Here is a series of articles written by Kathy Whelan, talking about her memories and feelings after loss of her beloved son, Mikey from 2007 to 2015.
Surviving the Holidays
My son died on New Year’s Eve. I never thought I’d be able to celebrate another holiday, but somehow I’ve watched 17 holiday seasons come and go without him. Holidays are never easy for families that have lost a child. For a grieving family, the holidays intensify the sadness and pain surrounding the loss. Celebrating feels disrespectful. For my family, the combination of the holidays and the anniversary of Mikey’s death makes this time of year particularly challenging. Memories of past holidays contrast dramatically with how you feel now. After your baby dies, the holidays are different just as life is different. In getting through the intensified grief of the holidays, you find yourself making new traditions. I never call my parents on New Year’s Eve anymore. The holidays are less about parties and more about quiet time with my immediate family. My warmest holiday memories after Mikey involve sitting with my children in front of a fire, reading Christmas stories. We stopped longstanding holiday traditions, as they just seemed to intensify our grief. Anticipating the holiday is sometimes as painful as the holiday itself. Was I ever going to be able to celebrate New Year’s again? Should I put the ornaments that celebrated Mikey’s new life on the tree? Each year, my husband and I talk about how we will celebrate. This can be challenging, as everyone grieves differently. It is important to be respectful of each other’s needs. What you need to give yourself is time—which is often in short supply at this time of year. Be gentle with yourself and surround yourself with supportive, accepting people. After Mikey died, we made new traditions. New Year’s Eve with Mikey was at home, so the next year, we went out with close friends. Some years I joined in celebrations, others I could not. This year, I will carefully put the Mikey ornaments in a place of honor on the tree. I will light a candle at midnight mass, and embrace the memory of a little boy who holds a special place in my heart.
Grief at the Holidays
My son Mikey died on New Year’s Eve when he was just 10 weeks old. When the sun rose the next day, I couldn’t believe the world was still turning, and I certainly didn’t feel like celebrating the march of time. It felt lonely to be grieving when the world is celebrating family, hearth and home. I’ve now spent 19 years navigating the holidays without my son. The year after he died, we had another baby, and we wanted New Years to be as different as possible. The night Mikey died, we were spending a quiet evening at home, watching old movies and writing Christmas thank you notes. That next year, we went to a party and held the new baby throughout the festivities. I watched the clock, wondering if I could get through the hour Mikey died. Partying didn’t seem like the right way to pass that holiday. We’ve since experimented on how to handle New Years. We stayed in. We went out. We went to mass. We went to the cemetery. We tried making new traditions. Fireworks in town. Chinese take-out. Three Stooges marathons. Nothing seemed quite right. For me, something always feels notquite-right during the holidays. I lowered my expectations of a “perfect” holiday, which is difficult for me as I’m a Martha Stewart wanna-be. We now celebrate by slowing down and seeing friends and family in intimate gatherings. If I feel off-kilter, it’s because I need a good cry, so I get out the photos and let the tears fall. How can you find the best way handle grief at the holidays? Accept that grief will be present and do what feels right to you. Not so simple when the loudest voice in your head is the angry and sad. You have to listen carefully to hear beyond the grief. This fall, a newly bereaved widow asked me to make quilts out of her husband’s old tee-shirts for herself and her two children. She wanted the job done by early March, in time for the 2nd anniversary of his death. Handling this man’s well-loved and soft-as-silk tee-shirts moved me, and I finished the quilts just before Thanksgiving. When the widow picked them up, she tearfully said she didn’t know if she could wait to give them to her children. I said, “Listen to your heart. Who says you have to mark a holiday with this gift? Give it when you feel it’s right, even if it’s an ordinary Tuesday evening. If these quilts revive memories and let you openly grieve, then maybe it will help them handle their loss a bit easier during the holidays.” She gave the quilts to her kids that evening. Presenting the quilts was a difficult but cathartic moment that helped her family talk about their loss, recall some cherished memories and celebrate her husband’s life. That sounds like healthy grieving to me. I’m not suggesting that you make a quilt. I’m saying that as a grieving person, you should give yourself some time to be reflective, to think creatively about what might help you feel the loss and learn to live with it. It’s so easy to get busy especially at this time of year. Many people use that as a coping mechanism to “get through the holidays.” But when you loose someone you love, even if it is a very little someone, do you ever want to just “get through” another day, when you know first-hand that you can’t control how much time you have with loved ones? After 19 years of navigating the holidays without my son, I still miss him, but I have found ways to quietly respect that grief and celebrate the family and friends who are still with me. Listen to your heart. December, 2008 Page 7 For you who have lost your beloved babies, I’m truly sorry. Holidays are especially hard for you. I hope you find can comfort in knowing that there are people out here, thinking of you, praying for you, hoping that you find some respite from your grief.
