Finding Life’s Joy

A friend posted this recently and it really impacted me.

38 years ago this month I lost twin boys. I was two weeks shy of my due date. They were my fifth pregnancy and the only one to last past five months. It was devastating. I think about who they would be often. Life is wickedly wonderful. Now I’m a Nana and a GiGi. Life has a way of being more beautiful than tragic. Hold on to what gives you joy then spread that joy to whoever you can.”

Yes, this journey called life is full of twists and turns. But it is full of hope. We need to have the courage and strength to believe that things will get better. In the midst of dealing with loss it is often hard to crawl out from despair, but we do because we must. We do because we believe and trust that better days are ahead.

One feeling we should rid ourselves of is guilt. When the clouds start to lift, we often feel guilty that we are beginning to experience some joy and happiness. We can remember our lost ones with love, knowing that they are at peace. We are honoring their memory by living our lives to the fullest.

I just love the phrase “wickedly wonderful.” In spite of, or perhaps because of, the difficulties and hardships we experience in life we often bounce back stronger and with a renewed zest for life. We genuinely appreciate and are thankful for what we have. We want to help others get through their pain by giving them hope and encouragement. My friend realizes this, and I do now as well. I was so devastated when I lost my grandson. All I could see was the pain and anguish in my son’s and daughter-in-law’s faces. But a little over a year ago, she gave birth to a healthy baby boy. To see the joy on all their faces when they come visit just fills my heart with happiness. Yes, our grief may be strong, but eventually it will be joined by joy.

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.

On Grief by Deborah

It can come out of nowhere. You’re doing fine and boom, grief hits you like a ton of bricks. And it can hit you during happy times as well as sad times. I find holidays particularly difficult, as I grieve not only for the loss of loved ones but for past times and what could have been. While I looked with love and joy at my two grandkids Winry and Rory this Easter, I still grieved for my stillborn grandson Liam.

People talk about “waves of grief,” but I think it is more like an ocean, always present. Sometimes the waves are choppy, and we feel grief intensely. Other times the water is calm, but the grief is still there.

We grieve not only death, but intangible things such as loss of family traditions as our elders pass, loss of health, and so on. We need to acknowledge and work through our grief when it hits — not doing so can affect us physically and emotionally.

One grief poem which speaks to me is “For Grief,” written by John O’Donohue. For me, it addresses the choppy seas and calm seas of grief.

For Grief
by John O’Donohue

When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.

Flickers of guilt kindle regret
For all that was left unsaid or undone.

There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief.

It becomes hard to trust yourself.
All you can depend on now is that
Sorrow will remain faithful to itself.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.

Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.

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.

Nyana’s Story

My name is Nyana Rice. I was so excited when I found out I was expecting again. I already have a 3 year old daughter and I was hoping and praying for another baby girl. Unfortunately the day I went to find out if I was having a baby girl or boy I was told some bad news. When the ultrasound started and she told me I was having a girl I was so excited, I just couldn’t wait to tell my family. My world came crashing down when the doctor told me my baby would never make it full term, and if she did she would only live a few hours or a couple days. I had to make the most hardest decision of my life. To this day my heart is shattered. I was 5 months pregnant when I lost my baby girl Madelyn Rose. Not a day goes by that I don’t think of her, or think of all the what ifs.

New Year by Kate

Another January has come and gone. This particular one marked 4 years since my first miscarriage.

I went nine weeks feeling pregnant. I had morning sickness. I gained a pound. My breasts were sore. I had so many typical first trimester symptoms. I went to the doctor for my ultrasound and there was nothing inside me. I had a blighted ovum.

I will never forget lying in the hospital bed awaiting the D&C. The inauguration of President Trump was being televised.

This year as I watched another inauguration in the midst of a global pandemic I couldn’t help but think about where I was 4 years ago. I felt so lost and confused and I think a lot of the country did too.

This year I was with my two babies, my mom, and two of my nieces. I thought about how far I had come physically and emotionally. I thought about how much I have learned. As I watched my babies play with my nieces, I felt a feeling of hope that I recall not having four years ago.

Four years. It’s crazy to me to think that I’ve been pregnant four times in the last four years.

Recently I have had three friends reach out to me to tell me they had miscarriages. Talking them through their feelings took me right back to where I was four years ago. I’m grateful I can be here for them and I am also grateful I can direct them to Through the Heart. I sent them Comfort Kits and each one of them so appreciated it.

I have told them I hate that they have to join this club, but to know that they are not alone and they have the support when they’re ready for it.

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