Living With Grief
Helping others through shared experiences
Many people can feel alone in their grief, not realizing that others have similar thoughts and experiences. Hear from other people and families about how they are coping and navigating their lives after losing a loved one. We welcome you to share your own stories or articles about living with grief. Submit an article.
Many of us like to be in control…at least in control of our own lives and our hopes and dreams. But even if we’ve carefully calculated the course of our life and worked hard to let no details slip through the cracks, we still encounter times when our lives simply don’t go according to plan.
Most often, these “hiccups” in life are disappointing or even hurtful, but most are not insurmountable. For example, when a marriage ends in divorce it may bring a level of pain and regret that feels like you won’t ever recover from it, and yet most people do pick up the pieces of a broken heart and go on to find love again.
Perhaps, as in my case, you unexpectedly get laid off from a job that you’ve put your heart and soul into for years. You may find yourself feeling hurt and betrayed…and in the difficult position of having to scramble to find a new job before the next round of bills are due. You may have to reevaluate your career path or even your lifestyle, but I’ve heard countless stories where someone lost a job and then went on to find a better one. That’s been the case for me in the past.
So what do you do when you encounter a major roadblock in life?
Some people refuse to give up on their previous plans, and charge forward come hell or high water. That’s great for them, but some of us don’t have the resources or personality needed to do that. Some people seemingly give up and descend into a personal prison of hopelessness. They tend to withdraw from life and some choose unhealthy ways to escape from the pain.
Most of us find ourselves somewhere in the middle. We still have dreams, but may find ourselves having to rethink the shape, size and scope of them. Some of us may surprisingly come to the realization that our previous plans were actually keeping us in unhealthy or limiting situations…so we make new plans. Chances are if you look back on your life to see where you’ve encountered roadblocks and where your new path led you to; you may actually be quite pleased.
But sometimes, life’s roadblocks are so devastating; we simply cannot see a way forward. Most often, this happens when you lose someone that you’ve built your life – or your identity – around.
In these cases many of us find ourselves frozen in feelings of anger or despair and are unable to comprehend our life without our loved one in it. Some of us simply refuse to accept this new reality and isolate ourselves and withdraw from the “regular” world; resentfully thinking that if life isn’t going to go according to our plans, then we refuse to participate in it until it does. That’s a nice thought, but life often has a habit of ignoring our demands, especially if we simply cannot undo what has already been done – in this case, the death of a loved one.
I found myself in this situation after the sudden death of my 4-year-old daughter, Margareta. Unlike losing my job, where I can simply look for a new – and even better – one, there was nothing I could do to turn the death of my daughter into a better situation. I couldn’t replace my daughter with a new one (and for those who have insensitively told a bereaved parent that they should just have another child…next time, please do all of us a favor and keep your thoughts to yourself). I couldn’t pretend that I’d ever find that elusive “closure” that many people talk about, but doesn’t exist in these types of situations.
I was hopelessly, utterly lost. I didn’t know what to do or which way to turn. And yet, as it always does, life moved on whether I liked it or not. It moved forward without my daughter in it. I was desperately trying to find a way to keep one foot in the world where my daughter was still alive, while keeping the other foot in the present day world where my other children still resided. I don’t advise anyone to try this…it simply does not work.
So here I was, forced to make new plans; plans that did not include my daughter growing up and living a full life. I hated it. I resented it. To this day, I still regret it and probably always will. And yet I am forced to live it. And I suspect that many of you reading this are forced to live with that reality too.
The fact is I have made new plans. While these plans will never be the ones I truly want, because they will never include my daughter alive in them, they try to make the best of an impossible situation. They try to honor her life while honoring the fact that I’m still alive and so is the rest of my family. They will always include sadness and regret intermixed with hope and joy.
And I know whatever my plans may be; they are always subject to change…because life has a habit of sometimes getting in the way.
We all have defining moments. In fact, our lives are filled with them. I would describe these moments as stepping though a portal of experience that reshapes the world you live in. Once you’ve been through one of these portals, you can never return to the world you once knew; you can never un-learn what you now know. The question becomes, what do you do with this new knowledge?
Some of these portals are pleasurable and filled with awe and wonder. They could be like the freedom of getting your driver’s license or living on your own for the first time, getting married, or the experience of having your first child. These types of defining moments are often filled with self-esteem, empowerment, or profound love. They can expand your horizon of what you consider possible in your life or deepen your understanding of what true happiness is. These portals often represent your life at its best.
Unfortunately, the majority of our portals are sources of pain and fill us with fear and dread. They are moments that are galvanized in our minds as ones we never want to experience again and will go to great lengths to avoid in the future. They can be moments of utter failure or disappointment. They can be moments of betrayal or disillusionment. They are often referred to as life lessons, and they generally start when we are young.