Twenty Years after Mikey
New Year’s Eve 2009 will mark 20 years since the terrible night we found Mikey lifeless in his bassinette. Just after my son died, I was petrified about how my life would change. Caring for a newborn is physically exhausting and emotionally consuming, so I knew the rhythm of my days and nights would be different. But the anxiety about change went deeper than the question of how I would spend my time. Would I ever be a mother again? Would I ever laugh again? Would I be angry forever? How could I ever live through another tragedy? Now, twenty years of living without my son has revealed surprising answers to these questions. Would I ever be a mother again? Mikey was my first child, so I knew in my heart, God willing and biology functioning, that we would be parents again. Over the years, I’ve talked with many, many parents who are in the throes of making the decision of whether or not to have another baby. Losing a baby, whether through SIDS or stillbirth or miscarriage hurts you to the soul. You’ve lost the innocence that life will just work out. It takes courage to try again. It means letting go of some of the despair and giving hope another chance. I’m glad we risked breaking our hearts again, for I am blessed with three living, breathing children in my care. Not only did I become a mother again, but mothering became the centerpiece of my life. Before Mikey, I worked at high-profile job in a fastpaced public relations agency. My job was how I defined myself. But after he died, I had trouble going back to that world. My husband and I cobbled out a way, through part-time and free-lance work, so I could focus my family. I know other parents whose careers changed as drastically, as they looked for meaning in their lives. When I wondered, ―Will I laugh again? The answer came the first week after Mikey died, when a toddler whispered something silly to me. My question should have been, ―How will I find joy? I found it by getting out of bed, living another day. I found joy in the warm, milky breath of Mikey’s sister. I found it in the glow of a flashlight, reading Harry Potter to the kids in a tent, pitched under a summer sky. I found joy in singing a hymn. In quilting. In walking. Even in writing this newsletter! If you can accept that life is tenuous, you can revel in every second you walk on this earth. When Mikey died, I knew I would change and that frightened me. What if I became someone who was always angry and depressed? Would his death would mark me forever? I still get angry and depressed, but it isn’t who I am, it’s just how I feel sometimes. His death did mark me, but in a good way. I’ve become empathetic to loss, allowing me to be a comfort to friends trying to live through tough times. People always say losing a child is the worst kind of loss, but you can’t measure loss. The worst kind of loss is one that you are experiencing. I imagine over the last twenty years Mikey’s been on my shoulder, paying attention to my friends who are grieving their miscarriages, their divorces, their children’s mental illnesses, their aging parents, even the loss of their pets. Mikey’s death made me a better human being. When I was pregnant with our subsequent children, I thought that I would just die myself if I had another tragedy in my life. But I lived through a miscarriage on the 5th anniversary of Mikey’s death. I lived through the diagnosis and treatment of my daughter’s eating disorder. In therapy we discovered that her quest for perfection was a direct result of her reaction to my grief in the early years of her life. Heartbreaking, yes, but I lived through all that. Part of recovering from the loss of a child is to understand that terrible, unspeakable things can happen to you and those you love. And that you can and will survive those things by opening your heart and vowing to live another day.
