Finding Family: A Bittersweet Saga

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A year ago, I wrote “Finally Finding Family.” I’d always wanted to know the true story of my birth and why I was given up for adoption. With DNA testing, many adoptees like me, who had give up hope of finding their birth families, are now able to do it.

It’s been a wild, emotional, roller-coaster ride. What I learned has upended my concept of who I am, over and over, in waves of absolute joy, happiness, anxiety, fear, and depression. It’s as if the Earth has moved under me, over and over, with every big revelation. It’s been far more disconcerting and disturbing than I imagined.

Yes, there have been some highs, and there are things I’m immensely grateful and relieved to know. I found the birth family I’d always wanted to know, but there is a lot more to it than just finding them. There is so much sadness in the heartbreaking story I discovered. I’ve also made rookie mistakes that either have or will hurt other people.

For ease of navigation, I’ve divided this post into sections.

First, a couple articles that help explain the process. Feel free to skip this section.


Some general information on DNA searching:

The Guardian newspaper recently published two articles about using DNA to find family, as well as doing DNA tests, with the option to find DNA matches turned on, and how disconcerting those results can be. The first is:

DNA search angels: the Facebook ‘detectives’ who help reunite families

This article explains the basics of how family is identified, using a method called triangulation. I had no idea what I was doing at first, but the Facebook group that is mentioned in the article, DNA Detectives, was recommended to me, and it’s great.

It’s a good article, but they mention adoptees who contact all their closer DNA matches, which is really one of the worst things you can do, and was my biggest mistake. You need to figure out who your birth parents are before you contact anyone, and yes, you can usually do that without making contact. You should always contact your birth parents first, if they are around.

They also write about being able to find your family in 24 to 48 hours, but it very rarely happens that quick. Sometimes, there are close enough matches that you can find a parent or sibling quickly, but, more often, it takes days, weeks, or even months, to figure it out. Ancestry.com has genealogical records such as birth, marriage, death, and census records, that makes it easy to find relationships, marriages, and more information on people than you think is available.

I found my own birth family in 2 months, but it was complicated and I was learning. I then found my brother’s birth family. I found his father in 2 days, but it took 3 weeks to figure his mother out.

In ‘Your father’s not your father’: when DNA tests reveal more than you bargained for,” they point out that “genetic tests are seen as harmless fun. But the secrets they can reveal can split families and leave users traumatized.” That’s important reading for anyone who takes a DNA test.


Decoding My DNA Matches, and the Challenges Within

When I received my 23andMe results, it was immediately clear that it would be much easier to have results from all the DNA sites, and I ordered an Ancestry DNA test. I also uploaded my DNA file from 23andMe to FamilyTreeDNA and MyHeritage, and have matches from both of those, too.

So, this is basically how you do it: take all your DNA matches that are fairly close, and start a giant multi-family tree, putting in all their ancestors.

A relative, whether a cousin, aunt, uncle, niece, sibling, etc, is a relative because you share ancestors. 1st cousins share grandparents, for instance. The possible amount of DNA shared varies by the closeness of the relationship, but these ranges are known. If you know the generation that someone is – your parent’s generation, yours, etc, you input the amount of DNA into DNAPainter, and it shows you what relationship someone could be. The closer they are, and the more DNA you share, the fewer options you have. If you want to do this, read the articles above, and join DNA Detectives on Facebook.

On 23andMe, I had a bunch of matches that didn’t make sense at the time (half great nephews), and what they called a 2nd cousin match, plus another 900 matches that were labeled by them as 3rd to 5th cousins, or distant cousins. Know that these estimates of the relationships are only estimates – a half-first-cousin was integral in figuring out my brother’s birth mom, but had been labeled as 3rd – 5th.

Thankfully, my new-found cousin, Katherine, contacted me, and taught me the intensive process. Katherine is one of the really good things to come out of my search – we would have been friends just based on shared interests, and have become very close. Her guidance, both in the logistics of the search and the emotional roller-coaster, were essential. Later, a cousin on the other side, Tamara, also joined in to help.

