When Your Doctor's Office Doesn't Get the Memo

[texting-source]

I got a text a couple of weeks ago that felt like a punch to the gut. "Alamanda hasn't been to see the doctor in a while. It's time to set your appointment." Something like that. Now, I know my doctor has been with us since before my first was born. He's great. But he recently turned a lot of work over to his nurse, who is new. She didn't know she was inquiring about my baby who died 12 years ago in an accident that killed my innocence and ripped out my heart. She didn't mean to send a trigger. But in not checking the file, she sent me a major trigger. 

[Fixing up a house-source]

Then, a short time later, I had to text back because of a UTI. I haven't had a UTI since I had one of my last miscarriages. Pregnancy usually brings UTIs, not working all day on fixing up a house we built 3 years ago, just so my sister could trash it in those short years. Oh, and not hydrating enough in the process. So when the blood came, it reminded me of a miscarriage. And the diagnosis reminded me of pregnancy. Yeah, that's another fun trigger. Brings everything back, so I have to stare at it. 

[The nurse comes in-source]

And when I went to talk face-to-face with that same nurse who sent me the misdirected text, she didn't know my history either. She expressed sympathy but no knowledge of my 16+ miscarriages. Trigger.  One would hope that your doctor's office and any reps thereof would get the memo on stuff like this. It's easy to trigger someone when you blunder into a person's health history unprepared.  I'm trying not to get bitter about the little things. It would just be nice if someone did her research. But if one hasn't gone through it, it's hard to know what a landmine such a history is. I try to remember that. It can just be hard some days. 

When Your Greatest Fear Takes Another Shape

[My former greatest fear--source]

My greatest fear used to be spiders. However, after I lost my closest brother and my baby and had 16+ miscarriages in a row, I learned there are much, much worse things to fear than (most) spiders. All spiders can usually do is give you physical pain. Emotional pain that comes with the loss of family members makes a mere spider bite, even one that lands you in the hospital, trivial by comparison. A spider may leave holes in your flesh that will most likely heal. The world-shaking loss of loved ones hollows you out and leaves no part of your world untouched. 

[My Disney Princess: Source]

For 12 years, my greatest fear has been to lose a family member. People talk about helicopter parenting derisively with reason. But my husband and I became predator drone parents to defend ourselves from ever dealing with that kind of catastrophic loss. All of the emotional scarring of loss was made much, much worse when CPS attempted to destroy my family with false accusations that tried to tear us apart. That, alone, is a very long, ugly story some would find farfetched, and some would nod along to because they've had their own experiences with that kind of nightmare. It doesn't help that my brain became a worthless fog after my catastrophic losses. I understand brain fog is pretty normal. That's right. I've become Marlin and Dory from Finding Nemo. I don't recommend it. It's stressful and frankly terrifying. It's exhausting to live in a world where not just loss but any kind of loss becomes a very real possibility at any time. 

[Another kind of loss--source]

So when a family member recently nuked their family with the big D, becoming far more destructive than necessary without careful thought to the consequences, I felt like a brand new black hole tore into my carefully duct-taped semi-comfortable reality. The way this family member destroyed their family brought threats of CPS way too close to home. It's a long, ugly story that has only begun. There are not likely to be any winners, only losers.  And it brought back all the pain, all the trauma of my past.  Worst of all? We come away from it wondering how many family members may be lost to this black hole. The fears and traumas that seemed carefully buried have reared their ugly heads again.  

[Heartfelt prayer--source]

Just thinking about it leaves me in shock. I don't know how to emotionally tread through this minefield. I didn't cause it, but I have only begun to ponder what consequences these events may have. All I can do is pray for all involved and hope that's enough to bring a miracle. 

Watching Another's Loss

[Teddy bear for child loss-source]

Many years ago, I met a fellow traveler, a friend of my sister.  She had one beautiful daughter and had a son who died just before he was to be born.  She impressed me with her firm faith, how she had even spoken to her unborn, how she knew he was right there with her and often saw signs of him all around her.  Her loss was so much fresher than mine, yet she seemed more advanced in the healing path than I was then and even than I am now.  She was a pillar of trust and belief to me, one who just knew she would hold her baby again and who held her angel close to her even as she couldn't hold his physical body.  

[I can't even see her face without pain.]

