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Posts from the ‘Stories That Will Touch Your Heart’ Category

The FealGood Foundation

by John Feal
Founder and President
FealGood Foundation
Director of the Zadroga Bill (HR 847)

John Feal

John Feal

In slightly more than an hour eleven years ago, nearly three thousand lives were tragically cut far too short. More than three thousand families were instantly re-directed; mourning the loss of their loved ones while wondering how they would navigate their futures without them.

The reaches of September 11th went well past the East and Hudson Rivers. The same terribly historic hour also propelled our nation’s armed forces into battle in two separate countries, causing the loss of hundreds more of this country’s youth and future leaders. Today’s eighteen-year-old servicemen were merely seven-years-old when the fate of their service was determined.

During that same summer hour, thousands of firefighters, police officers, emergency medical technicians, correction officers and emergency personnel converged onto the World Trade Center site in order to save their fellow Americans, hoping their skills and training could save the life of even one person. Soon after, the Twin Towers collapsed. First Responders realized that they would not save their peers, but that their skills would be needed in an entirely different mission, recovery. They would be joined in this mission during the hours, days, weeks and months following the attacks by tens-of-thousands of their brothers and sisters in the construction trades, communication industry and volunteers. The goal of recovery was not limited to the recovery of the personal effects of those lost, but the recovery of this country from one of its darkest moments. Over the next year, the combined efforts of First Responders enabled families to find closure in the burials of their loved ones. They removed the debris from the World Trade Center Site and provided these services with an unmatched dignity, professionalism and heroism. Read more

I Am

by Brenda McBride

Written for my beloved dad

I am in the cool breeze that forever blows so softly in the wind that passes by you,
feeling at peace, where pain is no more,

I am in a timeless paradise full of love that’s so true.

I am in the melody of your favorite songs, gently swaying to the tune to the music
with harmony in my soul.

Feeling free with ease to soar far away into paradise, engulfed in bliss and joy,
dancing like never before, completely whole.

john morgan

I am the warmth that radiates from the heat of the sun, sending you comfort and compassion to dry your tears as they fall, to add a smile to your day.

Feeling happy not sad, helping you get through your grief,
trying to let you know I’m fine, more alive than words can say.

I am in the rainfall, as it falls briskly beneath the sky,
refreshing the land with a cool, crisp start, feeling so fresh as the rain falls down.

Don’t cry for me, I’m happy now, we’ll meet again, so carry on without a frown.

I am very much alive, please watch for the signs I send to you as you continue your
life here on earth, I’ll be close by.

Think of me each day, and please don’t cry.

Read more by Brenda here.

Choices

by Jim Tucker

1028“Each time we encounter a painful experience, we get to know ourselves a little better . . . Pain prompts us to face who we are and where we are. What we do with that experience defines who we become.” John Maxwell

 “The Lord is good, a stronghold in the day of trouble; and He knows those who trust in Him.” (Nah. 1:7 New King James Version)

 A Clear Crisp Morning in Tucson

 The plan for January 8, 2011, seemed simple enough: I would get a haircut before we attended the Congress on Your Corner meet-and-greet sponsored by Representative Gabrielle Giffords in front of the Safeway grocery store, and then go to the Home Improvement Show at the Tucson Convention Center. We arrived early, met several of the congresswoman’s staff, and signed the registration list. My wife, Doris, was number two and I was number three, so we would speak with the congresswoman and then be on our way.

We had just started talking with Giffords when there were some loud bangs and a whirlwind of air. The first two shots were a blink of an eye apart, then a flurry of shots began and I found myself lying flat on my back, looking up at the roof under which we had been standing.

After hearing about our involvement at the incident, a friend of over 50 years commented by e-mail: “It is truly amazing and a miracle that at three feet away you weren’t killed. You obviously had a guardian angel standing between the shooter and you and Doris. Although from the way things turned out, it looks like he was standing a little closer to Doris.” Read more

A Call to Service

by Tami Frye

Tami and girlsThose of us in grief counseling find ourselves spending considerable parts of our days with people who are grieving significant losses in their lives in one way or another. Many, if not most, of our clients entered treatment, in large part, due to the fact that they felt so isolated in their grief.

For centuries, ours has been a culture that has not condoned discussion of death, loss or grief. Not so many years ago the dead were brought into the home of the family for a period of time immediately prior to the funeral. In another era, widows were not accepted and were expected to wear only black for the year following the death of their spouses. Not so terribly long ago, the public acknowledgement got even smaller in the form of a black ribbon adorning one’s clothing.

