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You can’t stay in the dark place

Dec 20, 2017 | Stories, Uncategorized

I don’t even know where to begin.

In 1987, when I was 20, I was in a bad car accident. My 3-year-old daughter, who was with me, was shaken up and had two black eyes, but otherwise seemed all right. Someone called my parents and my mom took me to the hospital. I was 38 weeks pregnant.

The hospital staff did a cursory exam and told me everything was fine, in spite of the bruise developing across my large belly. Go home. Rest. You’re fine, they advised. I did as I was told. But the next morning, I knew everything was not okay. I called my doctor, who had me come in immediately. He examined me and said the baby no longer had a heartbeat. I was sent to the hospital for an ultrasound, which confirmed the worst. My full-term son, Jonathon, who was perfectly healthy the day before, was dead.

The decision was made to induce labor. I was in shock, not understanding what was happening. Was I really going to have to endure labor and delivery to bear a child who would never take a breath? I was sobbing and in great pain. I kept telling the nurses that the baby was coming now—I could feel it—but they said it was just pressure and that I needed to relax. I’m sure they thought I was just young and hysterical, which I was, but I knew my body, and I knew the baby’s arrival was imminent.

Within minutes the doctor delivered my son and the nurses took him. They weighed him and cleaned him and did all the things they do with a brand new baby. It would have seemed totally normal if not for the deafening silence in the room. Unable to comprehend what was happening, I couldn’t stop shaking. The nurses piled heated blankets on me, gave me some medicine and told me everything would be fine. They wrapped my son in a blanket and laid him in my arms. He was beautiful, with dark hair and a round face. He was perfect, in fact, except he wasn’t breathing and never would. I would never know what color his eyes were, what his voice would sound like, how tall he would be and so many other things.

I couldn’t understand why a loving God let this happen. Why this baby boy would not get to grow up, and why I had to suffer such excruciating pain. I wouldn’t understand for years.

The nurses said they needed to take my son to the morgue. So I did as I was told and handed him over. They repeated the litany of intended comfort that grieving parents routinely hear: that everything is going to be okay, that things happen for a reason, that my baby was in a better place, and that God never gives us more than we can handle. So I went home and picked out a casket and an outfit to bury my son in. And after the funeral, I changed my clothes and moved on like I was expected to do.

Just a few minutes ago, while typing this, I realized that this is the first time I have told this story in any detail. And it all came back to me as if it happened yesterday. There are people who know I lost a son, and I have discussed some of this with my daughters, but I never walked through it in my mind the way I’ve done just now.

Looking back, I never questioned what I was told to do or how I was “supposed” to feel. I just did what people said I should and I thought it was okay. But now, this very minute, I realize it was not.

I had thought I didn’t deserve to grieve, that I wasn’t permitted to feel great loss. Maybe because my pregnancy was an accident, maybe because I was going to give the baby up for adoption? I had chosen a lovely couple to raise him and we had discussed how he would grow up and what kind of relationship we wanted to maintain. Because of that, I felt I didn’t have the right to grieve my son’s death. But I didn’t want to share the loss with them either. I felt guilty for not being able to give them the child they wanted, and selfish for wanting to keep the pain all to myself.

I have lived with these feelings for 28 years.

Thirteen months after my son’s death, I gave birth to my second daughter. I needed her, longed for her. She soothed my soul. Later on, I had twins—in all, four daughters who brought love and joy into the world. They were my breath and the beat of my heart. I raised them by myself for the most part and watched them grow into beautiful young women with children of their own.

One day, when my second daughter was about five months pregnant with her first child, I got a phone call. Something was wrong with the baby. The doctors weren’t sure what, and my daughter was understandably scared. She lived in another state, so I cut short a business trip and flew there that day. There was a series of tests and an excruciating wait for answers, none of which were encouraging. My daughter and her husband decided to continue the pregnancy, knowing their son would have complications, but not sure to what extent.

Two months later I got a call saying the baby was coming. It was too soon! I hoped for the best but anticipated the worst as I again flew to her bedside. As she struggled to breath, I prayed that she and the baby could hold out a bit longer to give him a better chance at life.

But it was time. They rushed her to the operating room and I called my oldest daughter. We waited together on the phone in silence, praying that we’d hear a baby cry or that a nurse would come out and calm our fears. “Wait! Wait!” I cried out at one point. “I heard a cry. Maybe everything will be okay.” When a nurse did emerge, I asked if that was our baby and was he all right. “No ma’am,” she replied. “He has been delivered but he didn’t cry. He is on a ventilator. He was having trouble breathing and the parents requested all measures be taken to save his life.”

