The Ultimate Gift

The Ultimate Gift

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When our daughter died, there was no warning or opportunity to say goodbye. In a matter of hours on a Wednesday afternoon in September, we were completely and utterly devastated. Actually, there are no words that can adequately describe how the horror of that day felt.

After a long, sleepless night, the next morning we oscillated between crying hysterically and sitting quietly in disbelief. We just wanted the nightmare to end and find our daughter still alive. But of course, it didn’t and the phone started ringing as the news of her death began to spread.

One was a call from an organ donation organization. My husband handed me the phone and said whatever my decision was, he was okay with it. At the time of the call, I had been in the state of quiet disbelief. And this call was all too real.

The woman started off by saying how sorry she was that our daughter had died, and then asked if we would consider donating her heart valves and corneas.

My first question was whether this decision could wait. If I still couldn’t really comprehend what had happened the day before, how could I make a decision like this? She said unfortunately no, it could not wait. If we were to agree to the donation, the procedure to remove them from her body would have to be performed that day or the next — as soon as the autopsy was finished.

Ever since I had understood what being an organ donor meant, I had decided to be one. My driver’s license has always had the donor sticker on it. But choosing for yourself is an entirely different matter than choosing for someone else. Especially someone who was not supposed to die. Someone who was supposed to outlive me by half a lifetime.

Ultimately, I decided to allow the donations. If anyone had a chance to benefit from my daughter’s death, I’d rather it be this way.

The woman on the other end of the phone led me through a series of questions she was obligated to ask. Though most of them were written for adults rather than a four-year-old girl. At the end of the questions, she asked if we would like to be notified if my daughter’s heart valves or corneas were used. I said yes, absolutely. Then I asked how much time they had to use them. She said the corneas would have to be transplanted within a few weeks, but the heart valves could be frozen for up to two years.

Over the next few years, we got occasional mail from the organ tissue donation organization. The mailings ranged from information on how to cope with grief to heartfelt hand written notes on her birthday and anniversary. They were greatly appreciated.

And yet, there was never any word that anything had been transplanted.

At the second anniversary of her death we got a written notice that we would no longer receive the letters and cards. But it said if we needed any support we could always reach out to them. A few weeks later, I decided to call the woman, Maggie, who had written the birthday and anniversary notes just to ask one last time whether anything had been used. It was now the end of the two years of viability of her heart valves. In the conversation, Maggie informed me that heart valves could be frozen up to five years (not two). She said she would research our daughter’s records and get back to me.

A few weeks later — shortly before Thanksgiving — I got a call back from Maggie. She informed me that one of our daughter’s heart valves had been sent to a recipient, but there was no record of it being used. She said the fit has to be exact, so sometimes they are requested but not used.

Maggie then told me that one of her heart valves had, in fact, been transplanted into a 6-month old boy in California, our home state.

My eyes filled with tears. I choked up as I asked if the transplant had been successful and if the little baby had lived? Was there any way to find out who the family was? She said unfortunately we could not get the information due to privacy rules. If the family of the baby boy wanted to reach out to the donor family, they could, but it didn’t work the other way. I thanked her and hung up the phone in disbelief.

I’ll probably never know who this little boy is or whether he survived. But I am filled with gratitude that our daughter was able to give someone else the ultimate gift: a second chance at life. I choose to believe this beautiful little boy will live a long, strong, and healthy life. And I choose to believe he will live it with a deep appreciation of life, love, and the kindness of strangers. I know our daughter would have wanted it that way.

A New “Normal” After My Child’s Death

A New “Normal” After My Child’s Death

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What exactly is “normal” after a child’s death? Our daughter, Margareta, died suddenly a month after her fourth birthday in September 2009. On that day, in those moments, the world as I knew it shattered. Years later, I am still learning how to pick up the pieces.

I live my life as “normal” as I can. My activities as a busy mom of four active boys haven’t changed (chef, chauffeur, drill sergeant, nurse, circus ringleader, etc.). I love my family and still experience genuine joy and happiness.

But lurking below the surface is a pain and longing so deep and profound that it defies description.

The activities of everyday life usually keep these intense feelings of grief at bay. But in the quiet moments, or if something triggers me, emotions can suddenly overwhelm me like a sneaker wave on an otherwise calm day at the beach.

It can cause me to cry for no reason. Or sap my energy completely. It can rob me of any ounce of patience for seemingly “trivial” matters, and cause my brain to short-circuit and become forgetful. Sometimes it can make me feel like I’m going crazy. The list goes on. Holidays and celebrations involving family and children continue to be significant triggers for me.

My new “normal” includes regular trips to the cemetery. My new normal means having to think about how to answer the question “how many children do you have?” based on if I’m ever going to see this person again. Or cringing every time I hear, “Are you going to try for a girl?” when someone sees me with all my boys. It means looking longingly at girls in the park that are about the age Margareta would be and wondering what she would be like now?

The new normal means learning how to live with a pain that will never completely go away, but will soften over time.

Time alone will not heal this wound. Unlike the early days of grief, it might be feasible to stuff these feelings down inside and actively keep them at bay. But the longer I push the feelings away, the worse they get. Instead, I choose to acknowledge them and figure out how to accept them as part of my life as it currently is.

I seek out support from various resources on a regular basis, which helps, but it is still a slow healing process. One of the greatest sources of working through my grief is talking about it. I also love talking about my daughter, Margareta. Sharing stories about her — and all my kids for that matter — is one sure fire way to bring a smile to my face.

“Moving On” After the Death of a Child

“Moving On” After the Death of a Child

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We moved to a new house. A house my daughter never lived in, and never will. We left an old house where she lived her entire four short years. A house where she spent countless hours playing, eating, sleeping, dressing up, making mischief, making us laugh…the list goes on.

It was also the house where she died.

It was the house seared in our memories on that horrible day when our lives changed forever. A day we wish we could just figure out how to undo. As I prepared to move, I had to face a lot of memories and choices.

For three years after her death I kept everything my daughter had touched, wore, made, or played with. Some items were kept in bins kept under my bed or in closets. Others were displayed prominently. Some were just left as they were before she died.

As I packed, I was faced with the question of what to do with her things?

Do I keep her things until I’m dead and then let my other kids deal with the question of what to do? Do I get rid of all of it, knowing that these are just things and none of it will bring her back? 

The truth is, they are just things — but they are things that can have significant memories attached to them.

Some of her things have more significance than others. For example, a pair of plain pants she wore a handful of times are just pants. But the dresses or shirts she loved and wore over and over are special. So are the clothes that have very specific memories attached to them or are featured in treasured photographs. The toys she barely played with are just toys, but the toys and books and puzzles that occupied her for hours day after day are ones that meant something to her, and mean something to me as well.

So I came to terms with the reality of keeping what still held precious memories for me, and donating the rest.

Packing the house also brought with it a mix of anticipation and anxiety.

I didn’t know what “new” things of hers I would come across as I pulled out neglected boxes or cleaned out long forgotten drawers. Would finding these things bring floods of emotion and make me cry? Or would finding something new that she created — such as a drawing — lead me to a new treasure that I can cherish forever?

Finding hair from her first haircut took my breath away and turned my stomach into knots. How could I have been so careless as to keep it in a random place where it could have easily been thrown away? Finding her faded, broken sunglasses in the yard brought back memories of her wearing them upside-down and a cute photograph of us together. I kept the hair, of course, but in the end let go of the broken sunglasses. My memories are enough.

Moving to a new house was a lot of work. Do I miss the old house? No. Will I keep the memories? Yes. We may have “moved on” without our daughter, but we will never move on from our memories of her.