The Ache of Losing a Child

The Ache of Losing a Child

Last week was the (would have been) 11th birthday of my daughter. In a few weeks, it will be the 7th anniversary of her death.

That leaves four years. Four short years we had with her that were simply not enough.

To be sure, I am grateful for those four years.

I know people who were never able to conceive after years of trying. I’ve seen the heartache of those who suffered miscarriages or whose babies were stillborn. I have sat witness to the stories of those who only got to experience a few hours or days with their babies. Or those whose child never lived to see their first birthday.

I’ve also grieved next to those who had more than four years with their children before the unthinkable happened.

No matter the age or circumstance when our children died, we are all left with the same deep ache that will never go away.

Our children are a part of us. They are the embodiment of our greatest achievement and our deepest vulnerabilities. It is a bond that can never be broken. Not even by death. But they did die. And when they died, they took a part of us we can never get back. And it hurts like hell. 

The pain is unbearable and unrelenting at first. But over time the stabbing pain transforms into a duller ache. We learn to adapt to a life with that ache. With some work and determination, we can re-learn meaning, purpose, and joy. We can once again embrace the sweetness life has to offer if we know where to look.

But that ache forever remains.

When life shuts a door, another one opens. We’ve heard that saying time and again. And the death of a child is like a door forever stuck shut. We desperately try to peer through the keyhole to glimpse what once was. But that keyhole becomes more obstructed and harder to see through with the passage of time. We ache for the chance to open that door once again; knowing full well we can’t.

No matter how many new doors we open and travel through; no matter how wonderful it may be on the other side of these new doors; a part of us will always cling to that one door. We desperately try to peer through that keyhole while remembering the profound love that resided within it.

I am happy with where my life is heading. I’m proud of what I’ve accomplished. I’m grateful for the joy and love that fills me. I treasure my family.

But that ache is still there. Every moment of every day.

For the rest of my life, I’ll keep looking through that keyhole. I’ll do it to remember all of the joy and profound love she brought me in those four short years. And yet…I’ll keep opening new doors to see where life takes me. She would have wanted it that way.

To the Boy Who Has My Daughter’s Heart

To the Boy Who Has My Daughter’s Heart

The day after my four-year-old daughter died 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. During the call, I asked to be notified if and when any were used.

We hoped her donation would help give another child a second chance at life.

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. I wanted confirmation that there was no longer any chance her heart valves would be used. That way I could stop wondering about it. This was a week or so before Thanksgiving in 2011.

The day before Thanksgiving, I received a call from Maggie, who was in charge of donor relations. 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 six-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. I’m quite certain that this boy and his family are thankful every day for this gift of a second chance at life.

I’d like to tell him a little bit about the girl who literally gave a piece of her heart to him.

Hello,

We don’t know each other, but our lives are now forever intertwined. When you were six months old, you received one of our daughter’s heart valves. I can only imagine it 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. Her creativity and talents led her 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. There was a wisdom in her 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 those you love 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)

Gifts From My Daughter on Her Birthday

Gifts From My Daughter on Her Birthday

Today is my daughter’s birthday.

If she were still alive, Margareta would have been 10-years-old. This is the sixth bittersweet celebration of a life that was over after four short years. Four years of blissful ignorance of the impending tragedy that took her life. Our hearts will ache because she is not physically here with us to blow out the candles on her cake. But today, we choose to remember all the love she brought into our lives during those four short years. We will celebrate her continued daily presence in our hearts and minds.

I can no longer buy presents for my daughter on her birthday. Instead, I’d like to share with you a few of the gifts she has given me. Not hand-written cards or tokens of her love during those four years, but gifts of wisdom she has brought into my life.

The gift of acceptance.

Most of my life, I struggled to try to change things that were not mine to change. I tried changing others. Their behaviors, their thoughts, and their reactions. Only to be disappointed every time. I tried changing the past by rewriting it in my head. I tried changing a future that hadn’t occurred yet.

Basically, if it didn’t bring me a sense of security…I tried changing it.