Ancestry has a much larger DNA database, and I finally had one really solid match, on what turned out to be my mother’s side – my uncle, Patrick.

But it took 2 months of learning, searching, exploring, researching, and triangulating the cousin DNA matches I had from all these sites in order for me to come to a definite conclusion as to who my birth parents were.

My case was particularly challenging, as I had a whole bunch of half-great-niece/nephew matches, and a couple half-nephew matches, but I could find no connection between them and the 1st cousin matches to me that they are also related to. A half-nephew (child of a half-sibling) was the only result possible for 2 people, based on the amount of shared DNA and the generation.

DNA doesn’t lie. This is hard science. Triangulate enough cousins – find their path to a mutual ancestor – and do enough research, and it becomes very clear as to who your great grandparents are, then your grandparents, and finally, your parents. In the end, I triangulated nearly 100 cousins, and my family tree now has 7500 people in it, although a lot of that was me tracing my history back to Europe and deep history.

But there was no path for several half-nephews and half-great-nephews, if I go with the names on their birth records. Their parents are half-siblings who likely don’t know their father is someone other than the person on their birth certificates. Here’s where I went wrong – writing to two people who were the parents of half-nephews. One never answered, but he recently took an Ancestry DNA test himself, and he is, indeed, my half brother, on my male biological parent’s side. But I don’t think he knew that… I basically just destroyed his concept of who is father was, for which I’m intensely sorry.

The mystery of my many half-great-nephews was solved when the mother of one told me that one of my half-nephews had been a sperm donor in college!

In the end, the DNA and my research proved that my birth mother was my Uncle Patrick’s sister, and I identified who my male biological parent was. He had 3 children in his marriage, and at least 3 of us who he likely didn’t even know about. Cousin Katherine and I had a lot of discussion about that, since it was very strange. None of the options as to why that would be were good ones, and I knew there could be hard revelations to come. But knowing something is possible and learning the truth are two very different things…

First Contact: Joy and Heartbreak

I was terrified when I reached out to my birth mother. She was about to turn 76, and it had been 55 years since she placed me for adoption. Would she even want to hear from me? I knew she had 2 other children, one being the half brother who was mentioned in the story the adoption agency told, and the other being my younger half sister.

I sent my birth-mom an explanatory letter and some pictures. I tracked the envelope in a state of extreme anxiety. My uncle Patrick, my birth mom’s brother, finally saw the messages I had sent through Ancestry, on the day the letter was being delivered. He was able to alert my half-sister, Nikki, and she and my birth-mom opened and explored the info I’d sent together.

Later that evening, we had a Facebook chat, and I was able to communicate with my birth-mom and half-sister for the very first time. I was over the moon. I was thrilled when my birth-mom said she’d always thought we’d connect, and amazed and relieved that my sister, Nikki, had always known of me – often, a child born out of wedlock, especially in the ’60’s, is seen as a source of shame, and never spoken about.

The story of my birth-mom’s life and my conception and birth was heartbreaking.

I had already found the obituary for my maternal grandfather, who died in 1957, when my mom was only 15. He was a flight instructor in the Air Force. He was killed in a horrible jet crash. My maternal grandmother, my mom’s mom, remarried less than 6 months later, and her new husband was an abusive alcoholic.

Still reeling from her father’s death, my mom left home, and wound up married at 17. Her new husband was also abusive, though, and she filed for divorce on her 18th birthday. My half-brother, Terance, had been born just a month before.

She was tiny, but she was fierce, and she managed to get an apartment, a job, and childcare for Terance, and set about creating her life. By the time she was 20, she had settled in as a divorced, single, mom – a brave thing in 1962.

And then the life she’d built was destroyed.

My mom was active in her church, and met a man who seemed kind and gentle. He said he had a PhD and he was supportive of her as a single mom. They had 3 dates, with 2 year old Terance going along. After the 3rd one, this man date raped her, and then proceeded to apologize and told her that he already had a wife and 3 children!

Just like that, she found herself pregnant again. She never saw him again, and didn’t even remember his name when I asked.

But I knew who he was, this 34 year old man who targeted my vulnerable, 20 year old mom. DNA doesn’t lie.

