Posts tagged “grieving”.


I wrote this entry back in March and for whatever reason, never uploaded it. Probably too busy with work! So much has changed since then, but rather than rewrite this, I’ll just let it stand on its own, representing the person I was four months ago …

It has been a long seven months since I wrote last. Returning to work was hard. Welcome in some ways – work provided order to the emotional chaos of grieving – but also very draining. For about 12 hours every day, I live, eat and breathe the fight against cancer. It is good and meaningful work but it is not a small job.

I must rigorously follow the news, keep up on the latest trends in communication, and not just be aware of, but understand and be articulate on the latest cancer developments and how they shape our work. To do all of this, I lead a team of 14 professionals who crank out a lot of work with very few resources. (And, by the way, that 14 is down from 26, two years ago, thank you very much, Great Recession.)

I say all of this not to complain or even position my situation as any better or worse than anyone else’s but to put some context around the fact that success in this position is an all-or-nothing scenario. And sometimes I can’t give my all. On a typical day, I give it my almost-all, then go home and give everything that’s left to Nora and Henry. Then I put my head under my pillow (sometimes literally) and try to recharge for tomorrow. (This post can serve as an open apology to Steve, who really gets nothing from me Monday to Friday.)

But the hardest part of working is not the work. Because I love my job. It’s exactly what I want to do. I love leading my team and contributing to the leadership of an organization that I can still say, after almost seven years, I really believe in. No, the hardest part of working is not the work and the stress and the pressure. The hardest part of working is the physical separation from the people who are the center of my world.

Now, every minute we spend together is far from pure bliss. (I mean, last Saturday Henry had a temper tantrum through a megaphone. Literally. It was one of those days that I understood how hard it is to be our neighbors.) But when such an epic loss strikes a family, the interconnectedness of each to the other is magnified. The loss of Anna was quickly multiplied by how many other losses there could be. What if I lost Nora … Henry … Steve. And now I know that this is the greatest risk to sanity: standing on the edge of the chasm of great loss, and knowing there will be more.

I followed this line of thinking one day: when can I let go of the gripping fear of losing another child? I must get past the fragility of infancy. Genetics, disease, infection. I must get them through the accident-prone toddler years. Choking, drowning, poisoning. I must protect their childhoods. Predators, allergies, accidents. Then I will navigate them through the bold teenage years. Alcohol, drugs, driving.

And then, after all that, is there a sigh of relief? No. There is still irrational risk-taking, random sickness and disease, tragic accidents, heinous crimes. For a parent, there is no finish line. There is no time when losing a child is bearable. Not at three months, not at three years, not at three decades.

There is no end until my own end. I am certain that I would not survive another devastating loss. And yet I cannot live waiting for my own death. So the only answer is to let … it … go.

Here is the giant truth: Any of us could die at any moment. And there is nothing anyone can do about it. So, we just have to let it go. Ignore the specter of death lurking behind every corner. Forcibly return to ignorance. Forget.

When I went back to work, only six weeks after losing Anna, I had not yet forgotten. Leaving every day, there was part of me that was sure I would never see any of them again. At first it was really intolerable. As the weeks and months passed, it got better. The forcible forgetting was helping. The acceptance of complete and utter lack of control was kicking in. But there were days that brought it all back full force.

In January, Steve and I went to Paris for a week. I almost had a nervous breakdown at the airport. Both ways. In February, my friend and colleague’s daughter got very sick and I was reminded that Anna’s death was not a one-time deal. Those I love, those I care for, those I don’t even know … we’re all living on the edge, a heartbeat away from tragedy. Just last week, Nora came home sick from school and I wasn’t there to pick her up, cool her fever, soothe her fears. I was working. I tried to keep the specter at bay and finish the work at hand, but eventually I all but ran out of there, and got home to hold my sweet, sick girl.

I know there will continue to be days when this particular aspect to losing Anna – eating from the tree of knowledge and seeing death as the true yin to the yang of life – will again rear it’s ugly head. Perhaps it will get easier as I lean less on forcibly forgetting and more on embracing balance. I don’t know.