So while my daughter was brought to recovery, my grandson was taken to the NICU, without much hope of survival. I went to be with her. She smiled bravely and talked about how beautiful he was, and we cried a little. Eventually she was moved to a room on “the quiet side” of the maternity ward. The side where you didn’t hear babies cry 24/7 and the hall wasn’t filled with flowers, balloons and beaming parents. The side where no one ever wanted to be because doctors spoke in terms of feeding tubes, ventilators and hours, not coos, swaddling blankets and years. The side where nurses’ faces conveyed compassion, not joy.

Over the next 48 hours, we learned that the baby had a rare genetic disorder and would never breathe on his own. I realized then that because God had taken my son all those years ago, I could help my daughter now, making sure that she was allowed to feel and do whatever she needed to feel and do. So she would never have to feel the way I did.

When I lost my son, my family and friends didn’t talk about it. It was just something that happened, and you got over it and moved on. I never felt this was the right thing to do, but I was so young and traumatized that I never questioned it. It was simply what you did.

My daughter’s experience was very different, right from the start. Her doctors talked to her and her husband about their baby and what was going to happen, and they were asked how they wanted to proceed. My daughter was allowed to set her own timeline. She was able to hold her son and sing to him for as long as she wanted. No one insisted on taking him away. She got to dress him, whisper in his ear and rub his fingers and toes. We all rocked him and told him how much he was loved. Thanks to an incredible group called Now I Lay Me Down to Sleep, she now has the most beautiful pictures of him. And he hospital staff made her a memory box containing his bracelet and blanket.

After his death two days later, I helped with funeral arrangements. Once again, I was picking out a tiny casket. But I spoke with my daughter on the phone and described them to her could decide. I also bought several outfits so she could choose what her baby would be buried in.

Most importantly, I told her it was okay to be sad, even angry, and that she didn’t have to “get over it”—that she could talk about it as much and for as long as she wanted. I also shared with her that her arms would ache to hold her baby, and that the empty feeling was never going to go away. It would get easier to live with, but it would never disappear. And I said that even though she felt she couldn’t go on living, she could … and would.

I didn’t want my daughter to suffer as I had. And in trying to ease her pain, I gained insight into my own. I had always anguished over why my son was taken. There had to be a reason for such unimaginable tragedy. It was only with my grandson’s death that I could accept that there was no reason, no explaining the inexplicable. But in losing my own son, God had made me better able to love and support my daughter through the loss of hers. It wasn’t an explanation, but it was a great comfort.

One might think my story would stop here, but it doesn’t. Seventeen months ago, my 2½-year-old grandson died. His mom, the same daughter who lost her newborn, had put her toddler down for a nap, but he got up and somehow managed to pull a dresser over on himself, crushing his chest.

When I got to their house, five minutes away, paramedics were rushing in. My daughter was standing in the yard covered in her son’s blood, horror reflected in her eyes. This is where I have to stop because that loss is still too fresh and painful for me to go into detail about it.

But here is the takeaway for other families who have lost a child: You can’t stay in the dark place. It chews you up, swallows you, spits you out and then chews you up again. You have to know that there’s light on the other side, and that you can get there.

Yes, you’re overwhelmed, so deep in your grief that you can’t see outside of it. But it’s okay to talk about it. Don’t try to pretend that this never happened. People need to know that they can have a fulfilling life after experiencing the loss of a child. You don’t forget it. It never goes away. But you do survive.

Thank you for this opportunity to express myself. I hope my voice in some way can help others find theirs during a most difficult time.

Jen

Prairieville, LA

 

For Some Bereaved Parents, Grief is Compounded by Identity Theft

Dec 12, 2017 | Stories, Uncategorized

Matt and Roya Pilcher were among the millions of Americans who slogged dutifully through the process of filing their taxes in 2011. But that year they joined countless other bereaved parents in experiencing pain far beyond the inconvenience of paperwork. Not only had they lost their daughter Ava; the IRS subsequently informed them their claim had been denied because someone else had already claimed Ava – and the accompanying dependent tax credit – as their own. Now the Pilchers were burdened with proving to the IRS that their dead daughter was, in fact, their dead child.

“All we really have is her memory and her name. For someone to try to steal that, to appropriate that for themselves – it’s beyond reprehensible,” says Matt Pilcher.

