Is Infertility A Disability ?

Sunshine, Angel, Rainbow

This morning has been a learning experience for me. Infertility is a leading cause of adoption. One adoptee wrote – I find it hard to sympathize with infertility and I’m aware it’s because that was the only reason I was adopted by my adoptive parents. I’m angry because of the abuse I’ve suffered because of that issue. In the adoption community, women are counseled that they must deal with their mental and emotional issues related to infertility before choosing to adopt a child. An adopted child will never be a replacement for a baby you lost or failed to conceive. An adopted child was conceived and birthed by another woman who will always be that child’s first mother.

Is infertility a disability ? – turns out that legally it is.

In 1998, the US Supreme Court found in Bragdon v Abbott that reproduction is a “major life activity.” And the Court held that the risks of passing the disease to offspring constituted a “substantial limitation” on reproduction. Consequently, infertility met the ADA’s criteria as a disability.

According to the World Health Organization – Infertility has significant negative social impacts on the lives of infertile couples and particularly women, who frequently experience violence, divorce, social stigma, emotional stress, depression, anxiety and low self-esteem. A diagnosis of infertility is determined as the inability to get pregnant after a year or more of trying. Infertility can trigger feelings of shame and a sense of failing to live up to traditional gender expectations. Infertility can strain romantic relationships that included the expectation of shared parenthood. (We watched the 2020 movie Ammonite last night which dramatizes that strain.)

The National Institutes of Health notes that – infertility could be a source of social and psychological suffering for women in particular. In some communities, the childbearing inability is only attributed to women, hence there is a gender related bias when it comes to a couple’s infertility.

Psychologists also must understand that infertility is a kind of trauma, often a complex trauma. Anxiety, depression, grief and loss are part of the psychological impact of infertility. There may even be more to the experience when defined by the individual. At the extreme, the process can be so stressful that a woman who undergoes fertility treatments may develop a form of post-traumatic stress disorder (PTSD).

While defining infertility as a disability may have legal and medical applications, most women do not see their infertility as a disability. When I experienced secondary infertility, I never thought of myself as disabled. I simply had reached an age where my own fertility (I gave birth to a daughter at 19 and had a pregnancy aborted at age 22 or 23) naturally had ended. While it did make me sad that my husband now desired fatherhood after I was too old to gift him with that, I still did not think of myself as disabled. Women in my adoption community who have experienced infertility do not consider themselves disabled either.

Part of my learning experience today was learning about all the “baby” symbolic concepts that I didn’t know before. Angel baby always was understood by my heart. I find it interesting that a mom’s group that I have been part of for over 18 years initially gave our group the name Sunshine Babies because our babies were all born between April and August. Later, we simply changed that to Sunshine Moms. We knew nothing of the use of such words when we chose that concept as our group symbol. We never knew that word “sunshine” had a larger meaning outside of our group.. We all conceived via assisted reproduction. Therefore, a sunshine baby can have different meanings for different families.

My own daughter experienced a still birth prior to giving birth to my grandson and later my granddaughter. It was a sad and traumatic event to be certain. The terms acknowledge the complexity of pregnancy and infant loss as well as any pregnancies that follow such a loss. For those as clueless as I was before this morning – here are some commonly used phrases related to pregnancy outcomes.

The term rainbow baby refers to a baby born to a family after a miscarriage, stillbirth or neonatal death. The concept of a rainbow baby relates to the concept of a beautiful rainbow appearing after a turbulent storm. The concept symbolizes hope and healing. I always have loved rainbows. After every storm there is a rainbow. A rainbow baby brings an unimaginable amount of joy and a sense of peace, knowing that you now have a beautiful, precious little baby.

The sunshine symbol is often used to refer to calm moments before a storm. Therefore, a sunshine baby is the child who was born before you encountered a loss. Your loss could be the result of a miscarriage which is defined as the loss of a pregnancy in the first 20 to 24 weeks. A sunshine baby represents hope. Their presence allows you to believe that you can conceive a baby successfully. Your sunshine baby is a reminder that you are fully capable of maintaining a pregnancy and delivering a healthy baby.

There are even more terms as well – a Golden baby: a baby born after a rainbow baby, a Sunset baby: a twin who dies in the womb (I did experience a “vanishing” twin in my first son’s pregnancy), a Sunrise baby: the surviving twin of a baby who dies in the womb.