So tomorrow, it’s back to work another day. Back to the frenetic pace that forces forgetting. Back to workplace drama that is now completely off my arc of what constitutes emotional investment. I will do my best, give my almost-all, and hope that it will be enough.

Visceral reaction

This was written one sleepless night July 29, 2009 at 3:45 a.m., three days after Anna went to heaven. It has been edited to make a few parts make sense. Please note, this may be difficult to read. -Steve

I miss my baby.

Now I’m fine.

Now I look at her picture and I’m no longer fine. I get up and life seems ‘normal’ with the bustle of things to do. Shouldn’t I be changing a diaper? Who’s holding Anna? When will it be my turn to hold her. Monday I woke up to feed the cats and didn’t fall back to sleep. I was exhausted but the sleep didn’t come. I re-lived the events in the hospital. The terrible ones … not the peaceful beautiful ones. I remembered the chest compressions to keep Anna alive while they tried everything they could to help her. This lifesaving gesture, although necessary, is not the gentle bounce that would normally help her over any discomfort. I remember calling people to pray. To pray that my baby would return to my arms exactly as she was before. That she would sleep soundly on my chest … that I would say to her once again, “Let’s take a walk” … that we would walk around inside or out–despite the time of day–to calm her cries and help her find sleep.

All of the rules have changed. Last week I wondered if Anna would be teased in high school. Pondered whether or not she would have any delays … mental or physical. I wondered what our days would be like when Henry was in school. I thought about where I would take her in our time alone while Nora and Henry were at school. I considered whether or not she would like to play by herself while I took a call for work or if I would sit with her and play while on a conference call or would I need a sitter. I thought about things in the near future and in the far off future. I mused about details of her life that no-one could know. What type relationship would the three kids have? Who would be closer? The girls? One of the girls and Henry? Which one and why?

I wrote a letter to Nora when she was born. It took me months to get to it. I don’t know where it is right now but it’s somewhere. I didn’t ‘get to’ Henry’s letter yet. It’s started but it is more notes and ideas than a final draft. These letters are comments to an infant that I have just met but for whom I have so much to give. Perhaps it’s me projecting myself on them a bit. Maybe I’m trying so very hard not to expect them to be what I want them to be, but rather to simply give them the freedom to become who THEY are and want to be. It’s the dreams and aspirations that they have that I want to buttress and yet step back from and let them stand on their own. These things are what these letters are about. Now I am faced with another letter to write that I didn’t fit in. A letter that I know the end to. I read the last chapter. Now how can I start over and enjoy the book? I don’t want the last chapter to come. I want to bask in the glow of the incredible story. I want to drink in the delicious tale and savor it’s sweet relaxing taste. Yes, I know the ending but I want to forget it … until it’s time. There will be a time to remember the last chapter. Right now it is ever present in my mind.

With the exception of sleeping, my body works just fine. I can do everything that needs to get done for the funeral. I can work if I needed to or run errands or whatever. But every once and a while, the slightest thing will suddenly well up inside of me and bring me to tears in an instant. There is no warning, no formula. There is only tears. Drops of salt and water and an inability to speak for a moment or minutes or more. Sometimes fleeting and sometimes lasting but each time …. painful. Not bodily but somehow worse. There is no aspirin or ice pack or band aid that can help. Hopefully with time this will heal. I want it to stop.

I want my baby back. I would take her place. I would spare my family the pain that is losing a baby. A baby that has been here for such a short time that one might forget after the baby things are put away. One might forget if it was just ‘stuff’ that you didn’t need anymore. Yes, one might forget the stuff or the cries or maybe even some of the details but I won’t forget that little smile that would creep across her face to welcome us to the day. The occasional grip of my finger … even though she wasn’t into gripping. The quiet breathing as she slept on my chest … becoming one with me as I breathed with her. The quiet moments when I held her and she wasn’t doing anything but in that moment I knew that I loved this little, tiny bundle with all of my heart and soul. A connection that I suddenly “got” after having kids. I understand why parents are so crazy regarding their kids. You can’t quantify the immeasurable joy that children bring without “doing” anything. I’m sure psychologists have ideas as to why that is but there isn’t anything stronger than that connection. That need to be near, to touch, to help, to lift up, to protect, to sacrifice all things for this child that is part of you.