Do you remember the first time you were bullied? Or the first time you failed a test or got caught cheating? Did you have a best friend who – for no obvious reason to you – decided not to be your friend anymore? Did you come to the realization that you could never seem please your parents no matter what you did? What about your first major break-up from the person you thought was “the one”? They could even be more significant events, such as the divorce of your parents, the death of a loved one, or abuse at the hands of someone you trusted.
If these were life lessons, what did they teach you? Chances are, rather than teaching you resilience, deeper self-awareness, or how to better express your feelings, these portals led to self-imposed lessons of avoidance, mistrust, self-doubt, suppression of your feelings and emotions, and the underlying belief that most of the time, life just isn’t fair. We may have even come to believe that overall, the world is a frightening and dangerous place. Regrettably, these portals of fear and pain often just lead us to more of the same.
As we get older, these negative portals seem to adapt to our changing situations. Perhaps you’ve been cheated on, gotten fired or laid off from a job, been divorced, or suffered a major accident or setback. In many cases, these painful situations seem to outnumber the positive ones, reinforcing the notion that at its very core, life is hard.
This realization is perhaps the most painful of all. Some people try to numb themselves to the pain with drugs and alcohol. Others may turn to even more destructive behavior in the belief that the odds are stacked against them and life will never become easy or fair. Some put their trust solely in their God. And some never lose sight of the idea that the “grass is greener” on the other side of some invisible hill…if they could just figure out how to get there…without knowing where “there” was.
For the majority of my life (so far), I fell into this last group. I thought for sure that if I just learned how to better control what happened to me, I would be able to find the life I was sure I was meant to be living. The life that was filled with self-esteem, unconditional love, success, and true happiness. In other words, a life that was easy.
I purposely went through portals that I thought would lead me there. I got married. I worked my way up the career ladder by being the best employee possible. I had my first child. But despite all of these positive experiences that changed me forever, I never found a place where the grass was always green. Intermixed with grass I found many weeds, holes, and even dead spots where nothing was able to grow. I continued to be disappointed in life.
But I trudged on. After a divorce, I married again with a better understanding of myself and my needs. My family grew and it brought more purpose and joy to my life. I continued to develop my successful career path. Of course, all of this was intermixed with setbacks and painful experiences. Throughout it all, I kept looking for that illusive hill where the grass was greener on the other side. But I began to wonder if that place really existed.
In the fall of 2009, I walked through the most painful portal in my life. The sudden, accidental death of my 4-year-old daughter, Margareta, turned everything I knew on its head. I detested this portal with every ounce of my being. I desperately wanted to run back through to the other side and erase everything I had just experienced. Yet, as I mentioned earlier, there is no going back once you’ve crossed through a portal.
This particular portal seemingly transported me right back to that fearful place of my childhood where the world was impossibly unfair, dangerous and scary. And yet this time, I had the apparent advantage of almost 40 years of life’s experiences behind me. But to my surprise, many of my past lessons of avoidance, control, and suppression no longer worked. This pain was too deep and too large.
Not having ever been one to numb pain with drugs or alcohol, for the sake of my very survival, I was faced with the task of having to battle this unbearable pain head on. With a chest full of tools that no longer worked, I felt compelled to reach out for help in dealing with this overwhelming pain. For the first time in my life – and full of fear – I began to break down the innermost barriers that guarded my deepest, most vulnerable thoughts, feelings and emotions. I no longer cared about the possibility of rejection or being at the mercy of someone else. The worst had already happened.
The death of my daughter led to years of working diligently and purposefully to learn new tools that would help me work though pain in order to learn from it or let it go, become more self-aware of my needs and feelings, and most importantly, develop a deeper understanding of what I want in my life. In essence, this portal was a catalyst to the most meaningful personal growth I have yet to experience.
Albert Einstein once said, “The only source of knowledge is experience.” And while I will always regret the death of my daughter, I will forever appreciate what it has taught me – and will continue to teach.
Chances are, you’ve heard of the stages of grief Dr. Elisabeth Kübler-Ross introduced in her 1969 book, “On Death and Dying.” The stages are:
It is a very nice idea that you can break grief down into defined segments that have a clear beginning and end. This way, you would know when you’re done with one stage and when to move onto the next in progression until you’ve accepted the death and come to peace with it. It would be nice…but reality isn’t so simple most of the time.