If you have a biological child, you are simply lucky. Some people will never have that chance or will have had the opportunity to parent taken away from them by miscarriage or infant death. When an intractable infertility may become an awareness after a first pregnancy results in a loss. Some women will mourn that loss all the more, realizing that they will never, ever experience having a child of their own genetic biology. This can be extended as well to a birth mother who loses her child to adoption for whatever reason, especially if that mother never experiences a reunion with her child (as happened to both my maternal and paternal original grandmothers).

The truth is, when you lose a baby from any cause, you develop a permanent psychological scar. In some women, it is difficult to imagine that they will ever have another baby. Losing a baby can change a person’s dreams and hopes of any future that includes being a parent. Some people will tell you that you should just “get over it.” This is not helpful advice to extend to a bereaved parent. The overwhelming feelings experienced following a loss are normal. Usually with grief and sorrow, the intensity does lessen as time passes.

Fairy Tales

Today’s story – I have been trying to become a mom for four years. I have had four miscarriages, five IVF cycles and more surgeries than I care to count, and I just keep getting older. As I come to grips with the likelihood that my husband and I may not be able to have biological children, I thought that adoption could be a beautiful way to have a family, but I definitely don’t want anyone to be exploited or hurt as a result.

An honest response – I am sorry for your loss suffering from infertility. I’m sorry the adoption industry preys upon your grief and got your hopes up about adoption being some kind of beautiful alternative to having your own child. I’m certain you didn’t mean to be self-centered about it. You’re just trying to work through it. You have been told adoption could soothe your pain.

Unfortunately the sweet serendipitous miracle situation you hope for is the same as 40+ other couples desire. You all want a guilt free, uncomplicated scenario. That’s the fairy tale the adoption industry would like to sell you. But it is inherently extremely complicated and painful for children who are used this way. There is no way around it. Obtaining a stranger’s kid will not fix the hole left in your heart from infertility. I’m so sorry.

Parental Impostor Syndrome

It’s one thing to pretend when you are a child, quite another when you are a mature adult trying to pretend you are the parent (though actually you are) of your adopted child. An article in The Guardian caught my attention – “Everyone knows you’re not a real mum.”

The parental impostor syndrome some adoptive parents have – that they are faking it, and will never cut it as a parent – is seldom acknowledged. The concept of an impostor syndrome is loosely defined as doubting your abilities and not feeling good enough. There are certainly quite a lot of adoptees who have felt they were not good enough in their adoptive parents perspective.

Ranee, 52, lives in south-west London with her husband and their two adopted children. Ranee is of Sri Lankan heritage and her husband’s family are from Mauritius. Because of this, it took a long time for them to be matched with their children as many councils are keen to match the ethnic backgrounds of potential parents and children.

Ranee says, “It was as if I had fake written on my forehead.”

During that time, Ranee and her husband went through a rigorous vetting process, yet when the process was complete and they were a family with children, she felt disoriented by how much she didn’t know. “I remember walking into the playground and thinking, ‘Everyone knows you’re not a real mum,’” she says, upon taking her five-year-old to school for the first time. “It was as if I had a siren above me, or ‘fake’ written on my forehead. Just trying to talk to parents on a playdate, or wondering what other kids would eat was tricky. My children were really picky eaters, and all of this made me think I didn’t know what I was doing.”

She says she had done courses and read books to try to prepare, but nothing quite readied her for the experience of becoming a parent. “I didn’t have any mum friends and I’d gone straight from working to being a stay-at-home mum. I kept thinking, ‘Does everyone feel like this? Is this how it is?’”

Ranee, a food photographer, says now that the adoption is completed, her impostor syndrome has largely gone. “Occasionally it comes back when we’re dealing with school issues, but I now have a network of friends who have also adopted and that has helped me gain some perspective.”

As well as the fact that she and her husband went from a couple to parents of two in one day, Ranee thinks anxiety about whether she was doing things “right” played a big role in feeling like an impostor. “I sometimes felt as if there was a model parent out there, but I learned to lower my expectations, and understood that my children don’t know any different. I now subscribe to ‘good enough’ parenting. I know I will make mistakes and I have to forgive myself and not get het up.