My male biological parent was telling the truth when he finally said he already had a wife and 3 children. He did, indeed, have a PhD. He died in 2004, and his obituary and memorial pages are filled with praise for him. He was a respected educator and school administrator through his long career, which I find disturbing, given his predatory behavior around my much-younger birth mom, and the other children he left scattered around.

And there were pictures. I look like him, my male biological parent. He isn’t my birth father – that’s not a term I can use with him. He had no idea I was conceived when he raped my mom. She bravely asked to see the pictures, to be sure. She remembered and identified him. I know this was extremely painful for her, and the whole thing has brought up terrible memories.

And there are those other 2 or more half-siblings I have, who were born to mothers who were already married to someone else. They are also the children of my male biological parent. I can’t know whether those other children were conceived through rape or consensual sex. I also can’t know how many others there are that haven’t been tested.

It’s been almost a year, and I still can’t look at his pictures, seeing my features so clearly reflected in his face.

I don’t feel shame that I was conceived through rape. Some people do.

I feel rage. Rage at what was done to my mom, and the fallout from it.

My mom’s life, that she’d tried so hard to build, on her own, was abruptly turned upside down. She couldn’t continue to care for Terance and work while being pregnant. She was forced to move back home, to her abusive step-father. He and her mother said they would not support her if she wanted to keep me – and, despite the circumstances, she did want to.

I don’t know how a woman loves a child who is conceived by rape. But she did. So much so that she apologized for having cried so much during my pregnancy. That apology broke my Heart.

I was wanted. I was loved. I wasn’t rejected, as I’d always thought. I was loved. And that is the most profound gift that this ordeal has given me.

Nature Trumps Nurture

We’ve all heard the arguments for whether Nature or Nurture has the biggest influence on a person’s personality. I was shocked to discover that, in one regard, Nature beats Nurture almost every time, and this is something I think other adoptees should know.

I immediately felt great grief and compassion for my birth mom when she apologized for having cried so much when she was pregnant with me. I can’t imagine the depths of the desperation she felt, having to move back home, with me growing in her womb, the product of a rape.

But she loved me. She wanted me anyway. And she was forced to give me away by her mom and abusive step-father. She cried out of deep grief, as she knew I was going to be ripped away from her, and it was unlikely she would ever know what happened to me.

I have 2 daughters of my own, and I just can’t imagine how awful that would be, when every instinct is telling you to protect and nurture the babe growing inside you.

I was shocked, then, to learn that scientists say that all emotion is chemical in origin, and that a baby in the womb feels all the emotions the mother does. They have no context, of course, to put the feelings into, but the pain, grief, fear and desperation of a mother are all things the baby feels, too.

This can have lasting consequences. Babies whose mother has these types of deep emotions often have more colic and are fussier than other babies. They are also prone to lifelong depression, and often don’t know why.

That describes me, from the start. I had a great, loving adoptive family. I was nurtured, and never wanted for anything.

And yet. I was a sad child. My adoptive mom told me she didn’t know why I was so sad or what she could do about it, or why I wouldn’t talk to her about it.

When I figured out that I have Asperger’s, I thought that maybe that was why. But now, I don’t know. This sadness and grief has followed me all my life. How much was because of what was done to my birth mom and what she was forced to do? I don’t know.

I do know that when I read that, the Earth moved under my feet, and once again I had to reevaluate how this search was rewriting what I knew of myself. It distresses me to think of being a babe awash in emotions I couldn’t understand, and the grief my birth mom felt, the tears she shed. I don’t blame her in any way. None of this is her fault. But the emotional fallout continues.

Who would I have been if that hadn’t happened?

The Primal Wound Adoptees Carry

There is another aspect of adoption and the lifelong impact it has on the child, and I believe all adoptees as well as adoptive parents should know about it.

Human babies, like all mammals, are born knowing their mother’s voice, scent, and heartbeat. If you’ve never seen a litter of newborn puppies or other animals making a beeline for their mama’s nipples right after birth, get yourself to YouTube and watch some.