A Parent’s Reflections on Medical Research
One day after my son Mikey died, I received a call from Mary McClain at the Massachusetts Center for SIDS. She offered sincere condolences and told us that the initial autopsy showed that our baby died to Sudden Infant Death Syndrome. She told us we could not have predicted or prevented our child’s death. I thought, ―How could that be? How could a baby, apparently healthy one moment, die so suddenly?‖ In our culture, we often think we can control our fates. If we have the right prenatal care; if we follow the advice of our obstetricians and pediatricians; if we read ―What to Expect When Your Expecting‖ and ―What to Expect in the First Year;‖ if we are vigilant and smart and careful; then we will watch our children grow and thrive. Since the ―Back to Sleep‖ campaign started in 1992, parents think that if they just keep their babies on their back in a safe sleep environment, then their babies won’t die. And while SIDS rates have dramatically declined since the start of that campaign, babies are still dying. What parents like us want, recognizing that we can’t have our children back, is a reason why our babies died. Not just for us and for our families, but for all those families who will go through what we experienced 21 years ago (and are still reeling from). For every single baby that dies, so die the hopes and dreams of parents, grandparents, brothers, sisters, aunts, uncles, cousins. One baby’s death can affect family members for YEARS. We want money, energy and thoughtful, well-researched studies so we can answer ―Why?‖ And so, since Mikey died, my husband and I have been following the research and fundraising for the research. We’ve cut hair for SIDS, run for SIDS, played golf for SIDS, and even sponsored motorcycle rides for SIDS. Page 2 Promises This newsletter includes a brief glimpse at some of the research currently being published. In just this article, researchers are studying the role of genetics, of sleep position, of serotonin, of issues of the heart. I knew from the first time I attended a research symposium on SIDS that it would be a long time before we had an answer to why Mikey died. Consider, for example Hannah Kinney’s decades of research at Children’s Hospital. In study after study, Dr. Kinney has picked away at the problem, each project discovering a small part of a problem that may have many answers. Her early studies showed that SIDS has to do with the brainstem. Then, it has to do with the chemoreceptors in the brainstem. It has to do with a baby whose brain is at a critical stage of development and who is exposed to stressors. It has to do with abnormal nerve cells in the part of the brain that make and use serotonin. It’s a very slow process, but each step along the way, each study and counter-study, means that the medical community is getting closer to figuring out why Mikey died. The results of this study point to the next, and each study gets us closer to identifying a biological cause. I dream of a day when the medical community identifies a biological cause or causes for sudden unexpected death. Then perhaps, someday, they will discover a way to test for SIDS, or develop a drug to prevent it: something that will help predict SIDS and prevent babies from dying. As we wait for an answer to the questions ―Why did our baby die?‖ we parents will continue to support each other as best we can. We help the Mass. Center for SIDS train police and nurses and ER doctors and even medical students on how to care for families whose babies died. We show the rest of the world the long-term face of grief, so people who love and care for us can understand what we need to learn to live without our children. As you read these medical abstracts, I hope you will find some comfort in the fact each study is another small step in figuring out why our babies died.
Time to Heal
People said only time will heal this gaping wound. I wonder how much time. You lived ten weeks. Such a short time, But you changed my life more than anyone before or since. When you first died, every minute seemed like a year without you. I was surprised the sun rose the next day, surprised I took one more breath. I watched the hours pass and counted the days. One day since you died. One week since you died. One month since you died. One year since you died. Tears flush the wound, their waters life-giving. Eight years since you died. Plenty of time to heal. Slowly I build a life without you. Even as my arms ache for your warm body, as I long for the small of your clean skin, I begin to hope and smile again. People were right. Time does heal the wound, but no one told me about the scar. A scar that, even with the passing of time, tears open now and then. It opens at a glance of a sensationalized headline: “Suspicions Surface in Cases Termed Sudden Infant Death” Sobbing shakes my shoulders; tears salt my coffee. Really, I cry for Mikey: I cry for what is lost, for a little boy who in my head, grows with my family. I cry remembering a gray body laid out like a cross I cry and my face drags itself down, Quivering into its familiar frown.
I want to send you a message of hope during this holiday season, but I know that sometimes hope is too slippery to grasp for those of us who are reeling from the loss of a child. How can you hope when you are petrified it might happen to you again? I thought I would die the day my baby died, 23 years ago this New Year’s Eve. I walked the neighborhood in the early morning hours after we left Mikey at the hospital, and wondered why the sky was pink. How could the sun rise? How could I take another breath? How could fold his laundry, put away the toys, replace the rug where the EMT’s took him out of my house? In spite of my feelings that life could not go on without my son, it did go on. The sun rose and fell, rose and fell, rose and fell. Someone else put baby’s room in order. I continued to breathe in and out. I made dinners, washed my face, slept for a few hours at time, hugged my goddaughter, and even let my guard down enough to make love with my husband. After many months, I began to count days not by how long my son was gone, but by events that signified living. Hoping began by looking forward to the future, and letting go some of the fear that things might go completely awry. Part of finding hope again might have been the pregnancy of my subsequent child, which brought fear but also, when I let myself dare to dream that I might become a mother again, hope for the future. Having hope doesn’t mean that I don’t think of every horrific thing that could happen to my loved ones. I worry when my husband has to drive long distances for work, afraid that I would answer the door and find state policemen behind it. I worried about during my subsequent pregnancies, so that the obstetrician had me counting kicks every couple of hours. Can you imagine how much I worried when my daughters got behind the wheel for the first time? Or the second time? Or the 45th time? How can I let go of my fear of everything that might happen to enough so that I can enjoy my holidays and my life? After many years of fear, I learned to let go of that worry by ceding control of my life. Many people I know think that if they just follow the rules, that they will be able to control the directions that their lives take. Mikey’s death taught me that no matter how prepared I think I am for life’s ups and downs, I really have no control over what will happen to me or to the people I love. To be able to move forward, I have learned compartmentalize my fear. I have to do what I can to keep people safe, and then let what will happen, happen. My son died, and I went on living. If I can manage that, I can manage anything that life will throw me. Some people find comfort in ceding control to a Higher Power. I’m not sure myself if anyone is manipulating the puppet strings to my life, but all I know is sometimes, you can’t control what happens in your life. And whatever comes your way, you find ways to manage. This attitude lets me suspend some of the fear that can easily grip me into inaction, and find things to hope for again. If my words about hope and control don’t comfort you, then know this. I was a mess for a long time after my son died. But I lived, I sought support from the good folks at the SIDS Center and from my friends and family (and anyone else with a heart open to my pain). It may take time, but I know you will find a way to live a life that looks forward more than it looks back.