“I used to want to run out of the playground and hide under the bed. But I’ve learned that you just have to set your own standard. Trust that you will be a great parent, and fight your children’s corner. One day you’ll fail, the next day you’ll feel less of a failure, and so on, until it normalizes.” Years later, she says, things look very different. “I have two amazing kids who are teenagers, and I know they will forge their own lives, and I just want them to be happy.”

And parenting it doesn’t get any easier with more children, because each child will have a different personality requiring different methods of parenting. My sons certainly teach me that lesson all the time. One keeps to himself a lot but will eat anything I cook. The other one is socially outgoing but a very picky eater, I say he is a purest. And there’s something about being a parent in your 50s and 60s, you don’t have the physicality of your 20s or 30s.

When I was having lots of challenges with my older child, I realized it was a cry for attention. He had “lost” me to his younger brother who understandably needed nursing and diaper changing. When I realized this, I swapped with my husband when we were out with the family and even at home, spending one-on-one time with the older boy and the problems turned around very quickly.

We think we have to live up to other people’s examples but that can make us feel inadequate. All the parenting books are suggestions but you have to invent your own way of parenting, because every child is unique. Good enough parenting is a good goal. The mistakes we make give our children space to grow into better adults, things to rebel against, and it helps them forge their personality. We love our children but what is more important is to respect them. 

Don’t let your self-doubt define you. Enjoy your own parenting style because it allows you to display your authenticity to your children and gives them permission to have their own style.

Duty ?

Today’s story –

I was privately adopted as a baby. I was raised by my adoptive parents and 2 of their biological sons. My adoptive father was my favorite in the family. He took care of me and loved me and stuck by me, but more so for his biological sons. Even so, I felt closest to him. I’m 52 years old now. I have been taking care of my adoptive parents for about 5 yrs as a live-in caretaker.

My adoptive dad died 2 months ago and now I am stuck with my loveless, bitter, jealous adoptive mother who never seemed to like or love or want me. I believe she adopted me for charity status and attention.

Now that my adoptive father isn’t here to buffer her emotional abuse and filter her words for me, I am living in a nightmare situation. She doesn’t want me here but needs me. I feel like I owe her because that’s how she’s always made me feel. I’m grieving the loss of my adoptive father.

This happens. Both of my parents were adoptees and they both ended up having to care for or make arrangements for the care of their adoptive parents and to administer their estates (which is the most thankless job, I can tell you now because I had to help my dad after my mom died and administer their estate after he died 4 months later). It was my parents examples that allowed me to muddle through it and see it to the conclusion of all the related affairs. My adoptive grandparents were all good people. My mom’s adoptive father died early on and left my adoptive grandmother living alone for decades. My mom did have a difficult relationship with her adoptive mother but my adoptive grandmother’s decline certainly turned some tables between them, which I do believe was healing – somewhat.

One bit of advice for the adoptee trapped in difficult circumstances above (which I do agree with) was this – You don’t owe her anything. Coordinate her care with her insurance and take care of your emotional health.

Being a full time caretaker for someone who mistreats you should never be the duty of any person. This kind of work can be handled by others who are trained to do it. I can understand if there is love and care between the persons but if it isn’t there, it is better to get one’s self out of the role.

This thought occurred to me as well –  She has two sons to take care of her. Where are they? Also there are wonderful old folks homes, where people chose to do this work and get paid to take care of the elderly. This is not your job.

This is not (sadly) an unusual situation – I had that same relationship with my adoptive mom. She was abusive yet felt entitled to my attention because she “sacrificed soooo much” for me. I cut ties with her two years ago. I have no intention of ever speaking to her again. Birthdays, holidays, deathbed, NOTHING. You don’t owe her ANYTHING. If you are able to walk away, do it.. and never feel guilty for it.

From another – You don’t owe her your life and happiness. Is there a way to navigate getting her a state guardian or some other sort of assisted living arrangement? Do what serves your whole-self. And another – At the very least her sons should share the load. People take care of their parents when they age, out of love and charity, not because they HAVE to. You don’t owe her that for adopting you. What you’re doing is selfless.