Today, most of the general population is more comfortable if we do not discuss grief or loss at all. This occurs simultaneous with a time in history where people are losing jobs they have held for twenty, thirty, forty years or more, homes are being foreclosed on, the divorce rate remains elevated, the marriage rate declines, and newscasts are full of incidents of mass casualties in our country. Read more

Underage Driver

by Barbara McFadden, M.Ed., LPC

Barbara McFaddenWaiting, impatiently, for the day when she can get her driver’s license is positively unbearable for the high school sophomore. She seizes the moment, when her parents are out-of-town, to take a little test drive. She will be careful, very careful.

She follows all her parents’ rules: seat belt buckled, radio off (to avoid distraction), no passengers, no eating, look right-left-right before crossing intersections, and watch the speed limits. All the rules but one–“drive only with us until you get your license”.

The young boy on the bright blue bicycle swerves in front of her! She slams on the brake and jerks the steering wheel sharply to the right. “No, oh no.” The car starts to slide towards the curb. She jerks the wheel back to the left. “What’s the matter with this car?” She can’t believe it’s so hard to control. It whips back towards the curb.

The end of the test drive is announced by the sound of tires squealing, brakes screaming, metal crunching, glass shattering, and young wood bending (in its resilience, not breaking) as the mid-sized red, four-door car left the roadway, jumped the curb, and landed broadside coming to rest against the tree.

“911–What is the nature of your emergency?”

About the Author: Being a Licensed Professional Counselor is a later-in-life professional goal. I returned to school in 2003 and received an Associate of Arts degree in Communications in 2005; Bachelor of Arts in English with a minor in Psychology in 2007; and my Master in Education in Counseling in May, 2010 from Sul Ross State University-Rio Grande College. I have recently completed a 3,000 hour internship and am awaiting receipt of my new Licensed Professional Counselor license from the State of Texas. I currently serve as President-elect for Texas Hill Country Counselor’s Association, a chapter of the Texas Counseling Association. I provide counseling services at New Hope Counseling Center, BCFS Health and Human Services, and Peterson Hospice/Bridging the Gap bereavement group for children and adults. I believe everyone has within them the knowledge and ability to make changes that will result in living a more fulfilling and satisfying life and that my role as a counselor is to help facilitate those changes.

My husband Jerry and I moved to Kerrville in July 2010. We are the parents of 9 adult children, grandparents to 24 children and young adults and great-grandparents to 15 babies and children.

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The Ultimate Choice: Donate

by Debbie Henry

Mark, Debbie, Scott, and Teresa

Mark, Debbie, Scott, and Teresa

None of us want to think about the issue of organ donation, the subject brings fear to our hearts. We just do not want to address the issue, procrastination is normal, but the truth is it needs to be discussed.

I wanted to share our son’s story. Deciding to give life to others while in denial that you are losing your loved one is a place I wish no family had to visit. The fact is that all too often it does happen, and to be prepared and know what your loved one would want at this stressful time is a blessing.

Our son, Scott, a bright and gifted college student, was taken from us on September 16, 2004. He was 23 years old. He was doing the right thing by offering to be the designated driver for a group of friends the night of September 10, 2004. In the early morning hours of the 11th, Scott was fulfilling his obligation; he was sober, only trying to get a friend to his car in order to take him home. When we received the call to come to the hospital and the ER Doctor said that Scott was badly hurt, it seemed unreal and totally impossible.

We have always trusted both of our sons to use sound judgment and they have never let us down. We did not ever receive calls from their schools or the police; our boy’s had always offered to help others instead of acting with aggression.

Five days we prayed and could only watch as he slipped from us. He soon became a mass of stark white head bandages, tubes, pumps and beeping monitors. The only help that we could give was to wipe morphine sweat from his brow and pray he knew his family and friends were with him. We were choking on hope and memories, unwilling to accept the fact that we might lose him. Your mind goes to a place of safety or at least tries to during a time of high emotional stress. You do not want to hear that it’s over.

On the fifth day, the doctors called the immediate family into the ICU. I can remember sitting beside my mother, Scott’s father and brother were standing directly behind me, along with Scott’s aunt and uncle. The doctor showed us the brain scans, they revealed massive swelling. Next they showed scans of his heart, which had been badly damaged because he had several strokes due to blood pressure in his brain backing up to his heart. His heart kept trying to pump blood that could not flow into the brain. The doctor explained that in most cases being physically fit would be a good thing, but, in this case, Scott’s body was struggling to repair itself.