Margareta’s death helped me truly understand that most of what happens to us in this life is not ours to control. Only when we accept what we cannot change (and what is not our part of our responsibility anyway) can we find happiness and contentment.

The gift of appreciation.

I used to think I was an appreciative person. But then I lost one of the most important people in my life and realized just how unappreciative I had been. I understand now that embracing the little things we usually take for granted makes all the difference in the world.

Savoring that kind word or hug a little longer. Noticing a smile on a stranger’s face. Knowing that every day could be our last makes it that much more meaningful and important. I now better appreciate what I have versus always wanting something else; something more. This level of appreciation brings with it a sense of inner peace I always craved but never knew how to achieve.

The gift of courage.

For the longest time, I never felt strong. I didn’t feel strong enough to stand up for myself or leave toxic situations and relationships. I felt I was a victim and learned to play that role really well.

But when the worst actually happens to you – and you survive it – you discover a source of strength within you that you never knew existed.

In my journey of grief, I have begun to discover my courage. Courage to believe my needs matter just as much as anyone else’s. Courage to try to always speak my mind even if I fear the reaction it may cause. Most of all, the courage to learn accept myself for who I am instead of trying to become the person I thought others wanted me to be. I’ll never be perfect. I’ll always be a work in progress. But my daughter’s life – and death – has taught me that life is too short to try to be anything other than who you are at this moment. It has given me the freedom and courage to do what it takes to follow my dreams.

While my dream of watching my beautiful daughter grow will never come true, I will continue to create new dreams that are inspired by all the gifts she has given me.

Happy birthday, sweet girl. Words cannot convey how much we miss you.

Do They Even Remember Your Name?

Do They Even Remember Your Name?

Margareta.

For the four short years you were in our lives, your name was spoken more times than I could ever possibly count.

Not just by me, your dad and brothers, but by a multitude of family and friends. We spoke it, sang it, and wrote it every day. You corrected people on the pronunciation of your name by emphasizing every syllable. “My name is Mar-Gar-Eh-Tah.” Your name was part of the daily fabric of our lives. And we took it for granted that it always would be.

And then one day…it wasn’t.

On the day you died, a wave of shock and despair hit everyone who knew you. It took our breath away and left us speechless. Nobody seemed to know the right words to say to make sense of this sudden tragedy. But they tried their best to offer us comfort. They showed their support in condolence calls and cards.

Many quoted the bible, and offered us sayings they thought would soothe our broken hearts.

“God needed an angel.”

“She’s at peace in the arms of Jesus.”

Others just spoke their hearts in the simplest way possible.

“I’m so sorry for your loss. I don’t know what to say.”

“I can’t believe she’s dead. I feel sick.”

No matter the words spoken and whether they resonated with me or not, I felt supported. I felt our family wasn’t alone in our horror.

But then the funeral was over and everyone went home to resume their lives. The cards stopped coming. The phone stopped ringing. And yet our grief was just beginning. It didn’t end the day we buried you. It grew.

How could we go back to living our normal lives if you weren’t here to live it with us? And how could the earth keep spinning? How could people keep going about their daily business – laughing and happy – when everything in our life had been ruined? The feeling was maddening.

Occasionally we would get a call to see how we were doing. But it was never about you.

It was always about their concern for us and how they could help support us. They didn’t mention your name. While I was filled with gratitude to know that people still cared, all I wanted to do was talk about you and how your absence in our life was suffocating.

Over time the calls of concern stopped coming and were replaced by invitations to get back to our previous routines. We were invited to parties, dinners, outings, etc. We were encouraged to get back to the land of the living. At first, we often declined, but the invitations kept coming. And your name was virtually never mentioned.

Years after your death, your name is rarely said. Virtually the only way I can still hear your beautiful name – Margareta – is if I say it. I have to bring you up in conversation.

It makes me wonder whether people still think of you. It makes me fear that you are already forgotten.

After all, you were only here for four short years.