Meanwhile, I still feel like a lost soul.  The way I survive day to day is to not think of my angel, not look for her, not do the things that give this friend comfort.  Because when I look at images of my beautiful Alamanda, it takes me back down the dark path of thinking of people who tried to steal my family, of DCSF agents who created a false image of us through intentional deceit in order to destroy my family.  It takes me back to those months when I almost lost everything, when those I trusted turned on us, and even family members invented lies to try to tear our world apart.  It's at those moments I realize that part of the pain is still an open wound, that I'm not sure how to go about forgiving those from whom I will never hear an apology.  

[Surrounded by angels-source]

Allamanda's image also brings me back to miracles when the Lord, Himself, promised angels to help us through.  He promised and delivered the words we would need to redeem our names at just the right time. His Spirit in the room brought tears to the eyes of some of those who heard us explain our side of the story and the truth in the face of lies.  It brings me to the moments when the enemy intentionally laid a trap for us, telling us we wouldn't need a lawyer the day we could have gotten one and then sent us the paperwork the very next day, to ensure we would not get the legal aid we needed for that Monday morning.  Yet the Lord sent us someone to defend us. I see the pain, but I also see the miracles.  

[Grudges like poison-source]

These complications do not mean I can't be healed like my sister's friend. But there's a lot of healing that still hasn't happened, likely because I haven't yet figured out how to let the pain and anger go.  I know the theory that keeping a grudge is like drinking poison and waiting for the other guy to die.  Holding onto that pain will never hurt them and only will hurt me.  But just when I think healing is all but there, a trigger slaps me in the face and helps me realize I'm not there yet, even over 11 years later.  

[Expecting..but what to expect? Source]

This friend, after years of miscarriage and loss with which I can relate, finally became successfully pregnant a few months ago.  She posted her joys and her progress with her new and exciting pregnancy.  Her now-teenaged daughter was giddy with delight.  Their little one came...stillborn.  Another angel to join the first and all the ones in between.  And once again, they met the loss with pain but also an outpouring of love, an understanding they will hold this baby, too, again.  

[Another funeral. Source]

I would be destroyed, absolutely destroyed.  I only attend funerals if I can't avoid them.  Maybe I took the coward's path in backing away from loss after loss after loss.  After 15 miscarriages, I realized my body would not carry another baby, so my husband and I prayerfully gave up.  When I realized the sentence "I'm expecting" didn't end in "baby" but ended in "blood," I knew we were not meant to hold any more live children until the Lord comes again.  We accepted the gift of the angels and children we've been given.  We know we'll see them, hold them one day and gave up on the dream of our rainbow. I was delighted this friend would be greeting her own rainbow, having no idea that she'd be having a funeral instead.  

[A candle for death and rebirth-source]

I saw those images of smiling faces as they held heir baby with blue lips and purplish face and knew I'd be shriveling inside. There would be yet another jagged, bloody hole where my heart should be.  I don't know how they do it, especially this time of year.  I know there's so much more to the story than I could ever see or imagine.  I wish I could be joyous like that in the face of loss.  For now, I'll have to be thankful to know such heroes exist and that we can all have hope in holding our loved ones again, thanks to Christmas and the One we celebrate this season. 

Another Miscarriage?

[Baby shoes, source]

16 years ago, I had my first child, conceived on our honeymoon, even though we figured we'd wait a bit before we'd be ready to add a third party since we were both older when we got married. We wanted a little time together first. God had other plans, and my boy joined the party. 

[Girl booties-source]

14 years ago, I had my second child, conceived the very first weekend we even tried. I was giddy with delight the day I found out I would get my girl. It seemed our plan of having four beautiful babies in a row was right on track. Even though my husband was 38 when we had our first, and I was 28, we looked forward to joy with our armful of little ones. 

[Rose-Colored glasses fading-source]

12 years ago, we had our first miscarriage, and our glossy, rosy-eyed view of this baby-making process faltered. Devastation set it. Loss apparently COULD happen to us. Then, we tried for 11 months to have another baby. It was a struggle and a bit disappointing. But no worries. Everything would still be fine. 

[Miracle baby booties-source]

11 years ago, we welcomed our second daughter, precious Alamanda.  Her life was a miracle because we found out with her we were homozygous for Kell antibody, which kills through anemia almost every pregnancy it touches. All of that waiting and praying was worth it. She was tiny and honked like a gosling. But she was our little miracle, and we loved her. My little girl was beyond delighted to have her very own baby sister born just after her birthday. Our boy was mystified by our weird taste in pets because he didn't quite register babies as people. We were back on track. 