And then she was gone. And now what? I don’t know how to do this. I can’t find a website that has the answers for me. Everyone tells me that nothing can be said to help. “How are you doing?” “I’m so sorry.” “Let me know if there is anything I can do.” There aren’t words. There aren’t answers. Luckily, I know that my little angel, Anna is quietly resting in heaven. No, maybe not. She’s probably walking … or maybe even running. At the very least she is sitting up passing out smiles to anyone who wants one. She is making heaven a better place as she did here on earth. She’s happy. She’s filled with complete joy and peace. She might look down on us but it is through the veil of the blood of Jesus that takes all sin and sorrow away. She doesn’t see us mourning her death. She sees us living in remembrance of her just as we remember the life and resurrection of Jesus. She sees a celebration of her life. Memories of her smiles. Memories of how wonderful it was to hold her little frame. To support her head and body as she wasn’t quite strong enough to do it herself. She didn’t expect it of us but she really liked it. She would sleep in the crib for us but she’d rather stay in our arms. “Why don’t you just hold onto me a bit longer. I’ll go with you, Daddy. I’ll be good. Take me with you.”

I miss her so much. I miss that beautiful girl so very, very much. I want to take all of Jenn’s pain away. I would rather it crush me completely than to have it hurt even a little for Jenn, Nora or Henry. I will be strong for them. That might mean being strong enough to cry with them. Strong enough to hold them when it simply hurts all of us so much. Strong enough to laugh through life. To take all that good that Anna shared with us and channel it into being better. Better from the pain. Better for the world. To live and remember her without the pain … most of the time … and to focus on the amazing 80 long days that we enjoyed as a family of five. All together, everyday. To enjoy the photos of each and every day that capture the personality and charm of our little one and the memories they will share with anyone who will really listen to them.

These months later

by steve

Steel yourself. Easter’s here and you remember what happened at Christmas. Holidays are hard. That’s what they say. I have to be ready in case I don’t enjoy the bunnies and candy and egg dying as much. The resurrection might not be as glorious this year. The hymns less triumphant. Wait for it.


The Easter holiday wasn’t bad. It wasn’t that much worse because Anna wasn’t here. Maybe that’s not true as evidenced by the tears running down my face as as I type those words. Tears that make it hard to breathe and almost impossible to cry out loud. Maybe I didn’t miss her as much as I did at Christmas. Maybe I missed her in a different way. Maybe I didn’t miss her enough last weekend. Maybe it was ok to wait until a few days after the holiday to miss her this time. To break down and sob out loud while home alone. To cry in a way that affirms how much I do … these months later … miss that child. My child. OUR child. That precious, smiley bundle of love that I had already dreamed a life for.

Nora and Henry help every day. They are incredible children (and I am a proud father who, without any doing of my own, is so thankful for their incredible talents, personalities and the joy that they bring to me and the world.) They are a source of inspiration and joy that helps to fill the void that Anna’s life has left. To watch them grow and learn and smile and love and just be … to simply exist, satisfies and fulfills the soul. Concurrently there is a little pang of, “what if Anna …” It’s a quiet voice. A murmur that persists in a very subtle way … usually in the quiet times of life. My answer to that is simple: What if Anna had died in surgery or another way two weeks or two years or two decades later? What if there was blame to be laid that would drive apart our family instead of entwining our hearts and souls even more. There are many dark places that question could lead. What if? What if Anna was meant to be with us a little while. To encourage us and challenge us and help us to grow. To inspire us to be better and then, without suffering, to pass on to a perfect place. A place where we can look forward to being reunited with her.

