Book Review by Deborah: Weave of Destiny

Weave of Destiny, by Ken Lefkowitz, chronicles the story of Sheila and Ken as they navigate their way through pregnancy loss, adoption, and successful pregnancy. It is interestingly told from Ken’s point of view. He tells their story through the lenses of courage, hope, and resilience.

Their story starts in the Vietnam War era. What struck me most was how differently the medical profession treated women, miscarriage, and loss of a newborn during that time. In one case, the doctor did not reveal to Sheila the status of her pregnancy. In another case, Sheila was not allowed to hold her deceased child. Clearly, a lot has thankfully changed since then.  I also found encouraging to see the changes in doctor-patient relationship and the advances in medical technology as the story progressed.

In this story strength and “moving on” are stressed. As such, I don’t think it adequately addresses the need to process grief. There was no mention of seeking outside professional help to help process what they were going through. But I think this was a function of the times—people just did not seek help nor was any recommended.  Luckily, mental health is now considered as important as physical help and many resources are available. We are blessed to have organizations such as Through the Heart to support those who have suffered a miscarriage.

While only addressed once, there was an implication of a woman’s “guilt” in a miscarriage, as if it were somehow her fault. Hopefully, we have moved beyond this. I think this sense of guilt also led women to not share their stories and find support. There is one beautiful example in the book of what Ken’s sharing their story led to.

Having gone through the adoption process almost 30 years ago, I found the author’s description of the process they went through factual. While not as difficult a process for us, my husband and I faced similar hurdles in finding an agency which would work with us.

I was amazed by Sheila and Ken’s strength and gratitude for what they have. Ken shares their story in a heartfelt, very readable book. However, I was also angered by some of the hospital policies and lack of support available to Sheila and Ken. Little was made of the opportunity to provide closure for the little lives lost. All in all, it was a revealing look at where we were and how far we have come in dealing with these issues.

Deborah experienced the loss of her grandson, Liam, in January of 2019. She has two grown children, both adopted, and two grandchildren. Deborah lives with her husband, Keith, and dog, Kovu. Now that she is retired Deborah volunteers with several heart-health focused organizations. She is the author of the book “A Journey of the Heart: Learning to Thrive, Not Just Survive, With Congenital Heart Disease.

Getting Through January by Deborah

I am glad to see January come and go. January has become a difficult month for me. I used to greet the new year with anticipation and hope and looked forward to what the coming year would bring. Plans were made, resolutions were set, and off I went.

That changed for me two years ago in January when our grandson Liam was stillborn. It was a phone call every parent dreads—my son calling in tears to let tell us this horrible news. I was frozen. We somehow muddled through the next few weeks and felt the pain and grief of loss.

What helped me during this time was the closeness and presence of family. We were able to cry together, hold each other, and grieve as a family. I can’t imagine having to go through this during the pandemic. I would find the loss of human interaction unbearable.

I find I have to struggle, particularly as I age, to find the glass half full. Every doctor’s visit seems to bring some other issue to deal with. I worry about my children, even though they are now adults. I worry about my grandchildren, hoping they will grow up in a world that is safe, clean, and full of opportunity.

I’ve come to painfully acknowledge that the older I get, the more loss becomes a part of my life. Sometimes it’s expected, like the loss of an aged parent, but sometimes it’s unexpected, like the loss of a child. I realize that I am part of the oldest generation in my family, my uncle having passed several months ago.

I am working on presence and acceptance. I realize that I spend too much time worrying about tomorrow and thinking “what if.” I need to consciously greet each day like the new beginning it is. I also need to accept what trials and tribulations I face and do my best to deal with them.

Practicing gratitude has helped me realize how truly lucky I am. My son and his wife were blessed with a “rainbow baby” this spring. I now have two beautiful grandchildren and one angel in heaven.

To be sure, it’s hard to be hopeful and thankful in the midst of a pandemic. But by staying the course and realizing that there is always darkness before the dawn, I believe we can get through this. I so can’t wait to hug my son, daughter-in-law, daughter, and grandchildren again. This too shall pass. Welcome February, and then hopefully spring!