[Loss with a capital L-source]

Four months later, Alli was gone. I'd rearranged my life, our lives around her, and she rolled into a pillow that was nowhere near her, with unexpected and inexplicable actions she hadn't shown herself capable of before. She suffocated, and the doctors couldn't save her. And just like that, she was gone. My perfect princess number two went Home to her Father in Heaven, and we were left reeling. Not only could loss happen to us, but it was becoming a pattern. 

[Angel statues-source]

For the next several years, I dreamed of completing my perfect family. I yearned for that perfect rainbow baby, so I could once again count fingers and tiny toes. Instead, time and time again, no sooner did I get a positive pregnancy test than I'd also get a still, silent ultrasound or blood to show my dream of a rainbow had fallen into darkness again. Two or three years ago, we prayerfully decided we were done trying for a rainbow. We had 15 little angel statues representing 15 miscarriages on our angel shelf but only our first two children to hold.  

[Only babies allowed are cats-source]

I've come to terms that we won't hold any more babies until the Lord comes again. Once, my kids would have been delighted to pick out a name for a new little one. Now, they would vote me off the island if I even suggested the idea. They're teenagers with no interest in little ones unless they have four legs and fur or scales. 

[When the body is broken-source]

I missed a period recently, and when no symptoms came, I decided it must be the beginning of menopause. I actually viewed it with a kind of relief. I know symptoms pretty well by now. I've been pregnant 19+ times. After the second month, I even took a test, just to bring myself peace of mind. But the next day, I had what I'm pretty sure was yet another miscarriage. I'm not even sure how to feel about it. I don't feel the devastation I once did. Just a hollow echo of the melancholy I used to have every time. I'm more numb than anything. Too much loss is too much. 

[Through the glasses darkly-source]

I'm thankful I can feel empathy for those who bury a baby or have a miscarriage. But it's a hard thing when rose-colored glasses become sunglasses, where darkness is all you see. I am also thankful to mostly have peace with the whole situation. I remember the pain of fresh loss and can reach out to those who are new or at least newer to the empty arms club, also called parents of angels. I'm also thankful to know I will be able to hold my little ones again, thankful for the knowledge that families will be reunited again and that loss is not forever. In the meantime, the wound is still there. The pain is less acute, but I will always, at least in this lifetime, be a mother in mourning.   

Unexpected Reactions

[Triggers of Christmas-source]

There are certain things someone who hasn't lost a baby would see as mundane.  Yet, those things may trigger someone who does know that kind of catastrophic loss. I've responded to little things like blankets, empty swings, Christmas songs about babies, kindergarten graduations, pregnant women, and so many more little things I never would have expected. It's hard if not impossible to predict those triggers for an outsider, yet they can even take the grieving one by surprise.  

[ultrasounds-source]

For instance, one may see ultrasounds of babies as perfectly normal, not meriting a thought because they are so common.  Yet, to someone like me who has lost 17 babies in a row (a miscarriage, a child death, then 15 miscarriages with no rainbow to be seen), it's often a trigger.  I'd just be scrolling FaceBook, and there was a post filled with excitement and anticipation.  Most could say, "Congratulations" without a second thought. I'd have to wipe a tear and scroll past quickly.  Recently, I went in for a regular checkup. I was asked if a novice at ultrasounds could use me as a test run for her skills.  There was a time I may have found an empty space inside myself triggering.  Now, a fetus and impending loss would trigger me more. 

[doll-source]

Dolls can be very triggering, but possibly not for reasons you may expect.  We have a doll that looked so very much like the baby who passed away.  I've often felt twinges looking at it.  But the doll in the Halloween store that looked like my baby post-autopsy, created for ghoulish entertainment, made me swear off Halloween stores for a long time.  It's only recently that I can periodically step in since I haven't seen one since.  Recently, I saw an ad for a doll made to look like the image of a lost baby or a baby long since grown.  To me, it looked like a dead baby.  Once again, I reacted far more violently than I would have expected.  

[Minefield-source]

These reactions have gotten increasingly rare over time, but the world still feels like a minefield after a war.  You never know when you may step on a bomb, and you pray it doesn't happen at the worst times.  I am thankful to know I will hold my babies again, that families are forever.  But that doesn't stop those mines from creeping \up on me, not entirely.  I wonder if their disappearance will be a sign that I've finally healed.  