The hundreds of bulbs that were planted last year the day Anna was interred were all just about to bloom with a few rouge daffodils opening just before Easter Sunday. The spring weather shining down–painting the “before” picture of a hundred flowers blooming … as Jenn planned … for Anna. Welcoming her memory to the season she was born into. This is Easter wasn’t so bad. Not because I’m pain free and “over it.” But because the resurrection, the triumph over the grave will allow me to someday join my Anna angel again. That’s what the words “He is risen!” meant to me this Easter.

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Deep in the night on Christmas eve

I had grand ideas to go back and organize my thoughts, notes and memories into blog entries that would be chronological with the intent to show any progression that might have been there. I’ve been meaning to upload something since February but haven’t gone back even to that point. Instead, I’ll simply publish them as I re-finish them. -steve



Twas the morning of Christmas and all through the house, not a creature was stirring but my iTunes and mouse. I wrote the following thoughts, blurred by tears, in the first hours of Christmas morning after attending and singing at the midnight mass. Finding the Christmas spirit and cheer was difficult our first Christmas after losing Anna.

Christmas wasn’t right this year. I couldn’t get into the mood or find that merry groove. Something weighed on me … especially today. “They” say that holidays are the hardest times but I was feeling good about Anna being in heaven, a better, perfect place. I thought I would be ok. Today I overreacted and yelled at Nora. I spoke harshly to some strangers who were talking during church. I didn’t want anything to do with the material side of christmas. Gifts were purchased and wrapped but without the joy of that Christmas should bring. Yes, I miss my baby and I found a little blackness in my heart. I can feel the tears inside me waiting for the right time to surface. I don’t like it but the time hasn’t been right to cry. I’m planning Anna’s concert or I have to sing soon or something. Music moves me more than anything … it always has. It could simply be an amazing moment singing a masterwork or being moved by a text, a performance or a memory. Music is powerful, delivering any emotion. More recently it could be “Abide with Me” or another hymn or anthem … especially those we sang at Anna’s funeral or interment that will suddenly close the throat and squeeze the tears suddenly and unexpectedly. We miss her. I miss her. And some music will always be, and others music will become, associated with her. 

_Jenns_childhood_angelWell, tonight I found Christmas in a song I had the privilege to sing at church. The church was packed and I was worried about my cold and the making sure I had the right notes and whatever. In the moments before I sang I decided to “just sing the song” … not focusing on vocal technique or “breathing in the right places.” So I sang it. And it went OK and I felt a peace come over me as we all shared that moment in the darkness of Christmas eve. And as I sang the refrain each time … Christmas finally came to me. Not in the form of MY child but as the child in Bethlehem. “Oh come let us adore Him.” I was so focused on my loss, on MY baby that I didn’t leave room in the inn for the baby in the manger, who came to redeem us all. That babe who was born only to die so that he could welcome our Anna to heaven, with the heavenly host–praising God with song. Oh come let us adore him. Just imagine that heavenly host appearing to the shepherds. Imagine them now … singing still … only now he’s not in swaddling clothes but instead triumphantly holding my Anna as they look down on our Christmas celebration. Oh Little Town of Bethlehem… Joy to the World … Hark the Herald Angels Sing … Oh Come Let Us Adore Him. Oh come let us adore him–Christ the Lord. It’s not the presents that make it Christmas it’s the chance at new birth. A time of new beginning as we remember a gift given that inspires us to decorate our homes, businesses and towns and to spread cheer with a smile or a gift.

Christmas to me is a tree with lights, the people that you love and some Christmas cheer shared with friends and strangers alike. Usually it only takes a few Christmas songs to fill me with Christmas cheer. This year it came quietly through a song deep in the night on Christmas eve.


Henry: Souvenirs

DSC03978 Henry Anna Crib sq />Souvenir: [soo-vuh-neer, soo-vuh-neer]

–noun 1. a usually small and relatively inexpensive article given, kept, or purchased as a reminder of a place visited, an occasion, etc.; memento.