Babies know their birth mom. And yet, babies being given up for adoption are taken from those moms, and placed in the care of someone else, who they can’t identify.

The primal wound theory holds that “severing the connection between the infant and biological mother [through adoption] causes a primal wound which often manifests in a sense of loss (depression), basic mistrust (anxiety), emotional and/or behavioral problems and difficulties in relationships with significant others… affecting the adoptee’s sense of self, self-esteem and self-worth throughout life.

I didn’t bond with my adoptive parents correctly because of the circumstances of my birth. I wish I had known that while they were still alive.

Trials and Tribulations

The day I read the message explaining my conception, in late June, 2018, I was told that what I thought was a cyst was probably a tumor. I was referred to a gynecological cancer specialist at the medical school hours away. Everything else got put on the back burner while I dealt with infection, biopsies, more infection, long drives to see the doctors, surgery, even more infection, but finally, the all clear. It wasn’t cancer. But it took a huge toll on my body, and it took forever to heal. July, August and September were a nightmare.

In the middle of August, my birth-mom had a heart attack. She had turned 76 in July. She was scheduled for quadruple bypass surgery, and I thought I was going to lose her, when I’d just found her. I was panicked and so upset. But she’s tough. She got through heart surgery, had a difficult recovery, and then, blinded by cataracts, went through cataract surgery.

I am unbelievably thankful to my sister, Nikki, who took care of our mom through all that. Nikki has 2 boys, and is an occupational therapist, and very busy. My uncle, Patrick, moved to Arkansas to be near my mom, rekindle family ties, and support her.

And Then, Summer the Rescue Dog Happened…

Just when I thought I was getting all settled in with my new family, building ties, this happened…

In November, a dear friend in the UAE, Charlotte, who had rescued my Akeelah, contacted me, in need of a home for a horribly abused dog named Summer. I posted it on Facebook, and my Uncle Patrick saw the pics and read her story. I already knew that a love of canines is apparently hereditary, having seen his many dog pictures and heard about her love of dogs from my birth-mom.

Patrick called me, my very first phone call with my biological family, and after hours of discussion and long Facebook conversations with Charlotte, he decided he wanted to adopt Summer. To get a dog from the UAE to Arkansas is no small feat, but I was determined to make it happen.

Summer arrived here just before Christmas, and I picked her up from the airport. It didn’t go well. When Akeelah came from the UAE, she came out of the crate happy and tail wagging, seemingly knowing she was now home with her people. But Summer wouldn’t come out of the crate. She was absolutely terrified, and actually snapped at me.

Summer was here with me for less than 24 hours. That didn’t go well, either. When I broke a glass, I put her back in the crate, and she went from being okay to again being triggered into fight or flight, and there was terrified snapping and a refusal to come out. Canine PTSD.

I explained the situation to Patrick as it evolved, and told him that I was afraid to put her back in the crate the next morning for her ride from Virginia to Arkansas with a dog rescue. I did not want to trigger her PTSD any more. He agreed.

Summer made it there, and for a few days we were all encouraged. Then first I, and then Charlotte, got messages that we had lied about her, that she was deaf – even though there were 2 videos he had seen of her howling to the sound of the mosque call. He also was furious I had kept the crate, even though I had discussed it with him both online and on the phone.

A couple days before Christmas, Patrick wrote us on Messenger, said terrible things to me, and to my utter shock, called Charlotte, who had poured her heart and soul as well as a lot of money into Summer, a lot a nasty names. He then blocked the both of us so we couldn’t reply. Charlotte spent the Christmas holidays crying, and not a few tears were shed here, too.

I was able to send some messages to Patrick from another Facebook account, and I know that Summer is being well cared for. They are adjusting to each other. He eventually unblocked Charlotte, and has had some conversations with her. She feels better about it.

I’m still blocked. It’s a really strange thing to me. A few days before, he had listed me as his niece on Facebook and we were having long talks on the phone. Then he shut me out.

A Cautionary Tale

I have spent the months since wondering what on earth Patrick told my mom and Nikki. We haven’t had very much communication since, but I know that reliving that time in her life was very painful for my mom, and her health has been her priority. Nikki is very busy with work and her boys. Still, I am a little sad that I haven’t even talked on the phone to them.