How frequently bereaved parents face this form of secondary victimization is unknown, but identity theft presents a risk for all families who have experienced the death of a child. At greatest risk are those who have lost a dependent child, ages 0 to 18, because of the financial gain associated with the tax credit. The Centers for Disease Control and Prevention estimates as many as 40,000 children, between the ages of 0 to 18, die each year. In April of this year, parents who had lost their two-month old son, Nathan, more than 44 years ago discovered that his identity was stolen by a man who used it to escape from a halfway house in the mid-1990’s. And these are just two examples of this unthinkable crime.

While the scope of thefts have diminished in recent years, in May, IRS Treasury Inspector General Russell George testified before the House Ways and Means Committee that in cases of identity theft, innocent taxpayers often do not learn they are victims until their own filings are rejected, as was the case for the Pilchers. George attributed “significant financial and emotional hardships” to victims of this experience.

The Pilchers’ suffering did not end with the theft of their daughter’s identity nor the indignity of proving her loss. “One aspect of this ordeal that I found to be particularly maddening is that the IRS protects those individuals who steal the SSNs of deceased children, shielding them from both civil liability and criminal prosecution…When I wrote the IRS in 2011, providing proof that Ava was our daughter, and asking for copies of any returns that claimed Ava’s SSN… the IRS refused, stating that doing so would violate the privacy of those individual(s) who stole her SSN and filed the fraudulent return,” shared Mr. Pilcher.

Taking simple measures to protect families, and those they recently lost, from identity theft would appear to be a basic proactive step to protect not only the affected families, but also millions of hardworking taxpaying Americans. We have a responsibility, as a nation, to ensure the institutions established to serve our citizens and our national interests do not enable predators to victimize families who have experienced one of life’s most painful tragedies.

What’s Your HR Benefit? Deana’s Was One Week Leave Per Child

Dec 3, 2017 | Stories, Uncategorized

Most Employers Grant Only Three Days Of Paid Leave After A Child Dies

There are times in which an entire life can change in a moment. It may come in the form of an anxiously anticipated milestone: graduation, marriage, or the birth of a child. But there are darker, unimaginable tragedies we often refuse to consider – tucking them into the deepest recesses of our minds because they are too painful, too life-altering. For Deana Martin that moment came on a busy Friday afternoon.

Going through routine updates during her weekly supervising meeting, Deana’s phone began to ring. It rang again, and again, and again, incessantly. Continuing to devote her attention to work, Deana reviewed department finances, all the while noticing an unknown number with her hometown Indiana area code. Given the relentless nature of the caller, Deana acquiesced and picked up the phone.

The news was devastating: she had lost not one, but both of her children. But the death of her children was just the tip of the iceberg. As for many parents, a glacier of change was underway.

In the days following her unimaginable loss, she fought through indescribable pain – all the while planning funerals; making accommodations to become the primary caregiver for her young granddaughter; informing the employers, family members, and friends of her deceased children; and attempting to comfort those around her. It was during this time she learned her employer had given her two weeks of bereavement leave – one for each child.

Today, child death is not a qualifying event for job protection through federal legislation known as the Family Medical Leave Act (FMLA). As a result, bereaved families have no choice but to negotiate leave with their individual employer – at a time when they are least emotionally and mentally capable of doing so. Oregon and Illinois are the only states in the nation to require employers to allow bereaved families to take two weeks of unpaid leave; Illinois provides additional leave – up to six weeks – for the loss of multiple children. According to one industry survey, 69 percent of employers grant three days of paid bereavement leave following a child death – not enough time to plan a funeral. As a nation, we can do better for our families, especially in a time of significant crisis.

Those two weeks passed in a haze for Deana: burial arrangements, negotiations with insurance companies, building a new life for the granddaughter who had been robbed of her mother and uprooted from the only surroundings she had ever known. With compassion and care, Deana persevered.

Deana returned to work, yet she did so in body only. Her mind, heart, and health would not recover. It took years for her to realize that her life was forever changed. Her grief was severe and enduring: chronic depression, anxiety disorder, insomnia, panic attacks, and a condition known as complicated or prolonged grief syndrome – all symptoms many families endure for decades, if not a lifetime. Ultimately, Deana was released from her job by an employer who was unable to support or assist in her recovery.

Deana still struggles to define herself and her purpose in the aftermath of her loss: “My children were and are my life. My identity as a mother and a career woman disappeared. I struggle with the question, Who am I now?“

As she rebuilds her life, she focuses on caring for her granddaughter and working to help other families who have suffered the death of a child. “I know I am where I am meant to be in life and that my experiences are more normal than not,” says Deana. “I know it will still take time to rebuild and sift through the rubble of my shattered life of twenty-five years. In time I will build a new foundation and new coping skills. There is one thing I know without a doubt, and that is that I have to give of myself to society, for I have a heart and compassion for other hurting parents like me.”