Another Birthday Come and Gone

[A candle for her birthday-source]

I'm not sure why my angel Alli's birthday passed so gracefully, almost (but not quite) painlessly this time.  I always brace myself for a tsunami of pain that these dates--her birth and angelversary--always bring with them.  I expect the worst.  But this time, I was so busy leading up to and through her birthday, that it mostly just played in the back of my mind.  

[Hairy Baby]

Part of it may also be that I do have babies.  I never got my rainbow baby, the baby after loss.  I only had miscarriage after miscarriage to the point that I lost count.  I think we had somewhere around 15 before I gave up trying.  But I have filled the hole she left behind with fur babies, small, loving, friends that are much easier to acquire than a human baby.  I adore my cats.  I love my older dogs.  But when I think baby, I think of my Pom Bean, who I raised from birth.  He's my faithful, adoring baby who keeps me the busiest.  This really hit home when he was gone for a day to get his baby teeth pulled, and the house got so quiet.  

[Busy-source]

Obviously, a dog or cat cannot truly fill Alli's place.  A human baby couldn't do that, either.  But between working full time plus a side job and helping with my teenaged kids' needs (since they're home much of the time on Zoom) and writing and caring for my pets, I scarcely have the time to think about my loss and pain.  

[Angel Food Cake for the broken heart-source]

The significance of the date really hit home twice: once when I was writing her FaceBook birthday tribute and once when we were throwing Alli's brief angelversary party by eating angel food cake and going through her baby book.  I'm glad we have these traditions, or I'd wonder if something was wrong with me, that I'd forgotten her or something.  I don't know how I could.  It does make me wonder if there's a third reason that the day wasn't so hard: have I healed?  Is that even possible?  I'd like to think I have.  But there are moments that tell me I'm not quite there yet.  I guess I'll know more when her angelversary comes. 

Finding Kinship with the Past

[My Kell angel, who left footprints in my heart.]

The nature of my enemy

 When I was pregnant with Alli, my angel, I tested positive for Kell antibodies.  Not just that, but we learned my husband is homozygous for the Kell antibody, winning a most unfortunate and undesirable genetic lottery.  What does this mean?  It means that my body would treat every baby who inherited Kell like a disease, and they were all going to inherit Kell.  We were told 8% of humans have Kell, and of those, 2% are homozygous for it.  Talk about crappy luck.  The body will attack the baby like a disease until he/she becomes anemic and has to be induced or death will result.  The usual pattern for Kell is the first child is born without a problem, then the body becomes sensitive to Kell.  Every baby after that is likely to end up anemic, usually to the point of death.  I read about a study in the 80s.  Of 6 women who conceived with the Kell antibodies, 6 babies were lost.  It's a lot like the Rh- treatment except there is no cure, no treatment, no solution except to watch the baby's skull and transfuse or deliver early.   

[My Kell Antibody Curse]

How it Happened

My boy came without a problem, of course.  My first girl didn't have any problems either.  The only thing I can imagine was that because my boy came a month early and had to be induced, somehow, my body didn't get with the program.  However, by the time Alli came along, she triggered the deluxe treatment.  I had to travel to a hospital an hour away every 1-2 weeks from the 20-week point on, until they induced her at 37 weeks because she was safer out than in.  Of the 15+ miscarriages since, none has made it far enough along to have been affected by Kell.  We wonder if there may be some kind of unknown antibody or other problem they don't test for that caused it.  We'll never know because we've given up the battle.  

[Looking back through family lines]

Looking Back

We watch my husband's family history line for possible Kell.  If they had one or possibly two children, they're great candidates for Kell.  Obviously, since my husband is homozygous, it had to come from both sides, both the Swedish Finn side of his Finnish mother and the Scandinavian/English side of his American father.  We do periodically find a family that makes us think Kell.  Obviously, we'll never know.  

[Henry VIII]

Not My Hero

Imagine my surprise when I was reading up on Henry VIII and learned that some historians believe the main reason he had such a hard time getting heirs from his wives was because of Kell.  He consistently blamed them, especially his first wife, but it was very likely because of him.  I never expected to feel any kinship with this fascinating but notorious historical figure. I can't say this makes me feel empathy for most of what he suffered and/or inflicted on others, often because he blamed them for all that went wrong in his life.  But I do feel this strange connection because I get the struggles of hoping this one, this pregnancy, will be the one, the one you get to hold and raise. I'm not sure how to feel about this connection except that it makes me feel at least a little less alone in the struggles we've had, even if I don't love the company.  I'm just thankful for the two we can still hold and for the knowledge that we'll hold them all again.