Now there’s the ongoing trepidation I feel for my male biological parent’s three legitimate children, and for my other two half-siblings. There may be more than that. I don’t want to hurt anyone. But, while I could make my info private so no one would see it, I just can’t do that.

I’m an Aspie. Person with Asperger’s Syndrome. A reverence for the complete and total truth is part of my being, part of who I am.

I also don’t think I should “hide” out of fear that someone in my male biological parent’s close family would find out about me, and there’s still my half-siblings, and all the half-nephews out there on Ancestry, too.

The man who brought us into existence is dead. I would not share the story of my conception with the children he had in his marriage, or even return a message. I don’t want to ruin their memories, which appear to be good ones. But one day my half-siblings and the others may want to know what I spent months learning, and I want to be here for them.

I learned what I set out to learn, and discovered I was wanted and loved. That means more than words can say, and if I never have a close relationship with my birth mom and sister, Nikki, that’s okay. I’d like to be a little closer, but am grateful for the courage and strength that it took for them just to tell me what they did.

My Brother’s Story Was Very Different – and Short

There’s plenty of other ways that the birth family search can go.

My brother, Clay, was privately adopted at birth. He is 61 years old, and had never had the same driving need to find his birth family as I did. I was surprised, then, when he found my success to have sparked his interest.

I had a bit more background on his birth parents than I did on mine. The adoption story we had gotten from our (adoptive) mom was that the birth father was in school to study law, and the mother was in school to study music or opera. They had decided together that they couldn’t take care of a child, and had gone together to the doctor who arranged the adoption.

When his DNA results came in, it took me only a couple days to confirm his birth father’s identity, without a doubt, even though he didn’t have any very close matches. He is 83 years old, and the owner of a law firm in Las Vegas – so I guess they weren’t kidding when they said he was studying law! Clay is his only son, but he does have daughters, at least 2 of which are also in law.

Clay’s birth mother was a much harder one to figure out. As I described above, you start with finding mutual ancestors among your DNA matching cousins’ family trees, and slowly narrowing it in. I was not getting hits on cousins from his biological grandmother or great-grandmother, and it was very confusing. No matter how I tried to fit him in to the great puzzle that is DNA family, for the longest time it just didn’t make any sense to me.

Eventually, I learned that the reason they had no descendants in the Ancestry database was because his maternal grandmother and all her ancestors were from Switzerland and Germany. His grandmother immigrated to the US in 1923. His birth mother passed away in 2017, so we missed her by just a year.

I found a half-first cousin in Ancestry, and this cousin’s father had been married to Clay’s aunt. That finally confirmed his birth mom’s identity. I think it took about 2 weeks to get to that point.

Clay was not really interested in contact with his biological family. We did have a few messages with his half-first-cousin and the husband of his deceased aunt, and they were absolutely shocked to find out that Clay’s birth mom had even had a child. Apparently they had been very close, but she had never told anyone, and must have actively tried to hide her pregnancy. Clay was her only child.

I’ve encouraged Clay to explore his birth father’s law firm website, and there are pictures and other info I’ve passed on to him. But he really isn’t sure he wants to contact his birth father, given his advanced age. I imagine if one of his half-siblings on his father’s side were to DNA test that he would connect with them.

At least Clay knows his heritage, and some background on his ancestors.

That’s all he needed, and that is perfectly okay.

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Finally Finding Family

Me. Very little, but me.

I was told a pretty story, growing up. It went like this…

I was given up for adoption at birth. My birth mother was 19, and already had a 3 year old boy. She was a navy brat, living with her parents. Her mother, my birth grandmother, was sick with vaguely described “women’s issues.” She was not willing to take in a second grandchild (me), and was the one insisting on putting me up for adoption.

My birth father was a gaping black hole. It is unclear if he was even aware my birth mother was pregnant when he disappeared, or he might have left when he found out. He was only described, cryptically, as “dark.” My mom thought maybe that meant Hispanic or Indian, given this was in Texas.