Deborah experienced the loss of her grandson, Liam, in January of 2019. She has two grown children, both adopted, and two grandchildren. Deborah lives with her husband, Keith, and dog, Kovu. Now that she is retired Deborah volunteers with several heart-health focused organizations. She is the author of the book “A Journey of the Heart: Learning to Thrive, Not Just Survive, With Congenital Heart Disease.”

To my little one

I thought God had given me the greatest gift. I found out December 23, 2020  that I was going to be a mom again. It was a surprise and I couldn’t think of a better gift to receive for Christmas. 2 weeks later I began to spot and I thought it was normal. That spotting turned into heavy bleeding and I rushed to the ER. My ultrasound showed an empty gestational sac and it was only measuring 5 weeks. I was placed on pelvic rest but the nights were long and the cramps mixed with anxiety never stopped.

Neither did the bleeding. I went back to the ER on Saturday January 9th and they confirmed my worst fear. I was miscarrying, and there was nothing that could be done. I went home and on Sunday January 10, 2020 I lost my little one. The feeling of being numb has now given way to complete devastation and emptiness. I will never get to hold you or hear you cry. The sound of you laughing while I tickle you will never be a joy that I get to have. I just have to say goodbye somehow, yet I don’t even know how to do that. It wasn’t suppose to be a goodbye you were suppose to join us in this life. To my precious baby I’m so sorry we didn’t have more time. Mommy loves you and my heart yearns for you.

Postpartum: Pandemic Style by Kate

After the birth of my first child, I had a pretty smooth journey through the first few months. She had a short NICU stay for a seizure episode, so that was terrifying, but after she recovered, with the support of my husband and extended family, I was able to navigate the exciting and sometimes scary transition into motherhood. I had the normal ups and downs of life with a newborn. If I ever was feeling down, I could easily pull myself out of it after a hot bath or a jog around the neighborhood. I have always been a pretty calm individual. I have my dramatic outbursts and occasional “crying over spilt milk” episodes, but I generally am able to overcome slumps.

I wasn’t too surprised after having my daughter about how I felt. The feelings are strong and real and come out of nowhere. I had hormone shifts after my two miscarriages so I feel as though I was prepared in some sense for the swings of emotion.

When I was pregnant with my son, I told my husband that this time would be much smoother and easier. That’s what everyone told me. The 2nd time is easier.

Well, they were right about the birth. My son came right out. I hardly pushed. He pushed himself out.

What we never could have anticipated, not in a million years, was I would be having the baby a few months into a global pandemic.

I was so on edge when we came home from the hospital. My parents had watched our daughter. When we came home I didn’t let them touch the baby. They said hi to him with masks on and then they left. It hurt my heart so much to treat them that way, but at that point we just didn’t know which way was up, so I needed to conduct myself the same across the board. I had to treat everyone as if they had the virus, even those I trusted the most.

Raging postpartum hormones combined with the fear of coronavirus had me on the edge of my seat for a while. I was and still am mostly worried about my parents and my husband’s parents. With more knowledge came a sense of ease. We knew how to be safe and we had gotten into a predictable routine that pleased the babies. Late in the summer, I began visiting my mom’s house. My dad is a physician in an oncology office, but he had been so meticulous and careful and his office had had no outbreaks, so I trusted he would be okay. I didn’t wear a mask in their house and they didn’t wear them either because we trusted each other. I never went anywhere, not even stores. My husband and I get home delivery. Their house was our safe oasis.

December 18th, I stopped by my mom and dad’s house with the babies for a couple hours like I had been doing. The next morning, December 19th, my dad called me. He had tested positive for Covid-19. We were on high alert. He had been holding Zachary in his lap, face to face for at least 15 minutes or so. I began to tear up. I asked him how to move forward. We were to quarantine and I would be tested in about 6 days. Considering the timeline of everything and how safe he had been at work, he is convinced he caught it at the grocery store.