A common misconception about the stages of grief
For several months after my 4-year-old daughter’s sudden death in 2009, I saw a psychologist who specialized in end-of-life and grief counseling. When I asked about the stages of grief I had previously heard of, she said she had actually studied under Dr. Kübler-Ross when she was younger. She explained that one of the most common misunderstandings about the stages of grief is that Dr. Kübler-Ross was using them to describe the similar experiences of many terminally ill people facing their impending deaths – not of someone who had lost a loved one. However, since grief from losing a loved one shares very similar emotional responses, the stages of grief became widely assigned to both those who were dying and those they left behind.
Most explanations of the stages of grief now include the caveat that grief is a unique journey and many people don’t experience these stages in a prescribed order, and some may never experience all five of the stages. Instead of a roadmap, these “stages” might be more accurately described as “reactions” to grief, and should be used to help us understand some of the more common emotions experienced on the journey of grief.
Choosing a new vocabulary
The problem with words is that they may carry different meanings to different people based on personal experience. The five stages didn’t particularly resonate with me because my definition of those words didn’t seem to match what I was experiencing. In hindsight, and from my perspective of losing a 4-year-old child in a sudden accident, I would change these words so that they might better describe some of the common experiences shared by those who’ve lost a loved one.
1. Devastation instead of Denial
When someone hears that they are terminally ill, I can understand why they might deny the validity or reality of their diagnosis. After all, we continually hear feel-good stories of people who beat the odds, or were misdiagnosed, or found some alternative treatment that miraculously cured them. It would be expected that their instinctual survival mode would kick in and they would convince themselves that they will be one of the lucky ones…because the alternative is too scary to accept.
In the immediate aftermath of a loved one’s death, the pain is so overwhelming it is impossible to comprehend how you can survive it. You cannot wrap your mind around how you will go on living in a world that no longer includes your loved one. The word that best describes how I felt during this time was complete and utter devastation.
Just like the denial of a terminally ill person, in an attempt to avoid the pain, your mind can pretend the death didn’t really happen. You might continually expect them to walk through the door, or be on the other end of the phone when it rings. You might keep telling yourself that this has to be a nightmare that you’ll soon wake up from. While some people never experience these illusions, for others it can go on for months or even years. But unlike a terminally ill patient who is told of a future probability that hasn’t happened yet – and therefore is not absolute – you cannot change the fact that your loved one died. You are simply trying to avoid the devastating pain that comes with that reality.
2. Anger is still Anger, but also Avoidance
There is no denying that with any kind of loss, you are bound to experience some amount of anger. You may be angry if you feel your loved one’s death was avoidable – especially if it was at the hands of someone else. You might be angry at God. You may be angry at yourself. You can become angry at your family and friends for saying unhelpful (or even hurtful) things to you and not supporting you in the way you want them to. You may even be angry at your loved one for dying. Many people often become angry that the rest of the world continues to go on, not seeming to acknowledge or care that you just lost one of the most important people in your life and you can’t figure out how you’re going to live without them.
I’ve read before that sometimes anger is your mind’s way of deflecting other, more vulnerable emotions you don’t want to experience. These could include fear, shame, guilt, helplessness, or simply a pain so deep and intense, you have not yet developed the tools you need to deal with it. Anger, on the other hand, is familiar. It is a primal defense against external threats. Yet anger isn’t meant to be prolonged or a tool for avoidance. You shouldn’t deny your anger, yet you shouldn’t let it keep you from learning how to better understand and then deal with all of those scarier, more vulnerable emotions.
3. Bargaining is replaced by “What if…?”
I can understand how a terminally ill person would feel compelled to try to change the prognosis by trying to make a deal with God or the universe. But in the case where our loved one has already died, we no longer have any bargaining power. Instead, many people find themselves replaying the events that led up to their loved one’s death in their heads in a futile attempt to re-engineer how the outcome might have been altered. The bargaining of a terminally ill person is replaced by, “What if…?”
What if they had gone to the doctor sooner? What if they hadn’t gone on that fateful trip? What if we had understood the warning signs for what they were instead of brushing them aside? What if, what if, what if…? There are endless variations of decisions we could have made and actions we could have taken. Many of us go through this heart-wrenching exercise in a desperate attempt to regain the previously held illusion that we are in control over what happens to us in our lives. But try as we might, all of these “What if…?” scenarios only end in feelings of regret, helplessness, guilt, or misery. The sooner we decide to stop asking, “What if…,” the sooner we are able to begin the slow journey of tending to our broken hearts.