The agency said they tried to match babies with families of a similar appearance and heritage. They said my birth mother was mostly Irish and British, just as my adoptive mother was.

It didn’t turn out to be a good match in appearance. I was short, and dark of eye and hair, in a family of towering green and blue eyed Texans.

How much of the pretty story was true? I’ve heard from other adoptees that “the story” was often made up. The potential adoptive parents were told what they would want to hear, to clinch the deal. So it could be entirely false, or totally true, or somewhere in between.

Why does it matter now?
Because I have a DNA test being processed at 23andMe. It sat here for a while, before I sent it in, as I pondered what the possible outcomes could be.

This will sound idiotic, but when I ordered it, I wasn’t thinking at all about how I might find my birth family through it. I really got it to find out my heritage. It matters to me, where I come from, geographically. And I got it to look for answers to my multitude of health problems.

The testing kit came, and suddenly I realised it could open a whole can of worms, or even two cans, and I didn’t know if I wanted to do that.

See, as near as I can tell, no one is looking for me. I’ve been registered at online adoption registries since the birth of the internet. They’re easy to search, reach out, and make contact.

But no one has.
In 20 years.

It’s likely I have more than one half sibling out there, but they might not even know I exist.

How will they feel if I show up on a DNA test? I have no idea how it would feel, growing up in a family, and then to find, as an adult, that you have an unexpected sibling. Would you feel betrayed? Let down? Angry?

Both my daughters already have their results from 23andMe, and I’ve been poking around in them. They have different fathers, so, in looking at the “DNA relatives” they matched, if they both matched to the same person, it’s because that person is related to me.

And, wow, are there matches. A lot. Some are as close as 2nd cousins to my girls. And more matches keep turning up.

I have blood relatives, other than my girls.

I doubt you can understand what that statement feels like, unless you’ve been where I am right now. It’s not something I can put into words. I stopped thinking I’d find my biological family quite a few years ago.

I’m actually terrified.

What if they didn’t know of my existence? What if they don’t believe it (it happens, from what I hear)? What if they want nothing to do with me? What if they do? Will they be able to answer my questions, about the circumstances of my birth and adoption? Can they tell me my birth parents’ names? And in a soft whisper… Could I see pictures, of my biological mom and dad? Is that too much to ask?

All the possible outcomes are terrifying. There are forums on 23andMe where folks like me talk about this exact situation. It often turns out badly, with rejection. There are a few good outcomes.

But I have to try.

The Weight

I told my daughter, Rhiannon, the other night, as she calmed me down, after I freaked out when I found my girls have even more matches, this thing called adoption has been a huge weight I’ve carried around my whole life.

In elementary school one year, we learned about genes and heredity, and were assigned a big genealogy project, to research and chart our family tree on posterboard, with the most pictures and details possible.

I’m an Aspie – person with Asperger’s syndrome – although we didn’t know that then.

I did the only thing that seemed right. I raised my hand and asked what I was supposed to do. I explained I was adopted, and I didn’t know my family tree.

My teacher was momentarily befuddled. She told me to use my adoptive family. “But that’s not right. It’s not my genetics,” I argued.

You have to understand. Aspies have an “unusually strong” attachment to the truth and what we perceive is right, true, and honorable. Making a family tree, to be displayed, using my adoptive family, was a charade, a huge lie, so much that it was anathema.

I had to do it anyway. I remember a lot of tears. Of feeling like I was cheating, feeling guilty.

Holding my hand up and asking that question had repercussions throughout my schooling years. Someone figured out that only bastards are given up for adoption.
They never let me forget it. Even in high school, I remember the taunting.

There are other stories, but you get the idea. And there was a song that did a great deal of damage, too – it was worthy of its own blog post years ago: “Love Child”, “Bastard”, & Asperger’s

So, here I am, in my mid 50’s, and for my whole life I’ve known nothing of my biological family. I haven’t known where I come from, or who I am. It is such an odd, disconcerting, yet exciting, feeling, to know, in a week or so, that’s all going to change, when my results come in.