People who don’t know measure grief. They quantify how long the person lived and qualify how they died, as if one death is Easier or harder than another. Consoling, with ill-fitting hugs and mumbled aphorisms, wishing the pain away. “You can have another.” We who mourn know talk of death is taboo. Speaking your pain, excruciating. We feel our comforters’ distress. They cannot or do not want to imagine the torment. People who don’t know measure grief. We who grieve, know Grief is grief. Its face looks the same no matter the loss. The effort of holding herself together. She looked like me. I decided then to relay my story — a quiet New Year’s Eve at home that ended in a hospital emergency room— not to outdo her grief, but to share it. I hoped my story would show her no matter what happens in your life, you can and will find a way back to yourself. Doreen measured grief, and used me as yardstick — people can survive the greatest of losses. But I do not measure grief. I could not imagine how to survive. If I agreed that the death of a child is an unthinkable loss, the greatest a parent can suffer, then why did I not crumple under its weight? I am not strong. I did not want to survive this, I just did. Because I am surviving what most rank as the most burdensome death, the death of a baby, I recognize mourning in all its forms. When I look on a face in grief, I look into a mirror, distorted by time and circumstance. Three years after my son died, we moved to Illinois, where no-one knew my story. I met Doreen in the new church’s playroom. As soon as we decided to arrange a play date, I began to consider how I would tell her about Mikey. The second time we met, Doreen and I perched on the couch with teacups in hand, our toddlers running circles around us. Doreen spoke first, unloading the story of her miscarriage, one in a string that left her bereft. I recognized the grieving face: eyes shiny and brimming, mouth downturned, lips quivering people who give their hearts, as a mother gives her heart to her child, risk irreparable loss. But to not give your heart is to not live, to not love, to not participate in the fullness of what it means to be human. I believe that loss is loss, no matter who or what you give your heart to. Those who lose a beloved, no matter how or why, should be treated with compassion, no matter where the death falls on our measuring stick of grief.
Last week I was in the grocery store, stocking up for a football playoff game, waiting in the checkout line. The cashier was chatting with a young boy who was holding a balloon in the shape of Tom Brady’s jersey. “Do you read?” the cashier asked. “Yes, ma’am,” he replied. “What is the last thing you read?” Silence ensued. The cashier gave the boy some advice about books and about life. The mother gave an excuse for her son: they were getting ready for a party to celebrate his 8th birthday, which was that day. The people in line wished the boy, “Happy birthday.” “How many are coming to your party?” continued the cashier. She continued, “I didn’t give him a party for his eighth birthday. I said he could wait for next year.” The man behind me shifted on his feet, silent. “I never got to give him another birthday.” I stopped swiping my card and looked the cashier in the eye. Sometimes, you expect grief to strike at you, seize at your heart, strangle your ability to live in the moment, overcome with bittersweet memories of the past. Those are the days we anticipate, birthdays, anniversaries, Mother’s Day, Father’s Day, and the holidays. Sometimes, however, grief surprises you unawares, in small moments that you didn’t anticipate. I shared my shorthand speech, adding, “I still get surprised by what makes me sad.” “It’s just that the boy, he was eight …” “Eleven,” said his mother, smiling down on her son. The conversation continued as the cashier finished and packed away cupcakes and juice boxes. The boy and his mother pushed the cart toward the parking lot. As the cashier turned to me, words tumbling from her mouth: “Two years ago, my son died on Halloween. He was eight.” And then, quickly, “I don’t know why I told you that.” But I knew. I recognized that speech. It was shorthand, the bare facts of a story of heartache and unimaginable loss. This was the way she always began the story of her son, just as I start the story of my son. He was 10 weeks old: he died 25 years ago on New Year’s Eve. Every time she shared her story, she was finding the words and the way to weave that heartache into her own life. I left the store, thinking of the cashier and her son, and of all the people who mourn. I appreciated that the people behind us gave us that moment. That she could tell a random person about her son. That she could try, one more time, to practice the words that will help her toward some kind of peace.