The next question asked was how did we feel about Scott being a donor? Those words took my breath away. Everything stopped.

Until this point, I still wanted to believe that everything would be OK, that somehow Scott would live. This question forced us to see that it was over. Our son was gone. All that I can really remember was our younger son, Mark, speaking through tears into my ear., “Mom, you know that is what Scott would want”. His voice brought me back to this new horrible reality. Yes of course, what do we do, where do we sign. Shock is not even close to what we all were feeling.

We were then given a crash course about donation, skin, bones, eyes and organs could save lives and help accident victims, this information made a deep impression on us. The thought of burn victims had not even entered our minds. We signed and knew Scott would approve. He had always taken care of himself and we wanted his hard work to not end here at this hospital.

As we left the ICU and entered the hallway, we were greeted by a dozen or so of Scott’s friends. The hospital was filled with these wonderful young people. I can’t guess how many of them had camped out in the waiting rooms for five days. Taking shifts so that Scott would never be alone, they had helped us get through this horrible time.

We would never have imagined that our decision to donate would not be received as an option. Some felt that we were giving up on Scott and we were not giving him a chance to recover. Others understood. The kids had not seen the scans we had just witnessed. They did not understand that no matter what we did Scott was not going to make it. With both his heart damaged and his brain swelling it was just a matter of time, Scott was clinically brain dead. He was already gone. They spoke of miracles and how strong Scott was if given the chance.

I crumpled under their gaze. My husband, Mark, stepped forward and gripped my arm as he held me. He then spoke for both of us. The decision has been made. We are his parents and we hold this responsibility. It was Scott’s wish to be a donor and it is ours also. Mark then asked them to please understand we were looking out for our son. He moved the crowd aside to let us pass. A minister stepped forward and offered to help talk to the kids, as did our son. Scott’s girlfriend, Teresa, looked in his wallet and found that Scott had signed the donor agreement on the back of his driver’s license. They walked slowly away and asked to see Scott one last time. We agreed as did the ICU staff. The next few hours were a blur, as were the next days, weeks, and months.

I share this horrible time in our lives with you to try to help you understand the chaos surrounding a tragic event of this magnitude. Scott had signed his donor card, without it I don’t think Scott’s friends would have ever forgiven us. Over time, they have finally understood why we agreed that Scott should be an organ donor.

Life Share of Oklahoma was Scott’s organ placement service. They were in immediate contact with us. Helping us through our pain, they were fearless in their dedication to lessen our grief. Phone calls at random times as well as Mother’s and Father’s Day, Christmas and Scott’s birthday. When the pain was at its worst, they were there.

They sent us a letter explaining where Scott’s organs had been placed, their ages, health issues and state locations. They asked if we wanted to be informed if any of the recipients contacted Life Share asking to communicate with us. We agreed and could not imagine what would happen. What happened was amazing; there are no other words to express it. Now there have been bittersweet tears of joy instead of only pain. We had made the right decision.

The first letter we received was a year after Scott had passed. It was from a wonderful young lady who was thanking us for her father. She was disabled and would not have been able to live at home without her father; he also sent us a thank you letter. He had received Scott’s liver on September 18th. Her father only had a short time to live without one. He was placed on the transplant list on September 16th, the day Scott died. She used an onscreen keyboard in order to send us her letter. She told us about her dad’s farm and that her brother was in college but would be returning to the farm soon to help out. They had cows and other livestock, it sounded like a beautiful place to live. Without Scott’s gift, this young lady would have been placed in a home for the disabled. Taken from everything she knew. She would have lost her Dad and he was everything to her. Although he is in his fifties, he now has a long life ahead of him as does his family. How many lives had Scott touched and changed for the better.

We received a card from Scott’s kidney recipient with a big Thank You. That means to us that they are OK.

Then three years after Scott had passed, we got another letter, this time from our home state of Texas. The letter opens with, “You don’t know me, but I am alive, thanks to your loved one who was my pancreas donor. This makes you all a part of my family”. She continued to share that when she was diagnosed with diabetes at age thirteen she immediately became insulin dependent. At age sixteen, she lost her mother, so she became surrogate mother to her siblings. This included cleaning the house, laundry, cooking, helping everyone do their homework, plus keeping up her personal studies, and lastly, preparing the family for bed and it started all over the next day.