(And just like that, my phone went beep, to tell me there’s an email from 23andMe saying my reports are ready! I haven’t even finished editing this yet! Omg!)

Some adoptees don’t care about their birth family. I don’t know how much of that is because they “fit” into their adoptive family really well, like my (also adopted) brother did, tall and light eyed as our parents. Maybe it’s just personality.

No one has ever loved me as much as my mom did, who did everything she possibly could for me, up until the end. We didn’t become close, though, until I was an adult. I wasn’t lacking in love, growing up, but I just never felt that I belonged.

Like a lot of adoptees, there’s been this aching hole that’s been waiting to be filled. That’s as much about the countries my ancestors come from as anything.

Seeing my daughter’s list of cousins that had to have come from my side, that was a holy cow moment. I have family. Biological family. And there they are, a long list, with initials and a few names. It is both the lifting of the weight, of being without blood kin except for my daughters, and a new and great weight, not knowing how all these people will react.

Unless you are adopted, you cannot know how that feels, and I am failing at expressing it.

Figuring out who is who based on DNA tests can be very challenging, unless a very close relative (parent, sibling) has tested with the same company. Even then, they have to have opted in to finding DNA relatives. I can send messages, and hope to hear back.

It’s going to be interesting.
And exciting.
And terrifying.
And overwhelming.
And, hopefully, one day, fulfilling.
Hopefully.

On Mourning

Veta Collins, beloved Mom

I was doing it wrong, and I knew it. It was one year ago today, my mom had just died, but I wasn’t crying.

“Something’s wrong with me,” I confided, oh so quietly, to those closest to me, a week later. They assured me there was no right way, no wrong way, to grieve. That it would come, when it was time, when I was ready.

Apparently, that time arrived at 9 PM last night. I was thinking about what state of mind I was in a year ago, waiting for The Call to tell me she had passed away.

The dam burst, and finally, the river of tears flowed. I wasn’t just missing her any more – I was mourning.

All day today, I’ve gone through it all again, remembering the sad details of the time between her stroke and her death, writing them out. If I don’t remember them, and acknowledge them, how can I let them go?

I was in a very precarious state, physically, by the time my mom died, two months after a hemorrhagic stroke. Those months were a nightmare, watching my strong, capable, and independent mom being broken into a mere shell of herself. I suspect the mourning got put on hold, subconsciously, so I could recover from the toll the physical, emotional, and mental stress had taken on my own fragile body. Those of us with ME, CFS, fibromyalgia, etc, have to carefully and frugally measure out our energy use, our spoons. (See Always Counting Spoons if you aren’t familiar with this concept).

But there was little I wouldn’t do for my mom. She had always been there for me, through my many mistakes in life, always ready to pick me up and help me out. We were best friends who spoke most every day, and had no secrets.

She was also a real rarity, because she believed in me despite my illness, and supported me both emotionally and financially.

You might think any mother would support a sick daughter, but that’s very sadly untrue when the illness is ME (myalgic encephalomylitis), CFS (chronic fatigue syndrome), fibromyalgia, chronic Lyme. They are not understood even by many doctors other than a few specialists, and family, well, most family members don’t take the time to try to understand. I have a lot of friends ill with the same things, and very few have the support of their families, or only part of the family.

I was so very lucky, to have my mom until she was 89. She was still telling me about any article or show she saw where my illnesses were mentioned, still reading articles about it that I posted on Facebook, trying to understand better. She still listened to me moan and groan and complain when I needed to.

I had her, and I have my youngest daughter, who has a milder version of these damn diseases. She’s my caregiver, my best friend, my defender, intelligent and brave, and with a bit of her grandmother’s iron spine. You don’t want to piss her off anymore than you did my mom – her grandmother taught her well. I have my son-in-law here, too, who very bravely accepted the weight of being part of our family. It’s not an easy thing, being a caregiver to someone like me, mostly bedbound. But such is the power of Love.

I couldn’t get through this life without them, and I don’t know how my friends who have no family support do it.

I’ve been blessed, that’s for sure, and I’m so very thankful for my mom’s steadfast love and support. I will always love her, and I know she’s watching over me, loving me still.