I had panic attacks in the days that followed. I had myself convinced for a couple days that I had it and I was going to give it to my babies. I wore a mask around them. I felt nauseous, weak, feverish. I kept saying to my husband that I had tried so hard to keep us all safe and I was going to be the reason that we all got it. He reassured me that going to my mom and dad’s house was my outlet and I shouldn’t feel guilty for doing so. He assured me we would all be okay. He assured me my dad knew what he was doing and knew how to tackle the virus. Despite his positive reassurance, I had nightmares of my dad going to the hospital and never coming home. I had visions of him on a ventilator, like the pictures they show of people on the news. The fact that my hormones are still jumbled from birth didn’t help. My son has started eating solid foods, so he isn’t nursing as frequently. I can feel in my bones that my hormones are changing. I think that process only fueled my big feelings.

Thankfully, my dad recovered and my husband and my babies and I are all fine. Miraculously, my mom never caught it. As soon as he woke up with symptoms, my dad had my mom wear a mask and quarantine in the house from him. They spent Christmas separated from everyone and they slept in different rooms until he was certain with a verified blood test that he was no longer contagious. It was a horrible holiday for all of us, but we were grateful we live close enough that we could at least drive by and wave from the car.

It was a rough road for my dad. He developed symptoms fast and hard. He had heard through medical colleagues about the monoclonal antibody shot and was able to get it at one of the local hospitals. Most of his symptoms dissipated quickly after getting the shot. He couldn’t believe it. He thought he was on the road to recovery, until harder symptoms hit. Shortness of breath was an alarming symptom. He went to the ER and had a CT scan of his chest. They found double Covid pneumonia in his lungs. He told me they call it Covid pneumonia but it’s blood clots forming on the lungs. He said that is why he was feeling shortness of breath. He knew he was at the stage of the virus when his vital organs were all inflamed.

Thankfully combined with his medical knowledge and the help of my two brothers who are physicians (one of whom works directly with Covid patients) he was able to get on the correct dose of steroids and blood thinners. He was unwell for at least 3 weeks. He is just now getting his regular strength back. I can tell he is still on edge emotionally. He told me he has had bad dreams that he still has it and he infected everyone. I think the mental fatigue the virus put on him and all of us will take some time to clear up.

After this major scare, we are now in a new groove and we are even more educated on how to be safe. I feel less anxious, especially since there is a vaccine that is proven to work and that my dad has recovered and now has some sort of immunity. We were able to safely gather for a late Christmas celebration with my immediate family. My dad was able to hold the babies safely once again.

I feel less anxious, but I am still on guard. It comes in waves.

There have been cases of children presenting with dangerous symptoms 4-6 weeks after a Covid exposure. It is rare, but I am not taking any chances. My kids are 4 weeks from exposure and so far have been fine. I will continue to monitor any little change closely. It is not lost on me how incredibly lucky we are.

As the pandemic and my hormones change, I hold on to the loving, constant support I have in my household.

So much for this time being easier.

-Kate Ells

Honoring Your Loss, Part 1 by Angela

At this point in my life I can say with near certainty that whenever I meet someone new, one of three things will happen. 1. They make a remark about how young I look. 2. They have the audacity to call me Angie, after I introduce myself as Angela. 3. They tell me I look just like their distant relative/neighbor/friend and then show me a picture of another young, often petite, blonde, white girl. The latter leading me to conclude that I am not only ordinary looking, but that I, as a person, am ordinary. That I am common and average and regular. So it did not surprise me when I realized that when I share the stories of my miscarriages I find myself bookending them with phrases like “I was *only* 9 weeks along” or “so at least that’s *all* that happened.” I know that sounds like a leap, but it’s not.

It may sound cliché, but it bears repeating that everyone’s pregnancy loss is different and no pregnancy loss is more or less real. No matter how soon after your positive test, no matter how few symptoms or how little physical pain you experienced, and no matter how it compares to other people’s experiences, it is significant. And in case you, like me, think too little of your pain, consider these words from the wizarding world’s favorite headmaster.

In a purgatory-like meeting place, Dumbledore welcomes Harry after he was on the receiving end of a killing curse:
[Harry] “Is this real? Or has this been happening inside my head?”
[Dumbledore] “Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?”

Your loss is real, and no matter how common it feels some days, it is never ordinary or normal or unworthy of remembering.