4. Overwhelmed replaces Depression
Read a list of the symptoms of depression when you’ve recently lost someone dear to you, and you’ll likely identify with most of them. However, I’ve heard some psychologists and grief counselors argue that instead of calling it clinical Depression, it is simply our natural response to such a significant loss. It includes feelings of sadness, emptiness, and hopelessness. It causes complete and utter exhaustion, sore muscles, loss of appetite or mindless eating. It can cause severe insomnia or feeling the urge to escape a painful reality with constant sleep. It can even bring feelings of wanting to end your life; thinking it is the only way you’ll ever escape the unrelenting pain. Regardless of whatever you or others want to call it, it is what it is: completely overwhelming.
When the overwhelming feelings and emotions interfere with your ability to go back to work or just go about your daily life, some people choose to take medication. Others oppose it. Regardless of what you decide is best for you, the important thing to remember is that what you are experiencing is a normal reaction to such a devastating loss. In my personal experience, it is important that you be patient with yourself and allow all of these feelings to wash over you in order to process them and eventually let them go. The more you try to repress them, the longer they will stay.
5. Acceptance becomes Healing
In the case of a terminally ill patient, I think the idea of acceptance is to stop fighting, and find a way to come to peace with the inevitable reality of impending death. I can imagine this is the most difficult step of all…and some may never reach it. Similarly, some who have lost a loved one – a child in particular – may never come to “accept” the death. To many, acceptance often implies agreement or approval. To others, acceptance may imply severing ties to a past we cannot let go of. Acceptance doesn’t have to mean any of this. In the case of losing a loved one, acceptance may simply mark the moment we are ready to begin our journey of healing.
Our loved one is dead; we can’t change that. Instead, we have two choices. First, we can choose to stay wrapped up in a security blanket of misery. Why? Some feel it is the strongest, most palpable connection we have left to our loved one. It may feel as though we would be betraying or diminishing our love for them if we were to ever be happy in a world without them. I have been there myself, and place no judgment on those who are not ready to leave that world.
When you are ready, you can choose to begin to find a new way forward in a world that may not include our loved one, but continues to acknowledge and incorporate the deep, profound love we still feel – and always will. We can choose to embrace the overwhelming pain and learn from it. We can learn what matters most to us, and then invite more of it into our lives. We can learn to allow joy and happiness back into our lives. We can choose to heal.
Those are my choices for new words to replace the traditional “stages” of grief. If those don’t resonate with you, then replace them with ones that do. Ultimately, the stages – or reactions – of grief are only there to let you know you’re not alone in this journey.
Wishing you peace.
When grief is new, it is excruciating and overwhelming. Many people get stuck in a quicksand of pain that is so thick and intense, it feels impossible to escape. As you struggle through those first few days, weeks, and months, you begin to be pulled so far down into it, you can’t imagine how you’ll survive. I certainly felt that way. I’m grateful that those days are behind me.
And yet you do survive. Despite all odds, you wake up each morning. Your body still functions. You find a way to quietly camoflauge yourself within with the “normal” world around you. You learn to live one day at a time. One moment at a time when the day is particularly hard. Slowly – and painfully – you begin to acclimate to a world without your loved one in it. You do it because you have no other choice.
Over five years after the death of my 4-year-old daughter, Margareta, I’ve acclimated as best I can. I’ve continually faced and dealt with those painful feelings and emotions using every tool I can think of. I still go to grief support groups. I write about grief. I talk to a grief counselor when I feel the need to. I talk about Margareta with those who want to hear. I’ve come to terms with the impossible reality that she is gone and never coming back.
My grief over my daughter’s death will never go away. Ask any grieving parent and they’ll tell you the same. We’ll never “get over it”. What we have to do is accept it and learn how to live life despite of it. I’ve heard some bereaved parents don’t like using the word acceptance. That is because they associate the notion of accepting their child’s death with being okay with their child’s death. But you can accept the reality of something without ever being happy about it; without ever being okay with it. You can’t change the past, so you might as well accept it in order to begin to be able to heal from the devastation you find yourself in.
I have healed a lot in the past five years. The open, oozing, excruciating wound of my broken heart has since scabbed over. I’ll always have the painful scar that reminds me throughout every day that my daughter isn’t here. It’s that constant reminder that is the hardest for me now.
I’m grieving a future I’ll never have. I’m reminded every day of what could have been, but can never be. I’m grieving lost hopes and dreams. I’m grieving the loss of my only daughter and the mother-daughter relationship I only had a glimpse of. Instead of the intense, searing pain of early grief, it has transformed into a dull ache I’ll never escape from.
I don’t think I’ll ever feel fully at ease with this constant ache. I’ll always miss my daughter. I’ll always regret that I didn’t get to watch her grow. But I’m dedicated to learning how to live a happy, meaningful life despite of it. I do this in her honor. I do it in the honor of my other children, husband and family. I do it because I didn’t physically die when she did.