I’m not the only one who feels this way. This is a common topic – and source of despair – at grief support groups. Those who are bereaved live in a world where those we love remain at the forefront of our thoughts. This isn’t just in the first few months or years after your death. It is for the rest of our lives.

We may even get chastised from family and friends who want us to get over your death and get back to being the way we were before you died. Like that will ever happen.

I’ve heard many times a few theories of why people never say your name.

First, they think it will remind me of the pain of your death. As if that pain has ever gone away. If they only knew that hearing your name eases the pain…even if just for a brief moment.

Second, they don’t know the “right” words to say. I suppose it is a twisted interpretation of the phrase, “If you don’t have something nice to say don’t say anything at all.” To which I reply, even if they say something that doesn’t come out quite right, at least they’ve shown me that you’re still on their mind.

One of the greatest gifts someone can give to me is the act of saying your name.

Not waiting until I bring you up in conversation. Or only mentioning you on your birthday or the anniversary of your death. But any time they happen to think of you . Even if just for a brief second. I’d love to know that outside of our immediate family, we’re not the only ones who still think of you, love you, and acknowledge that you existed.

Margareta. How I love hearing your name.

A Letter to My Living Children for Mother’s Day

A Letter to My Living Children for Mother’s Day

Dearest ones,

Mother’s Day is quickly approaching. Each year, I’ve received beautiful hand drawn cards or beautiful crafts from you that I cherish and save. Your words of love and appreciation are an echo of the profound love and appreciation I feel for each of you. Not just on Mother’s Day, but every day. And yet, you know Mother’s Day will forever more be bittersweet for me. Bittersweet because your sister will never again be alongside you to wish me a happy Mother’s Day.

It has been a very challenging road for all of us since the death of your only sister.

You didn’t just lose your only sister and a piece of your innocence that day. You also lost the mother you once knew. After that horrible day, you had to witness a mother who was crushed by the weight of grief. A mother who still loved and took care of you, but was so often sad or tired or visibly overwhelmed.

I know for a long time you tried to hide your own pain from me in an effort to not make mine worse. You tried to take care of me, as I often struggled to find the energy needed to take care of you. I saw you help out more. You followed the rules as best you could. And you checked in on me as a parent checks in on their child. I appreciate all of it more than you know. But I’ll always be sorry you found yourself in that difficult position.

Seeing all my outward sadness since her death, it might appear to you that I think more about your sister than I do of you.

It may even appear that I love your sister more than you. Nothing could be further from the truth. But I’m pretty sure you already know that. I hope you understand that when all we have left of someone is our memories, we may choose to spend more time with our thoughts than before.

You hopefully know just how much I am grateful for each and every day that I have to spend with you. I have tried very hard over the years to show that to you. And despite the pain – or perhaps because of the pain – we have grown a stronger, deeper bond of love and trust between us. We have all witnessed firsthand the fragility of life, and we are reminded that our relationships with each other – and those we love – are what matter most. That is a wonderful gift your sister bestowed upon us that I know will last our lifetimes.

So if I have tears in my eyes this Mother’s Day, I hope you know it is just the overflowing love I feel for all of you – including your sister – leaking out of me.

And while I wish with all my broken heart that she was here with you, it is all of you that help mend that heart each and every day with all the love you continue to give to me. I can only hope you will also feel my love for you each and every day of your lives.

Love,
Mom

Us vs. Them

Us vs. Them

Humans seem to love groups. There must be something primal about wanting to find similarities we share with others. Is it because we want to feel like we belong somewhere? Maybe it makes us feel safe?

Whatever the reason, it creates a sense of “us vs. them.”

Having an “us vs. them” mentality can be both good and bad. Good when it creates a bonding experience and develops closer, stronger relationships for those within the group. Bad when it promotes discrimination or exclusionary practices. Some of the time, we have the opportunity to choose what groups to associate with. We can also usually decide to leave those groups when they no longer fit us.

Sometimes though, belonging to a group that separates “us vs. them” is not chosen, but forced upon us due to circumstance.
And there are some circumstances that simply cannot be undone. In those cases, we are subjected to an “us vs. them” reality that we cannot escape from.