I’ve been intrigued by Dia de los Muertos since I saw a single aisle endcap of decorations for it next to three aisles of Halloween decorations at Michaels years ago. As someone who went to their first funeral at 27 years old and has yet to lose someone close to me, I was curious about an entire holiday devoted to death. Maybe, less curious and more uneasy. As far as I could tell, or Google, nothing actually happened that day. No parade, gift giving, begging for candy or egg hunts. Just candles and a shared meal. Then there was the similar but less colorful version, All Souls’ Day, that I had also not heard of until young adulthood.

The culture I grew up in was nearly devoid of ceremony. Regularity and predictability, sure, but meaningful ritual not so much. Looking back I realized all the holidays I celebrated centered around Jesus or candy. Wait, that’s not fair to the 4th of July or New Year’s Eve. Those are all about fireworks.

It had never occurred to me that the human experience was much more than flaws to fix and pain to conquer. Looking back, it’s no wonder I couldn’t comprehend a day reserved for grieving and celebrating – for feeling and acknowledging.

It wasn’t until my miscarriages that I started to understand how much power lies in holding space and time to simply observe. A power I could feel only in opposition to my insistence to avoid and forget.

This past August marked the second anniversary of my first pregnancy loss. As it approached I felt a new longing to do something. I had no idea what, but the closer August 4th came the more I felt compelled to be prepared for it. Sadly, it came and went with a short, but slow, exchange of mutual heartache between my husband and I. Something like, “Oh, hey today is August 4th.”
“Oh? Oh… right. Yeah. It is.”
“Yep.”

For the next few weeks I thought about that often. Was I supposed to grieve better? Should I be more sad? Am I not supposed to talk about it?
I shouted at my own gut instinct, “What did you even want me to do?!”
“Something!” it said.
I felt so, incredibly, weak.

I was on the verge of tears for days after my internal voice reprimanded me so. Then, one Saturday morning, my husband and I were walking through Trader Joe’s (of all places). They had small Dia de los Muertos themed planters. Bright, colorful, decorated skulls holding succulents. We both stopped. Him, for the skulls, and me because there it was again – Dia de los Muertos. Evidently mainstream enough, or unfortunately appropriated enough, to be represented in a grocery store. An immediate pang of sadness hit me, but also a mysterious sense of understanding. We picked out two and I spent days researching All Souls’ Day and Dia de los Muertos.

I wasn’t brave enough to make a plan to observe the holiday, for fear that someone would accuse me of either appropriation or making an unwarranted big deal of my loss, so I let my longing and curiosity fade away. The morning after a late night celebrating Halloween with a bonfire, candy, and Harry Potter, I sat in the still morning darkness clutching my coffee. I savored the slow waking in silence, staring blankly at our new succulents on either side of our TV and realized… it was today. Day of the Dead.

After one last deep dive into the history of the holiday, I decided I was doing it. I didn’t have the right candles or the tablecloths to make a beautiful alter. But I decided some five-year-old, dusty candles in storage and the console table we never use would work. I never got a copy of the ultrasound from my second pregnancy, but I had the picture of the positive pregnancy test I sent to my husband. “Good enough,” I thought. I laid it next to the ultrasound of our first loss, lit a candle for each, and arranged our Trader Joe’s planters on either side.

So there they were. Our babies. The ones without a birthday or name. Whom we loved and I bore, but never met. Who barely made it into this world, yet definitively left it.

I let the candles burn all day. I packed some moving boxes, washed dishes, and embroidered a little. Each time I walked by my last-minute, yellow alter I smiled or cried. But most importantly, I remembered.

Arielle’s Story

I had a chemical pregnancy in October 2017. It was my first pregnancy and unplanned, but we were very excited. That excitement did not last long as the pregnancy ended quickly. However, we tried that same cycle, and I got pregnant with my daughter. She is now 2. I had a relatively uneventful, full term pregnancy with her. She is now the light of my life.

When she was about 13/14 months, I got pregnant again. It was very much a surprise, but after the initial shock and fear wore off, we were excited to have a sibling for our daughter close in age. The due date was 6/20/2020. I told 3 of my closest friends and that is it. When I went in for my ultrasound at 10 weeks, I was told there was no heartbeat and the baby was only measuring 6 weeks. That was November 2019. I was devastated. I started miscarrying later that week. It was a long process, and took about a month for my HCG level to get back to 0.