As the years passed her diabetes became worse. She had to have a leg amputated and was in the hospital for three months. Then dialysis three times a week due to renal failure. By the Grace of God one of her brothers was a match and he donated a kidney, but without a pancreas it too would fail. She was on the donor list for a year and five months. Then on September 18th, two days after Scott died, she received his pancreas, it was a perfect match.

It has been three years and she is still healthy. She has not experienced any type of rejection. She thanks God, her hospital and doctors, and Scott for offering her life. She, for the first time, has her own apartment, lives alone although her father checks on her every day. She loves to read, write, watch TV and enjoy Texas Sunsets. She no longer has diabetes. She wanted us to know that our son still lives through her, with her heartfelt love and gratitude for Scott’s gift. We received her letter at Thanksgiving 2007.

Then in December another recipient from Oklahoma had a gift for us. This man was not one of Scott’s recipients but someone who was saved by a wonderful donation of a heart. We received a breathtaking hand drawn picture of Scott in his pilot’s uniform. My heart stopped. I could not believe it. One thing as a parent of a lost child that we miss is new pictures, showing them as they are now. No new pictures for us… Yet this man found a way to give us a gift not only from him but from Scott. Thanking us for allowing our son to give life to others.

I feel Scott is still here on earth, still alive inside these people. Not gone, just here differently.

Please have the donor discussion with your family. Think about what you want to do now. NOT during a time of crises. What if it was your child, your wife, your husband, or your parents? What would you do in this situation?

We are not asking you to decide to be a donor, we are simply asking you to really think about it and then have that talk. This is not a comfortable subject, but it is a discussion that could save lives.

We watch TV reports and read every day about the deaths on our streets; these things make us feel helpless as though we alone cannot make a difference. It seems overwhelming and the problems are larger than we can fix or change. So we do nothing. Organ donation is one issue you may be faced with in the future. I pray that you never have to make this decision but if it happens, will you be prepared? Please consider the discussion.

Thank You
Debbie and Mark Henry
Contact Debbie: 1dhenry@verizon.net
Scott Bolton’s Parents: A Tulsa Oklahoma Murder Victim

About the Author: Both Debbie and her husband, Mark, were born and raised in Southern Indiana. They moved to Texas in 1985 to offer their sons, Scott and Mark, a better education and career opportunity. They currently live in Argyle, Texas.

Debbie has worked at Premiere Laser Centre since 2001. She and Mark are active in their local church, Cross Timbers, Argyle campus. After the loss of both Debbie’s parents and her oldest son, Scott, she had to make a decision. Should she stay angry and let it rule her life or be part of the solution.

Debbie and Mark work consistently toward changing state laws. Debbie is a member of Denton County CERT (Community Emergency Response Team) including ongoing monthly classes as well as attending storm spotter training classes. Both she and her husband are grief group facilitators at Cross Timbers Church’s Journey Toward Joy bereavement program. At this time, Debbie is considering several new areas of service.

Debbie’s other writings:
Scott’s Story and His Family’s Loss (child murder)
Why Am I Angry?
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Grief Without Belief

by Deidre Felton

Whether or not we share a specific belief system there is a sense of solidarity when it comes to dying. Dr. Albert Schweitzer said that he found there was “a fellowship of those who bear the mark of pain,” and that “sensitivity to human suffering does not stand alone and rootless.” We have all stood over different graves and have had different beliefs as to the fate of our loved ones, but our tears remain a universal constant and need no translation.

There was a recent article by Kimberly Winston from the Religion News Service entitled, Grief without God, wherein she discusses the challenges for an atheist who grieves without a specific belief system. She writes of parents who chose to leave support groups because they didn’t share the views of other participants who spoke hopefully of “holding their children again” in an afterlife.

One anguished mother commented in the piece that her loss was so absolute that to suggest otherwise was to dismiss its magnitude. So how do non-theists cope without the “trappings” or support of religious ritual and belief? Where is there a space for them in what is essentially a theistic culture? One place to look is at the Facebook page entitled, “Grief Beyond Belief,” where one of the tenets of the Bill of Rights for the Grieving is, “You have the right not to be grateful, reasonable, inspired or inspiring.” Another would be the book “Godless Grief” by Cathe Jones whose work has generated an online community of like-minded grievers.