Love never dies.

Shores of Avalon

Reflecting…
In some ways, I was relieved when my mom finally passed away. Seeing her the way she was, two months after a hemorrhagic stroke, ripped my heart out every day. She’d had the stroke in early September, and the months since had been filled with far too few ups, far too many downs, and devastating punches to the gut.

She was only affected physically a little, and that mostly passed. But her mind… That bore the brunt of the bleeding in her brain. That is what haunts me.

Dementia was just a word, without real meaning, until I watched, from a distance, as she slid further and further away. I wanted to go to her, in Houston, but I’m homebound with my own illnesses, and there was no way I could travel.

There were endless phone calls, trying to talk to her, and talking to her doctors, nurses, and my brother and sister-in-law, who were there. Hours spent researching, trying to understand the possibilities for recovery.

More hours went into hacking into her patient record at the hospital, pouring over the flood of lab and test results, learning a whole new area of medical terminology, translating that for family, and relaying it all to my eldest, who was deployed to the middle east.

I’d already spent 4 years being my mom’s patient advocate from a distance, intervening with doctors, calling, faxing, emailing, tracking her labs, researching her meds and demanding changes from doctors who were too busy to spend the time I was.

She was 89 years old. Every problem was written off as “just getting older.” How angry that still makes me. If they’d paid more attention, they’d worked harder to control her blood pressure, and sent her to the ER when her BP was incredibly high and she had a headache, the outcome could have been different.

After the stroke, my brother would bring the iPad to the hospital, so we could do video chats. They were difficult from the start, seeing my mom’s confusion, anxiety, distress, and fear. She didn’t understand that she’d had a stroke, where she was, or what was happening. Sometimes she knew me, sometimes she didn’t. The nurses said she was often combative, angry and afraid, cussing them out while they tried to help.

As the days turned to weeks, getting her to eat, drink, and take her meds, became nearly impossible. She went from hospital to nursing facility and back numerous times, with new issues cropping up, one after the other. She often would wander around, and had many falls.

The last video chat we had haunts me. My brother propped the iPad up on the table, so I felt like I was there, but I don’t think she even looked at me. Her face was gaunt, and her always beautiful skin was marred by large deep purple and green bruises, with more on her arms and legs, from her falls. Her eyes stared blankly, empty except for anger when my brother tried to get her to eat her meds-laced ice cream.

She wasn’t there. The spark of Love and Life that animated my mother, spilled from her over me for my whole life, was gone. I knew she would be appalled at her condition, and would never have wanted to go through all this. I cried that day, to see her so diminished, bruised and battered, who had always been so strong and imposing.

Making the decision to put her in the gentle hands of hospice care that day was easy. The doctors now said she had terminal dementia. Hospice would see that she was comfortable, allowed to slip away naturally.

The day after hospice took over, she went to sleep, and became unresponsive. My brother showed me her nice room on chat, with all her furniture, as she laid still, on the bed. No more IV’s, no more prodding her to eat, no more distress. Resting gently, she slipped deeper and deeper into a coma.

I thought she would pass away quickly after that, but she was stubborn to the end. Every night I went to sleep, so lightly, in case The Call came in. A kind-hearted hospice nurse told me it could “be a while,” and he had one patient who went 33 days in a coma, in what is basically a hibernation state. I had no idea someone could linger that long without water or an IV.

The waiting was hard, and very busy, helping to arrange a funeral in her tiny home town of Loop, TX, and keeping folks aware of developments.

My ill body was not taking all this well, and I was having some major physical issues. Too little sleep, too much laying in bed wondering how she was in the middle of the night, too little eating… I tried desperately to stabilize my own system.

My mom lasted 6 days. The Call I’d been expecting came moments after I woke up on my own, alarmed. We’d both always known when the other was going to call, and this final call was no exception.

Gazing over the mountains my mom had loved so much, I watched the dawn light creep into the day, as I had just enough time to say a final goodbye.

I felt her then, and I’ve felt her presence many times since then. And I always will.
She was truly my guardian angel in life, and nothing’s going to stop her from continuing to look out for me.

This, I know.