Henry will not remember Anna. He was two years, 11 months and ten days when she died. The best I can hope for is that there will be so many pictures of Anna and she will be so much a part of our family lexicon that he will feel like he remembers her.

I have some early childhood memories that I do not know if I really remember or if the “memory” is because of a photo. We have a picture of every day of Anna’s life. Dozens of Henry and Anna together. Perhaps the pictures will knit together memories for Henry.

My earliest memory is of trauma. I was at my babysitter’s house and my brother, Scott, and I were racing to the rec room. I distinctly remember running around the corner into the kitchen, then around the corner again to the basement stairs. I was laughing the unique shriek/chortle of a child being chased. Scary! Fun!_I have her mama sq

Then I remember sitting on the blue-green basement carpeting, wailing. I had fallen down the stairs and hit my forehead on the corner of a stone mantle.

Next I remember sitting in the babysitter’s kitchen. She offered me grape Kool-Aid. I remember thinking: This is way too serious for grape Kool-Aid.

I ended up with some seriously sloppy stitches on my right temple, and a lollipop that had a plastic owl in the middle.

Here’s the crazy part: I was two. But I still remember it so clearly.

Maybe this distinct trauma, this epic loss, will crystallize Henry’s memory of Anna. The little sister he liked to hold. Who he called “gorgi” and “little girl.” Maybe he will remember always tipping his head so it touched hers and closing his eyes. The way he kissed her feet. How he stood on the pink step stool to help change her diapers and get her dressed.

If anything, he will probably remember her funeral. The crying of those he loves and rarely sees in that state. Mommy. Daddy. Nora. (OK, he does see Nora cry quite a bit.) The strange places: funeral home, cemetery, crematory, columbarium … the strange activities: wake, funeral, interment.0520091020 Henry Anna Kiss sq

Maybe, he will remember family camp, just two-and-half weeks after we lost her. Maybe he will remember her interment and tree-planting, on October 10. Maybe he will remember hanging angels on her blue spruce on (what would have been) her six-month birthday. And we will keep remembering her – formally and informally – so that at the very least Henry will have remembrances of Anna. His whole life, he will remember remembering her.

In French, the word for “to remember” is “se souvenir.” That’s the origin of the English word souvenir – a reminder, a keepsake, a token. Throughout Henry’s life, we will give him souvenirs of Anna; tangible ones like his Anna Bear, who hold a heart with a picture of Anna, and intangible ones, like celebrating her birthday and reminding him that he is a big brother.

Henry will probably never know, until he is old enough to read this himself, how he saves me from the brink of grief every day. How his warm, open, loving nature – how he likes to cuddle and hold hands – fits perfectly inside my grief.0522091136 Henry Anna Point sq He truly knows when to crawl into my lap, when to climb into my bed. He innately understands that comfort is not just emotional, it’s physical.

One morning the week before last, it was rainy and dark. With the shades drawn and no sunshine, Henry must have thought it was very early or still night time. He sleepily walked out of his room with his nonnie (pacifier), bee (blankie), and Twilight Turtle. When he saw me getting ready for work he started crying.

Henry: But I wanted to get into family bed wif you!

Mommy: Go cuddle into my bed, you can watch a show.

Henry: Noo wif you!

So I put my pajamas back on, knowing I would be late to work, and cuddled with my boy in our cozy family bed. And it was good. And it helped … me.

Earlier that week, it was All Saints’ Day. I was not prepared. I went into church late because Henry did not want to leave me and it so it took some convincing to get him to stay in Sunday school. I slipped into the pew next to Steve and opened the bulletin. Right, All Saints’ Day. Right … they’re going to read Anna’s name. Right … the hymns are all sad.

Just as the grief was beginning to overflow, I felt a warm hand on my leg. I turned to see Henry’s sad little face. He did not make it through Sunday school. It was as if our little guardian angel hustled him out of there and into my arms, just at the moment I needed him. I sat down and held him, and he held me, for a long time. And it helped … me.