Creating rituals for non-theists would also seem to be of importance. Rituals have been with us over many millennia. Flower pollen has been traced back over forty-thousand years in caves in Scandinavia, placed on the bodies buried deep within their caverns by mourning loved ones. Rituals not only link us to our past but provide a way to cope with everyday life. They acknowledge the trauma, but also the survival of the living. The community has been damaged as well as the individual. It matters that we were here. It matters that we are no more, and it surely matters that someone cares enough to notice. Rituals affirm who we are and where we fit in to the universe. No one wants to slip into oblivion. Being erased from memory may, in the end, constitute one of our deepest fears.

So what might be some options? When the deceased has specified no service and no obituary, there are still ways to fill in the gaps.

  • You can write a letter to the deceased and leave it with the body for cremation or burial.
  • You can put a notice in the paper on Mother’s Day, Father’s Day, a birthday or other anniversary.
  • You can donate your body to science, thus bringing hope that what is learned may yet help the living.
  • There can be a public gathering in a secular setting at a later date.

When a colleague of mine died who had done pioneering work in the AIDS community and later succumbed to the disease himself, a gathering was held in his memory. Three months later in a concert hall, several people spoke, and a chamber orchestra played a number of his favorite Mozart works. I like to think that he would have been pleased.

Bearing witness is also a way to bring comfort to the living. A recent article in the New York Times by Hiroko Tabuchi recalled the first anniversary of the tsunami in Japan. He spoke of a retired undertaker, a Mr. Atsushi Chita, who had spent countless hours cleaning the faces of identified victims as best he could so that the grieving family members would know that cultural rituals had been observed and that their loved ones had not been alone in death. My sister-in-law, who is Japanese, impressed upon me at the time how vital it was that even in catastrophic circumstances the body be treated with respect and dignity.

I am thinking of all who bore witness at the makeshift morgue in lower Manhattan after 9/11. Some were clergy, many were not, yet there was a common sense of humanity that united them in their goal of showing dignity and respect, knowing that loved ones could not, and also understanding that the fragmented remains might never be identified.

911

Perhaps the ultimate secular memorial in America is simply known as “The Wall.” When twenty-one-year old Maya Lin proposed the architectural plan for the Vietnam Memorial in our nation’s capital, there was much opposition, some of it quite brutal as I recall. Now, thirty years later, it is universally acknowledged to be part of our national psyche. To be there, to see the endless blocks of thousands of names carved into the smooth stone, to have to walk down, only to walk back up to re-emerge into the world gives not only the sense of the enormity of our losses, but speaks with quiet dignity and respect. People leave toys, flowers, photos, letters and military mementos to such an extent that a museum has been set up to hold them all. It is the most visited secular site in the country.

vietnam

Over twenty years ago when what was known as the Quilt Project in memory of AIDS victims was touring the country it came to Phoenix where I was living at the time. It took over the Phoenix Civic Center and there were literally thousands of quilts…on the floor, on the wall and hanging from the ceiling. As a volunteer it was my job to find the names on a computer printout that matched a specific quilt. Never will I forget the older couple who approached me for assistance. They were in their seventies I would guess and the woman was pulling a small oxygen tank behind her. We walked quite a distance until the quilt they were searching for was located. I found two chairs and left them to their grief and their thoughts.

AIDS-Quilt

Later as I was helping them to find the exit back into the hot July desert sun they told me that the quilt had been made in honor of their grandson who had died with AIDS. His sister, their granddaughter, had made it in secret. The man’s parents had been so ashamed that they had refused to hold a funeral for him. This quilt had been his sister’s memorial to him. Looking back on it now I realize that in those few minutes spent in tears and quiet contemplation sitting in front of that quilt, this young man’s grandparents were in fact making a cemetery visit. It was as close as they were going to get to memorializing him. It was a completely secular moment, but none the less powerful, and I’ll never forget it.

The needs of our communities are changing. There must be room for all who grieve…for those who rely on age-old structures and beliefs as well as for those who do not share in those traditions. Let us never say that we are not up to the task. We owe it to one another to bear witness to the pain of our neighbors, wherever that may lead.