In her four short years, my daughter lived life to the fullest – full of love, honesty and without fear. It is now my goal in life to do the same. I know she would have wanted it that way.
If you’ve lost someone who meant more than life itself to you
you’re not alone
If you can’t believe they’re gone
or that they’ll walk through the door at any moment
or that they’ll be on the other end of the phone when it rings
or you can’t bring yourself to delete them from your phone contacts
you’re not alone
If you can’t fathom how you’re going to go on living
but somehow you wake up every morning
and somehow you go back to work because you have to
and you can’t understand how the world can just go on like it was before they died
you’re not alone
If you’re angry at your god or the world
and can’t stand hearing people laugh
and don’t think you’ll ever be able to be happy again
and bite your cheeks to keep from smiling at something funny
because you think if you are anything other than miserable it is a betrayal of your loved one
you’re not alone
If you sob uncontrollably
and make those around you uncomfortable
or you can’t cry at all and wish you could
or you cry over things that aren’t sad and have nothing to do with your grief
you’re not alone
If you feel like you’re going crazy
and think things like how cold and wet they must be at the cemetery when it rains
and can’t seem to remember simple things anymore
and hear their voice when they’re not there
you’re not alone
If you feel so exhausted you can barely stand
and every muscle in your body is sore
and your heart literally aches
and you feel nauseated
and you either can’t sleep or can’t stay awake
you’re not alone
If you feel isolated and alone
and completely misunderstood
and feel like you no longer relate to your family and friends
and even lose some relationships you thought would last forever
you’re not alone
If you feel like you’re losing all hope
and even might feel like life is not worth living anymore
and even might have thoughts about ending your own life
please reach out for help
because you’re not alone
While your loss is unique to you
others have experienced similar losses
and others have experienced similar thoughts and reactions
and others have made it through those impossible early days
and others have learned how to be happy once more
and others have even learned how to live a meaningful life
and others are here to support you on this journey
because you’re never alone
and people care about you
When you see me, you probably see what you would consider to be a strong person. You see someone who appears to be living the “American Dream”; juggling a successful career, a beautiful family, a healthy social life, and even time to volunteer for a good cause. You see a person who came back from the death of a young child, and – as you usually put it – has moved on with life. You see someone who has seemingly taken lemons and turned them into lemonade.
But unless I want you to, you don’t really see me. You see me through a veil that I wear. A veil that lets you see a version of me that I think you want to see.
I began to wear this veil as soon as I started to have to interact with the world a few weeks after my daughter’s sudden death at four years old. When I first put the veil on, it felt awkward and didn’t fit well. But I put it on because your reactions to my overwhelming grief seemingly made my life even harder than it already was. I put it on because I couldn’t handle your looks of pity, your awkward pauses, or sometimes your indifference to my pain. I wore the veil because I didn’t want to call attention to myself in my darkest hour.
When I had no choice but to go back to work, you saw someone who didn’t smile or interact with you much, but you thought that was to be expected – at least for a little while. From your side of the veil, I appeared to be throwing myself back into work with a passion and concentration you hadn’t seen before. You even commented on how impressed you were with my work ethic. After avoiding me and leaving me to myself for a few weeks, you decided it was time to go back to your normal interactions with me. You casually asked how I was and expected the standard, “I’m good, how are you?” You apparently thought it would be good for me to start telling me again of your latest dramas and the juiciest gossip. You wanted me to feel included again.
From my side of the uncomfortable and ill-fitting veil, I was barely able to hold a thought for more than a few minutes before my mind turned to my daughter, her death, and the nightmare I was living in. All the while, I was desperately trying to hold back the tears that were constantly welling up behind my eyes day after day and week after week. I used the veil to try to shut you out so I could use all my energy just to get through the day without bursting into tears and screaming at you all to shut up because I didn’t care about work, your dramas and gossip. None of it mattered any more. Nothing mattered any more. I bit my tongue, painted on a fake smile, and told you I was “fine” for your convenience…and by the way…you’re welcome. I guarantee you would not have liked being around me without my veil on at that time.
When I saw you in the supermarket or doctor’s waiting room or my kids’ soccer and baseball games, you saw someone who usually avoided eye contact but smiled back at you and said hello if you managed to catch my eye. You saw someone who politely made small talk with you and seamed perfectly personable. You asked the standard question when you saw me with my four boys: “Are you going to try for a girl?” You didn’t notice that I flinched when you said it. If I was in the rare mood to tell you the truth, you heard my brief, but sobering statement that I had a daughter who had died. You said a brief condolence and then politely changed the topic, stopped talking, or said goodbye.