DSC02680 Henry Anna HeadsHenry still does not fully comprehend what happened to Anna. I still think that if we brought her in the door today (oh that we could!), it would take a day or two, and then for Henry it would be like she was never gone.

But though he does not fully understand her loss, Henry is critical to our family’s healing. We will help him remember … he will help us heal.

Nous nous souvenons.











Anna was 9 pounds 0.6 ounces when she was born. 18.5 inches long. She was in the 90th percentile for weight, 25th for height. She has one sister, one brother, six grandparents, four godparents, seven uncles, five aunts and four cousins. She got 1 ml of propranolol every six hours. She spent 80 beautiful days with us. She was 11.5 weeks old when we lost her. Today, she would have been 171 days old … almost six months. She has two parents who will never, ever forget her.

There are a lot of numbers that I know about Anna. But ultimately, the number that I can’t get away from is three.

“How many children do you have?”

Several people who had also lost children told me this would be a difficult question to answer throughout my life. So I thought about it in advance. How would I answer? I told myself I would always answer “three: two on earth, one in heaven.” I coached Henry to always answer that he has two sisters, one on earth, one in heaven. And for Nora, one brother on earth, one sister in heaven. I even practice with Henry: “Henry, do you have a big sister?” “Yes. Nora!” “Do you have a little sister?” “Yes. Anna!”

But like most things related to loss of this magnitude, it is not always that easy. Here’s the part I didn’t anticipate: If someone is asking me how many children I have, he or she probably doesn’t know me that well. Probably, we have just met. Likely, I’m at work. So … do I go from small talk right into the depth of my most agonizing pain?

It is like going straight from the handshake, not letting go and pulling that person off the bridge with me. It doesn’t seem fair. But not talking about Anna – lying and saying two – that is not fair to Anna. And it feels so wrong.

Let me give you an example of how this goes. I was at a work function a few weeks ago. The event was the culmination of a relationship I had been working on before I went out on maternity leave. The guests of honor were Mickey Mantle’s two surviving sons, David and Danny. I worked most closely with their lawyer but had been on calls with the Mantles a few times.

I walked over and introduced myself to David. I said, “It was so nice to return from my leave and see that this event worked out so well.” David, “Maternity leave?” Me, “Yes.” David, “Well that’s just wonderful. A boy or a girl?” Me, “A girl.” “You must not be getting much sleep these days.” Me, “Well, uh, it’s kind of a sad story. We lost her.” And you can imagine how it went from there.

So … how to answer the question. How to honor Anna, be true to myself, but not jump off the bridge with complete strangers. I guess figuring it out has to do with the last part. Not jumping off the bridge. There is an immediate, biological and permanent, permanent  bond that forms between mother and baby — that formed between Anna and me. Death does not erase it. I don’t expect that I will ever be “over” losing my precious girl. But I am trying to absorb her life and her loss into who I am. Trying find strength from it. Some days I can, some I can’t. But I am trying. I am trying not to let her memories, her life pull me into a morass of pain but to lift me up. So …

“Three. Two on earth. One in heaven.”

And I’ll try to shake your hand … and just walk across the bridge.


Sweet Anna's final resting place

Sweet Anna's final resting place

Henry signs balloon as Nora looks on

Henry signs balloon as Nora looks on

We released the balloons with messages for Anna Maxine

We released the balloons with messages for Anna Maxine

A sad and happy day

A sad and happy day

Kids in the hole

Kids in the hole

The tree crew -- Dad, Luke, Steve, Gabe, Grant, Bryan & Chris

The tree crew -- Dad, Luke, Steve, Gabe, Grant, Bryan & Chris

Colorado Blue Spruce

Colorado Blue Spruce

Those we have held in our arms for a little while we hold in our hearts forever.

Those we have held in our arms for a little while we hold in our hearts forever.