My husband and I decided not to try again right away, as the timing just wasn’t right. Within a few months of my loss, my 3 closest friends (the ones who knew about the loss) all announced to me that they are pregnant. I was happy for them, but also devastated and so sad for myself. After several months of therapy and working through my anxiety and depression, my husband and I felt that the time was right for us to try again.

We started trying in August 2020, and I got pregnant right away. This pregnancy was filled with so much fear and anxiety. Around 6/7 weeks along, I just felt this overwhelming anxiety that something was not right and the same thing was going to happen. I begged my OB and PCP to get me an ultrasound, and they did. I went in when I thought I was 7 weeks 5 days, but baby was measuring 6 weeks. I went back 10 days later, and there was no heartbeat and no growth. That was yesterday. I started miscarrying later that day.

I’m beyond devastated. I feel like such a failure. I know it’s not my fault, but I can’t help but feel like there is something wrong with me, which makes it my fault. None of my friends have experienced loss, so I feel so alone. Doctors are now using the word “infertility” and that just makes me feel so inadequate.

I really want another child. I want to give my daughter a sibling, but now I fear that I can’t. I know I should be happy because I have a beautiful, healthy daughter, but this was not the life I had planned for. Sometimes I feel like if I disappeared the world would just be a better place. I try not to think that for my daughter, but I can’t help it. I feel like I want to try again immediately, but I feel like I won’t survive another loss. Doctors want to start testing to see if there is anything wrong medically, but I feel like my life is passing by, and I’m not getting any younger (currently 29). I’m just struggling to accept this is how my life may turn out.

-Arielle
Boston, MA

A Letter to Rosary

Say goodbye to our little angel

Name: Maria-Rosary Nguyen

Dated: Aug 14, 2020 (just 18w5d )

Our baby, our little angel, you come here very lightly and quietly, then you have gone very quickly. It is really sad and big suffering for all of your loved ones.

We don’t understand the reason why, and we always wonder why God did work like that? Because we believed that you had been here with us as a special gift from him.

We love you before we know you, our baby.

We don’t know what we will do to get over this now, except to keep trusting in God faithfully.

There were a lot of tears and prayers. Only hope that you shall be healthier and happier in the new world.

Be safe by God and Virgin Mary, and by the Holy Spirit.

Good sleep in heaven – God bless you, our little baby.

We always love you so much.

Your dad and mom,
Vincent Nguyen & Duyen Bui
New Mexico

Tiana’s Story

My name is Tiana Jordan and this is my story: On May 12, 2020 I went to the Emergency Room because for the last week I had noticed that my legs, feet, and thighs would swell every single day and I wanted to know what was happening to me. When I got back to a room my blood pressure was taken, it was well into the 200s/110 which was at stroke level.

After a while I was told to provide a urine sample and of course a blood sample. A few minutes later the RN comes in and tells me that I am 23 weeks pregnant! I was looking like there is no way and are you sure you have the right room, sure enough I was pregnant. The shock came because I deal with Polycystic Ovarian Syndrome (PCOS) and was always told that I may or may not be able to have children and was prescribed progesterone to regulate my cycle and hormones.

So at this point the hospital would not release me and was trying to figure out ways to get my blood pressure down. While I waited I called my boyfriend and told him about the baby, he thought I was joking but I assured him there was a baby and I had literally been pregnant for five months and had no idea. I was eventually transferred to Vanderbilt University Medical Center for monitoring. That same day I was given an ultrasound and found out I was having a boy, myself and my family were elated. The doctors informed me early on that they were trying to determine if I had chronic hypertension before pregnancy or if I was dealing with pre-eclampsia and how that would affect the baby and myself.

Eventually my blood pressure and swelling began to fluctuate and I was given medication to try to balance it, but the hospital wanted to monitor me. Everyday the nurses would monitor the baby’s heartbeat, he would always be in the same spot and maintained a good strong heartbeat. I had been in the hospital a week already and was just ready to be out of there and get back to normal life and begin planning for the baby.