Behind my veil I constantly pleaded in my head for you to not look my direction. I just wanted to stay invisible and avoid your small talk. Behind my veil it was exhausting to keep up appearances for your side of the veil. When you did engage me, I summoned up all the energy I had to pretend to be normal; to pretend my world was still the way it was before she died. When I heard you start to ask the question I dreaded most, thoughts raced through my mind of how I should answer. Was it betraying her to pretend she hadn’t existed so that I could avoid prolonging this torture? Most often I gave my standard response that politely laughed it off and said, “No, four kids is enough,” in hopes you would change the subject.
The veil has changed a lot in the last five years since her death. I got so used to wearing it that it began to feel comfortable and even normal. Even though it began to feel normal to wear, I never fully embraced it. I looked forward to the times I could take it off and just be myself around you. As I changed over time, so did your reactions. As I learned how to better harness the pain of losing my daughter into learning how to live a more meaningful life, my grief softened and felt less threatening to most of you. I’ve learned to surround myself with those of you who don’t want me to wear a veil, and for all of you I am truly grateful.
These days I don’t wear my veil very often. But I keep it in my back pocket and wear it on days that are particularly hard – often for no apparent reason. I wear it when I get triggered in public by certain special events, an innocent comment, disturbing image, or the sounds of sirens screaming by.
The veil was an invaluable tool when I was early in this journey of grief, but I would love to live to see this society become one that tolerated authentic grief in a way that made the veil altogether unnecessary. Wouldn’t that be something.
“Time heals all wounds.”
If you’ve lost someone dear to you and find yourself in the darkness of grief, I’m certain you’ve heard or read that refrain numerous times already. It’s a nice thought… but the truth is not so simple and clean cut as that. It makes me think whoever coined the phrase hadn’t yet suffered the devastating loss of a loved one that both shatters and redefines the world you live in.
Another new year was ushered in this past week. It will be another year that my daughter did not live to see. It is another unwelcome reminder that she has been gone for more years than she was here to experience. It takes me further away from her – from her birth, her short life, and the impossible moment of her death.
It is distance.
Distance is a difficult concept to grasp or explain in the context of grief. It is both good and bad at the same time. It is both painful and liberating. It can both soften your devastation while solidifying the difficult reality of loss. It can help close the door to the agony of early grief, just as it unearths new aspects of grief that you hadn’t expected…and weren’t altogether ready for.
I am thankful for the distance between where I am now and the horror of the day my daughter drowned. I no longer experience sleepless nights for fear that if I close my eyes I might be forced to see those images I’d rather wipe from my mind altogether and relive the worst day of my life. I’m no longer a complete wreck who can’t manage basic functions in the world around me. I am no longer at the mercy of uncontrollable waves of emotion that might leave me a crying, angry, trembling mess for the majority of the day.
But it isn’t just distance. It is distance combined with hard work. If I had not acknowledged my grief or faced my emotions head on, I might still be trapped in a web of despair concealed by numbness. I might have completely cut myself off from any meaningful interaction with life. I might have swallowed my pain and pushed it so deep that it transformed itself into a devastating and debilitating illness.
Time alone does not heal all wounds. Time just gives you more opportunities to work through your pain…or to find new ways to try to hide from it.
Distance has given me the perspective that the four years I did get to spend with my daughter is much more than those who are denied the opportunity to have children in the first place, or who lose them before they even take their first breath. And while I am forever grateful for having more than a few days, weeks, or months with her, distance also makes me somewhat envious of those who got to spend more time – even decades – with their children.
Four years worth of memories of my daughter don’t add up to much. I don’t have a treasure trove of stories to tell. The milestones are limited and weren’t cataloged all that well to begin with. After all, I was expecting a lifetime of them. She didn’t have friends, lovers, or children who will remember her in perpetuity. Her brothers were too young to remember most of the time they spent with her.
All those everyday moments I took for granted are eroding away on the treacherous path of distance. Details are being lost to time. My mind tries to fill in the gaps based on pictures or conjecture, but it only serves to make me question the validity of those memories I once felt so sure of. When memories are all you have, distance becomes your enemy…and a new form of grief.
I don’t know what distance has in store for me. Each passing day, week, month and year seem to bring new healing and personal growth – and for that I am truly grateful – but it is always with an undertow of longing. I suppose it is representative of life itself. With love comes pain. With pain comes understanding. With understanding comes growth. With growth comes wisdom, purpose and fulfillment.
I suppose if I am forced to live the rest of my life without watching my daughter grow, I will continue to try to grow and thrive in her honor. From that perspective, I can’t wait to see what the future will bring.