About the Author: Mrs. Felton is a dynamic and inspiring international speaker and presents seminars throughout the United States on current grief issues. Prior to establishing her consulting business, Deirdre worked in the bereavement field for over twelve years in various professional capacities. She was formerly the Bereavement Counseling Coordinator for the Hospice of Stamford, Connecticut, pro-bono counselor on the oncology service at Morristown Hospital in New Jersey and a Bereavement Counselor at St. Barnabas on the Desert Episcopal Church in Phoenix, Arizona. She has been a faculty member of the American Academy of Bereavement since 1993. She is currently contributing editor for the American Academy of Bereavement’s quarterly newsletter. Her audiotape series on “Compassion & Bereavement” has received critical acclaim.

Permission given by Grief Digest Magazine to reproduce original article

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The NICU: The Loudest Quiet

by Mankia Sharma, MD

Editor’s Note: I invited Manika to write this article because I wanted someone familiar with a neonatal intensive care unit to share their experiences with coping with the death of a tiny infant. Although they are professionals often appearing stoic in their duties, in reality, they, too, are touched by grief.

Please be advised that some bereaved parents may find this story upsetting.

Noise is a constant part of the neonatal intensive care unit (NICU). Monitors, alarms, cries, laughter. Sounds mark every new life that enters the unit, every breath its current residents take. My first days working in the NICU served to change my television-fueled idea of a peaceful, quiet place dedicated to healing. Instead, I found controlled chaos. Everyone appeared in constant motion, there was always something that needed to be done. When a patient was critically ill, the room was charged with energy, on its toes for anything that may happen. But I also learned that silence does invade the unit upon occasion.

manikaThe loudest sound made in the NICU is that of the silence that cloaks a unit when a baby dies. This happens more often than any NICU member wants to admit, because it is the most difficult to discuss. The drapes are pulled, giving what privacy can be offered; we do our best to shut out the normal sounds of the NICU. And surprisingly, the rest of the unit understands and acts in stride. Life in the unit stands still in an effort to add its condolences. The staff makes every effort to blend seamlessly into the scene. The nurses adjust instruments around as quietly as possible. Often the only sound heard is the scratches of the doctors’ pens signing page after page of the death certificate and paperwork. Even other families who pass by the room of a grieving family know that things are different; they too walk quickly, soundlessly, to assure themselves their babies still live. Everyone’s heart aches for the family ensconced in that silent room, hunched protectively over a tiny body.

The tears that are often not seen are those that belong to the NICU staff. The obstetrics team asks us, the “baby doctors,” to meet with an expectant family when a preterm delivery or the delivery of a baby with known congenital anomalies is imminent. During this meeting, I tell the families that the baby, or babies, will become a part of my family. And I truly feel that this becomes the case. Many times, the first thing the baby sees immediately after delivery is my face. I have wondered what those wide eyes must see—the smile, the tired eyes, the concerned brow. The scientist in me recognizes that a preterm baby sees little more than light and shadows. But it is in that instant that a bond forms between that new life and me. When it becomes certain that a baby will likely not survive, the loss is that of a family member. The pain is just as striking. And yet, we the NICU staff feel that we must be stoic, we must hide our tears from the “real” family—we are not flesh and blood. We are only the sweat and will.

The concept of nurses and doctors remaining detached from the grief of a family during a patient’s death has evolved significantly. Now, we are trained to express our emotions, that it will help our healing and help the family as well. This is much easier said than done. Someone must remain in control, someone must fill out paperwork and gather the baby’s belongings and make the necessary phone calls. Too often, I am that someone. I focus on the clock. When we take away the machines and IVs and allow the parents to hold an infant for the first time, my clock starts. What time did we disconnect the ventilator? When did the baptism occur? How long ago did I give the last dose of morphine? When should I check on the family? How long should I wait to listen to the baby for heart sounds? When should I find the baby’s stethoscope? When is it ok to pronounce time of death? On TV, and in real life, we hear the doctor say “time of death…” when a patient officially dies. To this day, I have not been able to utter those words. They seem too final. They give power beyond my capacity. I will only say the time; to the parents, and to me, that is enough. In my mind, I did not decide when the baby took his or her last breath. I only recognize that it had been taken.