There is serious truth in this one – Taking care of a parent is hard under the best circumstances. Adoptive and abusive add layers of complexity. I was in a similar situation with my adoptive parents and my mental health improved drastically when I moved out. And truth in this one too – You don’t owe her anything. Anything and everything she did for you growing up was her job and responsibility to do as a parent. Anything and everything she did to diminish you growing up, that was also her choice. If you choose not to sacrifice your happiness, sanity, mental health, and peace to be her caretaker, that’s just a consequence of her choices and actions. It’s okay to choose yourself and put yourself first.

I understand this reality as well – The problem with “put her in a home” or “there are wonderful elder-care homes” is that most of those “homes” are run, often by large corporate entities that own many such “facilities,” for profits and cause much misery and too early death to the helpless folks stuck into them. 

My parents and my in-laws all wanted to die at home with family. I am thankful that all of them were able to have these wishes fulfilled but none of these were cruel and abusive. That changes the choices one must make for their own good. We also had to have the help of paid care-takers in addition to our management of their situations.

Cousins Through Adoption

My aunt called me last night to tell me that her only son, my cousin Allan, had died this last Saturday. It was a bit of a shock and not a shock because for several years she would often ask me to pray for him due to some health challenge. When I mentioned his poor health to her, she said he was actually doing better lately and she worried about him less. He was a security dog trainer and he was doing a meet and greet with a potential new client when he literally dropped dead, with his wife nearby waiting for him in their car. The ambulance arriving was what alerted her that something had happened. So, he died instantly without pain doing what he loved.

I became closer to my two aunts – both from the paternal side – after my mom died and then my dad died 4 months later. I really didn’t have much contact with them for decades until that happened. It is like they came to fill a bit of a void for me of connection to something childhood. In fact, I told my husband – cousins are a childhood thing. They connect us to when we were children. My husband remembers meeting this cousin and I remember it was when we visited my aunt at her parents home in Pennsylvania before we had children. In fact, I wasn’t seriously close to this cousin had it not been a reuniting with this aunt by telephone and hearing constant updates on him. My aunt will be 90 this coming December and my cousin and his wife had just celebrated their 27th wedding anniversary on April 2nd. I don’t even have a photo of him, though I do have a recent photo of my aunt that she sent me one Christmas not long ago.

My adoptive family relations became more complicated for me once I discovered who my original grandparents were (both of my parents were adopted and their siblings were adopted except my dad’s step-sister who is the biological genetic daughter of my dad’s second adoptive father – yes, he was adopted twice in childhood after his adoptive mother divorced – as my youngest son said not too long ago, “you have a very complicated family”, well yes) and started having reunions with my genetic cousins with whom I have no shared life history but through whom I acquired insight into my original, genetic biological grandparents. I also acquired digital copies of photographs of my genetic family members. It is difficult to build relationships with decades of not knowing you existed between the two of you. I take a patient perspective on it and allow it to be whatever it will be. My genetic biological family is important to me and made me whole but there are still these other people with whom I have life history and I have begun to reintegrate them into my life as well.

So, while I was on the phone with my aunt, I thought of my cousin Christy. She is the daughter of the other aunt (that step sister by adoption) I’ve become closer to with the death of my parents. She recently turned 80. I remember my youngest sister sharing with me that she, Christy and Allan used to get into mischief at my Granny’s house (my dad’s adoptive mother). So I told my aunt, I would call and let Christy know and my middle sister as well. My youngest sister ? I am estranged from her, due to the severity of her paranoid schizophrenia which created a wedge between us due to cruel treatment by her towards me as I tried to administer my deceased parents’ estate and create some kind of ongoing support for her now that there are no parents to provide that.

My memories of my now deceased cousin are complicated in ways I would rather not share publicly. He is part of the story of why Thanksgiving was wrecked for my family. My uncle died due to the complications of Lou Gehring’s Disease during a holiday football game on TV as my dad and uncle’s family awaited Thanksgiving dinner to be served. There was always that watching of football games as part of my family’s holiday. The dinner was interrupted and the holiday ever after a reminder of his death. My cousin was only a child when his father died. This cousin was strikingly similar in appearance to his dad and I believe my paternal adoptive grandparents came to relate to him like a replacement for the son they lost that Thanksgiving Day.

RIP Allan Hart. May your dear wife, Christine, find comfort in the closeness of her own mother. They were living on the same property with her at the time of his death. I can truly say of ALL my cousins – God made us cousins. No truer words could ever be said since none of us are genetically, biologically related.