Fast forward to May 21, 2020 the nurse checked the baby’s heartbeat about 2:45pm and I noticed that it had dropped some but I figured he was just moving around. Around 10pm that same day the nurse came to check the baby’s heartbeat and couldn’t find one, she called in another nurse and she couldn’t find one either. On-call doctors were called in and brought in the ultrasound – it was then I was told that the baby had passed away. I was absolutely devastated and began crying uncontrollably. I calmed down enough to call my mom who called my boyfriend and he immediately showed up and stayed with me throughout the delivery of our baby who was born on May 23, 2020.

My boyfriend has been the most amazing and supportive man I have ever met. The nursing staff allowed us much time to spend with our son and even though he wasn’t alive those moments meant everything to me. We named him Kevin Maurice Sanders Jr and I view him as my angel. This is still very fresh and hard to deal with but I know that being allowed to be his mom for that short amount of time was not in vain. Once I am to a point where I can talk about it out loud I want to be a support for those dealing with pregnancy loss….this is my story!

-Tiana Jordan
Clarksville, TN

Angelica’s Story

A letter to our little Angel Baez

Dear Angel,

This has been a very emotional month for me. Since I got pregnant with you, my first little one in March 2020, when I found out that you exist I did not know if I had to cry or smile. I was scared and stressed out with my job and the situation with COVID-19. I was so happy that I want everyone to know about your existence. Some family and friends were happy, for others it was not a big deal.

When I confirmed with a doctor that you were really there, I was double happy, but an ultrasound couldn’t being done because of coronavirus. Later that week I start feeling that things are not going according to the plan because I started bleeding. I called my doctor, she always gave me hope that it was normal and everything will be OKAY. I kept calling her because the bleeding started to increase and my only option was go to the emergency room.

I saw in you in my dreams the day I was losing you. You were saying goodbye to me, you were beautiful but you weren’t smiling. I wake up crying and when I went to the bathroom I felt something came out from my vagina and I ask your Daddy to take me to the hospital. When they did the ultrasound the nurse never spoke and gave me a hot blanket, that confirmed for me that you left early in your life. The doctor sent me home because it was too risky being in the emergency because of the coronavirus, and maybe in two weeks I can come back to see if you were still there or not.

That night I slept alone, and you father was suffering on the sofa while he hears me crying. His heart cried because the pain of losing you was killing us while my body was removing you from me.

I really miss seeing you growing in my belly, but God knows why he allows this to occur and he always has better plans for his children. In all this pain I have been able to learn and be more grateful with life, with God and everything I have. To think that you my angel left and I could not give you the world, but you now have something greater which is heaven, you will be waiting for me there and I will meet you some day.

Meanwhile I must be happy because I know you wanted that from me. Yes of course I have a lot of pain and I had the desire to abandon everything. But if I stop dreaming, if I stop trying, that month and some weeks that I lasted with you in my womb and the happiness that it gave me while I had your great soul inside me is useless if I abandon myself in sadness and loneliness. I had learned so much more in these days of suffering than those days in the past I had stopped living.

I am glad that I found some great human beings who support me in the middle of this crisis. Your Daddy cried with me and supports me all time, some family doctors helped me (those I can mention are Dayissell, Maura and Joan) and some family and great friends.

Some people do not seem to understand how it feels for me to lose you. It’s almost like it never happened for them, and people just expect you to move on with life and try again. But I believe in this: “Don’t give up. I believe in you all. A person is a person, no matter how small” ~ Dr. Seuss

May God bless you my Angel hope to see you in the sky when my time is come.

-Angelica Baez
Whitehall, PA

Maggie’s Story

My story is I was pregnant with twin girls whose names were Delany and Willow. This was my first pregnancy and when I became pregnant I was so happy and then when I found out it was twin girls I was even more in shock. My boyfriend (who is now my ex) was so happy because these were his first.

At 14 weeks was having some pain and went to the ER. They said I was in the process of losing one of twins but the other one was still there. But, when I went to my doctor appointment I found out I miscarried both of the girls. That was in Sept. 2019 that I found out.

This month Feb. 2020 I would have been 7 months and I would be due in April 2020. How do I more on when I think about the girls all time and what could have been. What’s hard is that I didn’t even bleed my doctor said that my body soaked them up. Just wanted to share my story because I feel like no one gets what I am going through.

-Maggie
Westerville, OH