After the family has had its time with the baby, I often find myself enveloped into hugs, as if I were a member of that family. The repeated words of appreciation humble me and I am always at a loss for what to say. To me, I have just taken their most precious gift. My job is to heal, and I stand before them, stealing a life. But the gratitude I see in the family’s eyes, behind the tears, behind the grief, helps my own loss. I am often asked what it’s like to “lose a patient.” The death of a baby in the NICU is much more than the loss of a patient. As a medical team, we pour our hearts into each baby. Many of my call nights have been spent at the bedside of a sick baby, pacing, waiting for any signs of improvement of his or her condition. The NICU is such a foreign place to most people. So many of our parents do not have any idea of what to do, how to handle this new environment. Equipment and machines that seem to be from a science fiction movie fill a bare-walled room. In the midst of tubes, wires, tape, bright lights and constant sound lies a baby. Parents have remarked that they had to search through a jungle of technology to find their child, that they let their eyes follow the ventilator tubes. The monitors erratic waves and sounds become the only signs of life to many families; even some of our ventilators take away the normal rise and fall of each breath. It is the threat of silence that keeps the medical team motivated.

I give my patients pep talks, reminding them that there are people who depend on them, whose happiness is tied to them. Sometimes, it is not enough and these babies’ battle-worn bodies fail their strong spirits. There is a plea hidden in the depths of their eyes and an apology as well. I felt that I had failed the first patient who died in my care. My mentor at that time explained to me that we do not decide who lives or dies, we give only our support and our care. We are merely protectors for our patients and guides for their families. I still pass these words onto my colleagues in the time of loss, and I promise each day to live up to them. Our enemy is not death in the NICU, it is the silence that accompanies it.

Now, I smile each day that I walk into a unit full of chaos, as it reassures life. I smile at the crying baby whose life we were not guaranteed just weeks ago. And I laugh when I find myself covered with pee or poop—I cannot help myself, it is a sign of life and of the inevitable in my job. Along with most nurses and doctors, I come to work each day ready to accept any challenge, be it medical or emotional. Often, we give healing to each other, and someone is always attempting to bring smiles and laughs. But none of us can forget. Our halls are filled with memories, the walls lined with pictures of former patients who have grown up and beat all the odds. For many of us, however, the walk down the halls is a reminder of the patients who had not survived in each of those rooms. I remember the name of each baby who has died in my care, every final heartbeat for which I listened. The silence of each adds to the voice that becomes a promise to always help, always care, and always remember.

About the Author: Dr. Manika Sharma graduated with a Bachelor of Science (Biology) degree in 2003 from the University of Tennessee (Martin) and her Doctor of Medicine degree from the University of Tennessee (Memphis) in 2008. She completed her Residency training in Pediatrics at the Eastern Virginia Medical School/Children’s Hospital of the King’s Daughters (Norfolk, VA) in June, 2011.

Manika is currently doing a Fellowship training in Neonatology at the Pittsburgh (PA) Medical Center/Children’s Hospital of Pittsburgh/Magee-Women’s Hospital. Simply stated, she is a pediatrician doing further training to become a neonatologist. It requires an additional three-year program (after her three years for residency) where she will split her time between clinical work in the neonatal intensive care unit and in a research lab. Dr. Sharma’s research project looks at Neuroblastoma, which is the most common cancer in newborn infants.

Writing has been a hobby of hers since childhood. Although it has taken a backseat to her medical career, it is something she hopes to pursue more in the future.

Mitochondrial Disease: The Story of Two Brothers

by Sarah Kopacko

Editor’s Note: At this time of the year, many of us look for someone we can help by making their life a little brighter or lightening a financial burden.  I ask each of you to read Sarah’s story and visit the Kopacko Family website to learn more about this terrible disease and the day-to-day struggles that Colin (age 4) and Jesse (age 1) and their parents must cope with. Please find it in your heart to make a small contribution to help them with medical expenses. Thank you!

Let me start out by saying that our sweet boys mean the world to us, and have taught us how important it is to enjoy the little things in life. Most people never get to meet their heroes, but we are lucky enough to have given birth to ours!

Everything started with the excitement of finding out that we were expecting our first baby who would be joining our little family in July of 2008. We gave birth to our first son, Colin, on June 19, 2008, and other than low birth weight and some blood sugar issues, he was healthy. We took our sweet little man home weighing just five pounds when he was five days old. He struggled to gain weight from the beginning, but it is when we first tried to introduce baby food that we realized there was a problem. He was not able to eat any baby foods, or table foods for that matter, without vomiting.

