not judgment.  They ask and understand when you can’t talk about it today.  They hold hope for you and your future when you feel hopeless.  They don’t offer to give you one of their children.  They give what they can give in the hope that it is helpful to you somehow, maybe now, maybe later.  And this person keeps checking in, offering a smile or an open ear.

Sometimes you have to be very clear with people about what you need. Like me, East Coast Debbie.  In the words of the immortal Spice Girls, “I’ll tell you what I want, what I really, really want.” What most people are desperate for is E-M-P-A-T-H-Y.  The Real Helpers do exist.  Please take the risk to open your heart to them.  And invest in www.Resolve.org and www.FruitfulFertility.org.

You know I love your stories.  Please feel free to share with me and others.  It really does help to talk with others about fertility struggles.

Hey, there’s a person over there who looks like they are suffering. They look like they are in pain and they are upset.

Go punch them in the head.

What? Do what? Are you serious?

I am absolutely serious. Go punch them in the head. While they’re down, kick them, too. And please tell them that they are a failure.

You look appalled by what I’m saying. Why is that?

Isn’t that what you do to yourself every day? Hating on yourself about infertility?

Every day I meet with women who hate on themselves for the medical problem of infertility.  Unfair, I say, so unfair!   Why are you treating a human being whom I care about in this terrible way?

STOP.

Flip the script and stop hating on yourself about infertility. Please.

Here’s how you do it. You have the same amount of compassion for yourself that you have for other people.

Can I tell you how many times people tell me that they don’t know how to do that? Maybe you are one of those people. I certainly had to learn it for myself. I come from a family that regularly serves up a shame buffet. A shame fest. I had to learn to have compassion for myself and not load my plate up with shame.

You can too.

Here are a couple of ideas. I love the book The Four Agreements by Don Miguel Ruiz. It was one of Oprah’s Super Soul Sunday book recommendations that was wildly popular several years ago. It is deceptively simple. Here are the four steps:

Be impeccable with your word.

Don’t make assumptions.

Don’t take things personally.

Always do your best.

Here’s my interpretation.

• Be impeccable with your word. In short, you don’t say ugly things to other people. You also don’t say ugly things to yourself. And if some of those slip out of your mouth or float around in your mind, you question them. A typical one is “I am a failure.” Is that true, you with a medical problem of infertility? Let me ask you this: would you tell a person with cancer that they are a failure? I don’t think so.
• Don’t make assumptions. Most people struggle with this one. In my experience, people do not make positive assumptions, as a rule. In the infertility treatment world, I hear more about assuming that a cycle will not work than people who assume that it will. Assumptions are often wrong or irrelevant, but when you go into them, your mind and body will react negatively. This is why people are often surprised and relieved when their negative assumptions are not true.
• Don’t take things personally. You see pregnant women and new babies and you become infuriated. I feel you. I have been there. I also know that those other women did not get pregnant or have a baby to be harmful personally to me or to you. Here is a picture that can tell the story.

• Always do your best. This does not mean being perfect. After you have an egg retrieval, your best will be to walk down the hall at home and get into bed without falling. On a day when you have had enough sleep and you are feeling relatively well, your best will be very, very different. They are both your best. Best is relative.

So, stop it. Stop hating on yourself. Infertility is hard enough without treating yourself terribly. Hug yourself instead. (I’m sending you a hug too! ?) Really, use The Four Agreements every day. It really helps. And thank yourself for doing your best to get through each day. Just your best. I am there with you in spirit.

#FliptheScript

#NIAW

During this National Infertility Awareness Week, write yourself a love letter.  A loving, compassionate, kind letter, telling you that you are wonderful. That the world is blessed by your presence.  That you are doing your best with a very challenging situation.  And most of all that you will get through this.

xoxoxoxoxo,

Dr. Deborah Simmons

#NIAW  #ListenUp

I read an article recently entitled “­Mother who spent £20,000 on FOUR rounds of IVF says she was made to feel ‘selfish’ because she already had a child – and reveals her battle to conceive felt like a ‘shameful secret.’ (www.DailyMail.com, March 30, 2017).  Note the “FOUR”, as if that’s SOOOO much.  It’s not.  Most of my patients do whatever they need to do to build their family.  If a doctor told them to stand on their heads and cluck like a chicken, they would do it.  And they are often judged negatively for it.

Secondary infertility is the red-headed stepchild of the reproductive world. Secondary infertility gets no love at all.  It is confusing and maddening.  This is an ache.  Yearning. There is nothing logical about wanting a child or children.  We just want it.  The pain and obsessiveness of the chase is very similar to primary infertility with one big difference: people are fresh out of empathy for you.  Even people who are trying to make their first child don’t quite understand your distress.

I’m learning to live without you now

But I miss you sometimes

The more I know, the less I understand

All the things I thought I knew, I’m learning again…

“The Heart of the Matter”

By Don Henley

Let’s say your first child was conceived in the bed with some pleasure or in a doctor’s office.  Great! That went well enough.  Let’s repeat a successful process.  Wait. Things aren’t working.  Time is passing.  Things are getting more confusing.  It can be a crushing blow when attempts at the second child go flat.  There is a sense of panic because you are trying to make sense of something that makes no sense.

WHAT THE HECK IS GOING ON HERE!?

Inseminations worked before.  Why aren’t they working now?

IVF worked for us.  Why can’t we get good embryos again?

Nobody ever told me that I might not be able to get pregnant again!

Why am I having miscarriage after miscarriage?

When did my AMH (Anti-Mullerian Hormone) level plummeting?

Unfortunately, there are seldom answers to these important questions.  Urgency and anxiety grow in the absence of data and certainty.

This is when the questions and “helpful” comments start from others.  Let’s list them, shall we?

• What’s your problem? At least you have a child.
• You’ve got what you wanted. Why can’t you just be grateful that you have a child?
• Aren’t I enough? (This one seems to be is a specialty of the male species.  She loves you a lot but she needs something more.  Read my earlier blog post “No Fellas, She Needs a Child, Too.”)
• Maybe it’s meant to be. Move on. Get over it.
• It’s not the end of the world if you have one child.
• This is God’s way of saying (________).
• Why would you spend money to have another child? (Hint to the helpers: why wouldn’t you?)

Exhausting, all this “helpful” advice.

I understand your pain.

I wish other people did, as well.

It is hard to explain to your child that he or she may or may not get the sibling they ask for.  You are trying.  So hard.  It’s not your fault.  You are a good person.

Your very real medical problem is being dismissed by others who cannot understand that your family is not yet complete.  Ask yourself how many children you have wanted.  I’ll bet that the number comes to you right away.  I don’t know of any research that explains that instant number that everyone seems to know.  I know that you are setting the table for another person.  You have invited them but they are not here yet.  And they may not be coming after all.

This is when empathy from others would go a long way.   It’s National Infertility Awareness Week from April 23-29, 2017.  If you have the energy, teach the people around you about your pain.  Because it’s real. I’m doing my best to do the same.

Please hang in there.  Hold on to the dream, if there are different paths to take that might make the dream come true.  And if you are at the end of the journey, your grief is real and true.  Your tears speak to what might have been, and who you are now.  Give yourself the time and grace to heal. Because you will.  And new dreams will form…

#ListenUp #NIAW