The holidays can be a lonely and difficult time for people who have lost someone close to them. Lonely from the isolation they feel at secretly – or not so secretly – resenting the joy the season brings when they are filled with despair so deep that it colors their every thought. Difficult because the overwhelming pain of missing someone so dear to them leaves them feeling as if it would have been easier if the world itself had just come to an end when their loved one died.
When you experience a loss so profound that it shakes you to your very core, your outlook on life inevitably changes. Things that once seemed important may tend to appear trivial in the sobering reality of the fragility and unpredictability of life. In this light, the materialism of Christmas and other gift-giving holidays might seem unimportant to them. Short of bringing their loved one back from the dead, they may not want to receive anything that can be wrapped in a box.
Thinking back to that first holiday season after my four-year-old daughter’s death, I didn’t want to receive gifts at all. What I craved the most involved no wrapping paper or bows. Many days I didn’t have the energy to venture out of the house or sometimes even to talk, and would have appreciated the simple act of quiet companionship. Sometimes all I wanted was a loving hug and someone to cry with.
Over the years since my daughter’s death, my grief has evolved and my needs have changed. However, one thing has remained the same: I miss hearing her name. After the first few weeks and months after Margareta’s death, most people stopped talking about her. It had become too painful for them. It is very isolating to feel the pain of missing someone, constantly think of them, and yet feel as though the rest of the world has forgotten about them.
The best gift family and friends could offer me now is the gift of hearing them say her name out loud without me bringing her up first. I would love the simple act of hearing them say, “I thought of Margareta today. I really miss her.” It might bring tears to my eyes, but it would bring happiness to my aching heart.
So the song goes, it’s the “most wonderful time of the year” for many. Whether you celebrate Christmas, Hanukkah, Kwanzaa, Winter Solstice, etc…this is most certainly a holiday season. Sparkling lights and decorations adorn many houses and stores. Holiday advertisements, shows and songs saturate the airwaves. Cards from relatives, friends and vendors arrive day after day in the mail. Party invitations are sure to follow. You can’t help but see the joy and excitement in the faces of children and adults alike.
The problem is, there are a group of people who don’t see this as a season of joy – but one of dread. Dread of the constant reminders and inescapable torture of the pain associated with the loss of a cherished loved one during a time of year almost exclusively focused on celebrating family.
These people often suffer in quiet anguish, wishing they could completely shut out the outside world and all of its overwhelming holiday noise. They begin to resent the relentless happiness and joy…and may even come to hate this time of year.
My husband and I lost our four-year-old daughter, Margareta, in the fall of 2009. The Halloween and Thanksgiving that quickly followed had been very painful, but the anxiety of the impending first Christmas without her was devastating. How could we possibly celebrate a holiday primarily focused on children when one of our children had just died? While both of us would have preferred to skip Christmas altogether, we still had three other boys who believed in Santa.
In an attempt to try to alleviate some of the pain, we decided to alter our normal routine slightly. It was an effort to not just go about “business as usual” when there was nothing usual about this Christmas – much less life – anymore. So, instead of buying a regular Christmas tree, we borrowed a friend’s artificial tree. It wasn’t much different than a real one, but at least it was different.
Knowing it might be a confusing time for our boys, we took them to a workshop for bereaved children at a local hospice that was designed to help them navigate their conflicting feelings during the holidays. They made memorial candles for their sister and ornaments featuring her pictures. Guided by grief counselors, they shared their feelings with other children who had lost parents and grandparents.
Nevertheless, we were faced with the reality that preparing for Christmas must go on. Shopping for presents for our boys was pure torture. Walking past all the beautiful party dresses Margareta would have loved to wear, and seeing all the toys she would have wanted made me constantly have to fight back the tears amid the thick crowd of holiday shoppers.
We were faced with a new quandary: we couldn’t buy her gifts anymore; she wasn’t there to give them to. In the weeks before Christmas, one of our boys wondered aloud whether Santa knew if Margareta had died. I told him yes, Santa knows she died. It was quickly followed by the question, “Will he still bring her presents?” I didn’t know what to say, so I said as much. “I don’t know, but I’m sure Santa will know what to do.”
The truth was I didn’t know. This was all new territory and incredibly painful. My husband and I discussed whether we should participate in one of those programs where you can fulfill the wish list of a child in need, but it was all so overwhelming, we didn’t do it that year. Instead, we followed a suggestion I had read for people grieving during the holidays. I asked that we all write a note to her and put them into her stocking. Ultimately deciding that Santa would not leave her stocking empty, I purchased a wind chime I thought she would have liked. That was her only present.
Christmas morning came and the boys rushed to find the presents Santa had left them. They were lost in the magic of excitement while we stood by with smiles painted on our faces. We did find comfort in their joy, but it was hard to watch. After some hours had passed, we drove to the cemetery to hang up Margareta’s wind chime on a tree near her grave. Let me tell you…there is nothing quite as sobering and heartbreaking as having to visit your four-year-old daughter’s grave on Christmas day to deliver her present.