 

No one understands…

Dec 3, 2017 | Stories, Uncategorized

It’s okay no one understands why I was so upset this morning. Dad and Johnny don’t get it – perhaps the male mind can compartmentalize easily – they accept that you’re gone. Today I took stuff out of your room, the way I had set your things up, because dad is going to paint the room. You would approve of the colors – chocolate brown and a blue that is more turquoise than any other blue by name.

Dad wanted to take off everything on your bed and move it. I got hysterical crying. Kiki nothing has changed on your bed, linens, covers, pillows and stuffed animals, since March 1 2012 – the last night you slept there. I wanted to keep you there. I know its ridiculous. I can still smell you if I put my head on your pillow and pull the comforter over me. I laid on top of your bed once – the day you had died twelve months before. You know I know you are not coming back, yet there was something symbolic about the bed staying the same. It was not to be used; I would not let others sit on it. Daddy could not sleep on it. I did not want anyone to take away any part of you that was there.

I know it is a little crazy, when up late at night and I walk to the basement, there is a strange instant of fear that a ghost or you would come. I freak that I had this thought because I think now you will not come. In my mind, quickly, I say, “I would never be afraid if Kirsten came to see me. I could keep it a secret, we could meet in the basement”.

I cannot shake the sense that someday I will see you in the only form I know, human; this is what television has done to me starting with the movie “The Ghost and Mr. Muir”. I believe your soul is alive – I don’t know what that means. I wish my mind had a higher frequency, deeper intelligence and open mindedness. I think if I was at this higher level of thought I would have a sense of you being with me, or a clear vision of you or warmness in my heart when you hug me.

I just thought of this the other day — I spent as many years with you as without you. When I was 26, I was pregnant with you and had just turned 27 before you were born. Obviously, most of the years up to age 26 I was a child. I grew up with you. Sometimes you took care of me. I have always felt possessive of you; as if you were mostly mine. I know daddy and Johnny are part of my life, deeply loving them too. However, you were I, and, somehow, I was you. It does not make sense logically — it’s a feeling, of sorts, in my mind and heart. Part of me just cannot let go of you. My keeping your bed, “as it was”, left a tiny opening that someday you would come back.

Well, after dad and I had words about things, I carefully took off the pillows and put them in plastic bag and closed it tightly. I did the same with the blanket/bed-spread and a separate bag for the bottom sheet. I was crying. As I folded the sheet, I thought it was like folding the American flag for a soldier that had died. The room has never been so empty. No Kirsten mementos or bed coverings. If your room had feelings, it would be heartbroken today. This was your special room for twenty years although, in reality, it was only special because you were in it.

I often think about things we might have done when you and Johnny were young. When I went to Old Orchard the other day I could not remember if I had ever let you stop and look at the goldfish in the pond when you were little. Did I? I wish we had taken a walk at the lake. I hate to think about how stressed I was when you were young – always rushing.

I love you, more than anyone can ever understand, as I cannot understand. I feel as if I don’t understand anything – day turns to night and then it starts again. I hate the days passing…. I don’t want to have more years without you then with you. I pray — I do not know what else to do. What am I supposed to do in life now? Some days, like today, I can’t stand you being gone, unable to touch you, or hear your voice, or get a hug. I miss you.

Mommy
July 1, 2013

Is Your Child Safe? Betsy Wants To Know

Dec 3, 2017 | Stories, Uncategorized

Serving her country was the first thing Betsy Cummings would do following graduation. Leaving her small hometown of Culpeper, Virginia, she was off to see the world, meet her future husband, and eventually welcome her young son, Dylan, into the world.

Following maternity leave, Betsy did what millions of American working families do each day: she relinquished her only child, seven-week old Dylan, to a local childcare center in Norfolk, Virginia, entrusting them with his life. But what happened next was a tragedy no parent should experience.

Within weeks of returning to work, Betsy received a call from the childcare center. They urged her to come quickly; there had been an “incident” and her son was no longer breathing.

What Betsy did not know then, and what American families do not know now, is that federal child safety protection laws are not equally enforced by all states. Certain childcare providers are exempt from commonsense requirements such as background checks, fingerprint analysis, and formal childcare training. In Betsy’s home state of Virginia, for example, 14 types of organizations are exempt from federal child safety protections including religious institutions, karate training centers, local parks and recreation facilities. In these states, families are left with no criminal recourse when their child is injured or dies while under the supervision of an exempt childcare provider.