In my case, and for many others, the death of my child was the circumstance that forever trapped me in an “us vs. them” world I wish I wasn’t a part of.

For the majority of my life, I was in the “them” world. Blissfully ignorant of the depths of pain the death of a child brings. Not to say my life was always easy and problem free – far from it. But the balance of nature was still intact. I was happily raising four children, and motherhood was the greatest source of joy in my life.

When my 4-year-old daughter died in 2009, I was suddenly thrown out of the world I once knew. My husband and I were now trapped in a group of two: the parents of our dead daughter, Margareta.

Now, I’ve heard many people hear of my circumstance and tell me, “I can imagine how horrible losing a child must be.” And they’re right…they can imagine.

But imagination is very different from experience. Imagination is safe. It has limits. You can leave it whenever you want.

Actual experience is not so fleeting or forgiving. Once you have experienced a horror so deep and so primal, there is no escaping it. Ever. You may be able to lessen the pain, but you can never make it fully go away. It becomes your constant companion.

Let’s look at another example. We hear stories of soldiers wounded, maimed, and killed on a regular basis. So regular, unfortunately, we’ve become numb to the horror of it. I can imagine what it must be like. I have a huge source of movies, documentaries, and news stories that depict these horrors in great detail.

But until I am actually in the position of fighting for my life, looking down the barrel of a rifle, making the decision to kill or be killed, riding in a vehicle with the unimaginable fear of whether it will run over an IED and be blown up, or seeing my friends and fellow soldiers die next to me…I will never really know what it is like to be in their situation. The same can be said for losing a child.

Once you find yourself in this “us vs. them” world, many are compelled to seek out others in the “us” category.

We want to know others who have actually lived to survive this unbearable pain. We want to be able to share our fears and feelings with someone who has had the same experiences as us. It doesn’t necessarily matter that their child died at a different age or in a different circumstance. It makes us feel less alone; less alienated from a world we once lived in but no longer belong to.

I’ve seen many of “us” knowingly push ourselves further away from “them” because of the hurt, frustration and anger “they” can unknowingly cause us. Having only imagination as their resource, “they” can say things they think are helpful and supportive. But are received by “us” as hurtful and insensitive. “They” often want to see us integrated back into the world we once knew. To get back to being the person we once were. But we see this as further proof that they simply cannot understand what it is like to be “us”. It makes us feel further isolated and alone.

While it might be tempting to stay completely isolated and alone and have no further contact with “them”, it is completely unrealistic and unhealthy. So where can we once again find common ground between “us vs. them”?

First, we can practice patience and compassion. I know this is easier said than done when you feel you are being crushed by the overwhelming weight of grief. But you need to remember that we were once “them”.

Once upon a time, we didn’t know the right words to say and probably said many insensitive things unintentionally. We didn’t always know how to act around someone whose overwhelming pain made us nervous and uncomfortable. Our actions probably made them think we were indifferent to their pain, despite our best efforts.

Once you’ve remembered that we were once “them” and how it felt, you can educate those around you on ways they can better support you.

If they don’t know what to say or how to act, then teach them. Let them know when their words hurt (and why) and what you’d rather hear instead. Tell them what they can do for you to help lighten your load. For their sake, be as specific as you can. Remember that many of these people love and care for you, and are likely to appreciate the opportunity to better support you and be open to taking direction from you.

If, for some reason, some of them are not receptive to feedback and remain unhelpful and hurtful, then you have the right to distance yourself from them. Remember that you are in survival mode, and it likely takes every ounce of your energy just to make it through each day in one piece. Your focus – whether they like it or not – will likely need to be on you, your health and well-being for now. Further down the road, and once you are better able to handle your new reality, you can revisit your relationship with them. It’s never too late to try to heal broken relationships.

Ultimately, life will always be some level of “us vs. them”. The best we can do is look for ways to balance the need to find others like “us” while finding compassion and common ground with “them”.

The more love and support we can welcome into our lives – whether it comes from us or them – the further down the path of healing we will travel.