In the five years since her death, Christmas and the holiday season has become significantly easier. After years of difficult grief work, we have once again discovered the joy the season brings. We see it in the faces of our children. We look forward to sharing the excitement of our youngest child – born a year after Margareta’s death. We can truly celebrate the season once again.
Of course that doesn’t mean the pain is gone…just softened. As I wander through the stores during the holidays now, I face a new kind of pain. Instead of seeing what I know she would have wanted, I’m faced with the reality that I don’t know what she would have wanted. I don’t know what my daughter would have liked at nine-years-old. It is a hard reminder that we didn’t just lose our daughter – we lost our future with her in it.
So, if you find yourself dreading the impending holidays, know that you are not alone, and there are plenty of people that understand how you feel. Also know that as time goes on, it will get easier to handle, and one day you may come to find joy in the season again.
Wishing you peace.
The day after my four-year-old daughter Margareta’s death in 2009, we received a call asking if we would be willing to donate her heart valves and corneas. Being believers in the benefits of organ donation for years, we agreed. I was told that day that while the corneas would only be viable for a short amount of time, the heart valves would be frozen and kept for two years in hopes they would help give another child a second chance at life. During the call, I asked to be notified if and when any were used.
Over the next few years, we received occasional grief support letters and cards from the transplant organization, but we never received any word that Margareta’s heart valves had been transplanted into someone else. As the end of the two year time frame neared, I decided to email the organization to get confirmation that there was no longer any chance her heart valves would be used so that I could stop wondering about it. This was a week or so before Thanksgiving 2011.
The day before Thanksgiving, I received a call from Maggie, who was in charge of donor relations. She told me she had received the email and it took her some time to look up Margareta’s files. She apologized, saying that it was not noted in our file that we had requested notification of transplants. What she said next took my breath away. One of Margareta’s heart valves had been sent to New Mexico, but had not been a perfect fit and sent back. After that, one of her valves had been sent to California (the state we live in) and had been transplanted into a five-month-old baby boy. We have no other details, and were told that it is entirely up to the recipient’s family to initiate any contact between them and our family. I immediately started crying.
I don’t know who this boy is or if we’ll ever meet him. All I know is that a piece of Margareta’s heart has helped give him a chance to live the full life that she didn’t get. While I’m quite certain that this boy and his family are thankful every day for this gift of a second chance at life, on this Thanksgiving I want to tell him a little bit about the girl who literally gave a piece of her heart to him.
We don’t know each other, but our lives are now forever intertwined. When you were five months old, you received one of our daughter’s heart valves in a procedure that I can only imagine gave you a renewed chance at a long life. The heart valve belonged to our daughter, Margareta, who died shortly after her fourth birthday. While we miss her terribly and always will, we are able to find some solace that she was able to grant you the gift of a healthier, longer life. There are a few things you should know about Margareta, and my hope is that they will inspire you in some way.
In her four short years, Margareta lived life to the fullest. While she loved dressing up and embracing her inner princess and diva, she wasn’t afraid to play rough, get dirty and scrape her knees if it meant having a good time. She was game for just about any adventure and wasn’t afraid to try new things. While she never had the chance to grow up and follow her dreams, I hope you will always follow yours. I want you to know that whatever life throws your way, you will always have all the strength and courage you need to follow your heart and reach for your dreams…even if you get a few scraped knees on the way.
Margareta also danced to her own beat. She wasn’t one to conform to what she was “supposed to be” based on society’s rules, and used her creativity and talents to explore life from new perspectives and we encouraged her to do so. She was quiet and observant when she wanted to learn, and she was loud and outspoken when she wanted to lead. She seemed to understand life is a continual balance of opposing forces and seemed to have had the wisdom of someone who had learned the lessons of a lifetime. I hope that you keep your heart and mind open to all of life’s possibilities and ideas. The love of learning and ability to look at problems from a new perspective can only improve your experience.
There are many more things I could tell you about Margareta, and I’ll always be happy to tell more stories or answer any questions you may have. I would love to think that in some way she helps inspire you to fully embrace this gift and the life you have and to live without regret. My hope for you is that you live a life filled with gratitude, compassion, kindness, and happiness. I wish you the wisdom to recognize that relationships with those you love matter more than anything else, and that you always take advantage of the opportunities to let them know how much you care.
I encourage you to always listen to your heart, and know that a vibrant, beautiful soul once shared a part of it.
Wishing you a long, healthy life,
Maria (Margareta’s mother)