Racing from her office, Betsy recalls stopping at a red light en route to the childcare center and watching a man cross the street with his child. “I remember thinking, ‘God, I hope I still have that.” She did not. Her son had been found unresponsive after being placed on his stomach to sleep in an unventilated 12-by-12-foot room that fire marshals labeled a utility closet while the caretaker took a lunch break in a more than 55-feet (or five stories away) from the children, according to the Licensing Division of the Virginia Department of Social Services.

In the aftermath of Dylan’s death, Betsy began asking questions. She learned the single caretaker who had been responsible for her son and nine other infants had never received training in how to care for infants and did not know standard safety precautions to prevent sudden infant death syndrome (SIDS). In fact, the childcare center had never been subjected to the routine inspections required for daycare centers licensed by the state of Virginia.
Moved by Betsy’s story, the local district attorney charged the childcare center with felony homicide neglect. Because of the exemption, however, the judge found: “Because of its affiliation with a church, the day care center is not subject to the regulations applicable to secular day cares.” He goes onto to say, “While the court is certainly sympathetic with the concerns expressed by the Commonwealth, the remedy for this situation lies in the sound discretion of the General Assembly, not with the judiciary.” In short, there would be no criminal charges or incarceration for the death of her son; it was a legal loophole that persists today.

After Dylan’s death Betsy left the Navy to pursue her bachelor’s degree in paralegal studies and an associate’s degree in criminal justice. Now a paralegal, Betsy is determined to help change Virginia laws governing childcare licensing and regulation to prevent what happened to her son from happening to other children. “I just want to see that it’s safe, that it’s fair, no matter where you go,” she says. “I have to try to save another child. I have to try to keep others from feeling this pain I feel every day. That has to be why Dylan was put here.”

Even the Forgotten Lose Children

Dec 3, 2017 | Stories, Uncategorized

Even the Forgotten Lose Children

Countless experiences shape the trajectory of a human life, but for Maryam Henderson-Uloho the convergence of two specific and devastating events ultimately changed her course: a 25-year prison sentence and the death of her son, Augustine.

Maryam was serving her sentence at St. Gabriel’s Louisiana Correctional Institution for Women when she received the news that her oldest son had died in a motorcycle accident. There were no social or mental support systems available Maryam. In addition to the absence of professional assistance, she could not even take refuge in the support of her prison community. A gesture as simple as a hug from another inmate could result in a minimum 90-day stay in solitary confinement, known as “The Hole.”

Recently, there has been mounting attention surrounding policies and practices for incarcerated women – and for good reason. Since 1980, there has been a 716 percent increase in female incarceration. In Louisiana, black women are incarcerated four times more than white women. The Sentencing Project, a leading voice in reforming the nation’s criminal justice system, attributes these increases to “more expansive law enforcement efforts, stiffer drug sentencing laws, and post-conviction barrier to reentry that uniquely affect women.” According to the Bureau of Justice Statistics, more than half of America’s prison population has a child who is under the age of 18.

“I am continuing to live with it: the death of my son and re-entry into society,” Maryam shares. Knowing firsthand the unequal support former female inmates receive, Maryam has channeled her energy and love into supporting formerly incarcerated women through her upstart venture, SisterHearts Thrift Store. “SisterHearts” is an affectionate term identifying women who were formerly incarcerated, those who are still in prison, and others who have supported Maryam since her release.

SisterHearts Thrift Store is no small affair. The 15,000 square-foot facility is located in St. Bernard Parish, one of the areas hardest hit by Hurricane Katrina, and an integral part of the community. Beyond offering goods ranging from common household items to clothes to furniture, SisterHearts hosts cooking classes, writing classes, and even a Toastmaster club. She also has made transitional housing a focus of her efforts. Maryam knows from her experience in the criminal justice system that inmates are required to provide a residential address as a condition for release. For a variety of reasons, many women lose their homes while serving their sentences. To address this challenge, Maryam offers a free six-bed facility for those women who have no home to return to or safe place to stay upon reentering society.

While she has a clear focus on serving formerly incarcerated women, Maryam also works with former male inmates, who provide support for the store. Michael Coleman has been with SisterHearts since the beginning and has developed skills in customer service, merchandise repair, and management.

While Maryam provides support, both practical and emotional, for those that much society has left behind, she faces common struggles as a small business owner and bereaved parent. “I live with Augustine’s absence daily. Just like a mother’s love, this pain can never be erased. I honor his memory by loving others and working hard every day to strengthen my heart.