We started seeing one specialist after another as well as putting him in a therapy feeding group when he turned one. No one could figure out what was wrong, but he was labeled failure to thrive and we were told he had an oral aversion. He continued to struggle to gain weight and eat anything until he was two and a half and we ended up having to get a G-tube [a medical device used to provide nutrition to patients who cannot obtain nutrition by mouth, are unable to swallow safely, or need nutritional supplementation] for him on December 9, 2010 in order for him to survive. At this point, he weighed just over twenty pounds, which is what a typical ten to twelve month old weighs. Once he got his G-tube he started gaining weight and looking healthier by the month, however things were still not easy. More and more medical issues started showing up, but it was not until our second son was born that the doctors really started taking a look at our boys.

On January 28, 2011 our sweet Jesse was born. I, Sarah, knew right away we were dealing with the same situation, but everyone just told me to take a few months to let him grow before I start to stress. As Jesse hit two months old, Jason (Colin and Jesse’s daddy) and I started to realize more and more that we needed to get a doctor who was willing to help us figure this all out.

Jesse, much like his brother, was unable to accept most baby foods, and table foods were even harder to get his little body to digest. By the time he was one, both of the boys were with a new Gastroenterologist (a branch of medicine focused on the digestive system and its disorders) and we were testing away. We found that both of the boys had Gastroparesis, which means that they have a paralyzed stomach. This explained why they were not able to eat foods without vomiting or being in massive amounts of pain. While this was an answer, we knew it was not all that was wrong, something just was not lining up.

We put both the boys on an amino acid based formula, which is already broken down so the body does not have to work as hard to digest it, to try and help their bodies accept the formula without vomiting. We continued to search for answers for the boys other symptoms which included but were not limited to; excessive sweating no matter the temperature, heat intolerance, fatigue, muscle pain, leg pain, difficulty sleeping, low muscle tone, head ache, and gastroparesis.

By June of 2012, both boys were really struggling, but Jesse was starting to lose his ability to walk and talk. On August 22, 2012 Jesse was admitted to the emergency room because he could no longer support himself and was in desperate need of a feeding tube. He got his G-tube on August 28, 2012 after four days of being on an NG tube (the insertion of a plastic tube through the nose, past the throat, and down into the stomach) to gain strength for his surgery. When his surgery was done, he went into respiratory distress after waking from anesthesia which made an already scary day terrifying. After he was stable, a group of doctors came in and explained to us that they felt that both of our babies had something called Mitochondrial Disease (Mito), and our world was turned upside down yet again. At this point, both of our boys were put on continuous feeds for twenty three hours a day, and we started looking into private duty nursing to help watch over the boys at night so that we could try and get some solid sleep.

We had been in the tube fed world long enough to know a little bit about Mitochondrial Disease, and what we did know was scary. We knew more children die yearly of this disease than childhood cancer. We knew that there were many who had reached out to us in support whose children had already passed away. We knew that it was a progressive disorder that had no treatment, and all we could do was manage their symptoms as best we could. The fear that was within us was overwhelming.

We were told that the doctors there had not seen mitochondrial cases, and that we should look into seeing a specialist. Our options were Boston, or Dr. Kendall in Atlanta, Georgia, and we decided Atlanta would be best for us. Our appointment was set for November 21, 2012 which was the day before Thanksgiving. The worry seemed to get worse as the appointment got closer, and we began trying to raise money for the trip as it all comes out of our pocket. Over the years, the medical bills have been astronomical, and we decided it would be best to set up a website for the boys where we could update people as well as raise donation money for their medical bills, treatment, and equipment. We were blessed enough to raise just enough money to make the trip and start the process of getting more testing done on the boys in order to figure out the best way to help manage their symptoms.

Early morning on the 21st of November, we headed towards Atlanta to see Dr. Kendall, and we were full of both excitement and fear. The appointment was a whirlwind of information, and allowed us to let out a sigh of relief as she started to explain how we could try and better manage their pain, and also got the boys set to get fitted for special strollers to help them get out and about more. They have a slew of testing to go through in December, and will be starting something called a Mito Cocktail by January 2013. The cocktail is a vitamin mixture that both boys will be on in order to help slow the progression of the Mitochondrial Disease. We are hopeful that the next few months will bring both of our sweet boys some relief.

The past 4 years have been spent searching for an answer, and now that we have an answer.

It is something that does not have a cure or treatment

We are more focused now than ever to make our kids as happy and comfortable as we can. We want to thank everyone for the prayers and support that we have and will receive, and invite you all to visit our website to keep up with the boys.

Continue reading this story about Colin and his little brother, Jesse on the Kopacko Family blog. For more information about how you can help, contact Sarah, Colin and Jesse’s mommy.

*all definitions courtesy of Wikipedia