There are holes in every language, when there is no single term that applies – sometimes for novel things: what is the sound a cell phone makes when a call is received? And the word “ringtone” is invented. But there are other things that have never been named. When language fails us in this way, it is called a lexical gap. Sometimes the lack of a word says more about our society than its presence. For instance, there is a word to describe a child who has lost her parents: orphan. The word for a remaining spouse is widow or widower. But there is no single word in English to describe a parent who has lost a child. A lexical gap.

My friend, Betty, is a counselor. In the course of her work she hears a lot of devastating things. Beautiful girls who cut themselves. Young boys in abusive homes. And so she can’t just pull up a chair at Starbucks and start talking about her day – not because she can’t bear the retelling but because we can’t bear hearing it. She protects us from a little bit of the horror of the world.

In the same way, people who have experienced devastating grief – I can only speak about losing a child – have to protect those around us. And that is probably the root of this particular lexical gap.

During Anna’s short life, she connected meaningfully with many people. In particular, our close group of friends who we see regularly. When we lost her, we were all – we are all – united in mourning. We all lost Anna.

But a parent’s grief is uniquely devastating. And while Steve and I cope and adapt and endure, the suffering is steady. It is too much to reveal to the world. Not because I cannot bear the sharing but because others don’t deserve to be exposed to that kind of pain. When I write and reread this, it sounds like I’m standing on a precipice. I’m not. I don’t mean to imply that this grief is completely debilitating.

It’s just that I can imagine that it could take over if I wasn’t forced to protect others. If I didn’t have to act normal sometimes – and therefore start to become normal – for Nora, for Henry, for my job … maybe I would never get there. By protecting others, I am, in a way, also protecting myself.

And so, this lexical gap in our language and this physical gap in our lives coincide. There is no word for a parent who has lost a child. There are no words to describe our grief. There is just … a gap.



Last Saturday, on October 10 at 10 a.m., we held Anna’s committal ceremony at Village Lutheran Church. Her body was cremated in August but it wasn’t until now that the mason could open the column where her remains would be placed and the brass plaque with her name was completed and delivered. It was a small and informal ceremony – we sang camp songs because I’m sure Anna would have loved camp – and then went back to our house, where we planted dozens of bulbs. More exciting, we planted a beautiful, eight-foot Colorado Blue Spruce. It looks like a Christmas tree in the corner of our yard. It is amazing. And the feat to plant it was Herculean.

Let me just say, Steve, Grant, Chris, Brian, Luke and Gabe, she really did look smaller on the lot among all of her tall friends. And although it gave me some pause when it took three men and a forklift to place it in our car, I thought, how heavy can it really be? So when Steve and I got it out of the van on our own, I was pretty sure the five of you would be able to carry it up the stairs and across the lawn without too much trouble. And, yes, I am sorry I didn’t think about covering the root ball with a tarp for the 12 straight hours of rain that preceded the big event – adding, conservatively, 100 pounds or so. I would also be remiss if I didn’t issue an open apology to VLC for bending the wheel of the dolly that was rated for 600 pounds. (Don’t worry, Steve already fixed it.)

But did I mention that the tree is beautiful? And that I love it? Because it is. And I do.

I Want to Talk About Anna

_about to laughI realize that no one knows what to say the first time they see me – whether back at work or since the funeral. It’s OK. There really is nothing to say. It’s OK to say, “How are you?” Even though we both know I’m not good. So, when you see me, you can say, “How are you?” And I’ll probably say, “As good as can be expected.” Or, “I’m alright.” Or, “I’m OK.” So there, we just had the conversation. That wasn’t so bad.

It’s also fine to get right to work. I understand that life has to go on, and that a lot of life went on while I was in deep grief that I have to catch up on. So, if we work together, it’s OK to say, “Did you finish your budget yet?” without saying anything else to reference Anna and our loss. I really do care about my job, about the work of fighting cancer, and I still think it is important work.

I am still me. Which is to say, I am still someone who cares about you. (That is, if I did care about you before. I’m also not a saint, so, if I did not care about you and your problems before, I probably still do not care about you and your problems.) But if I did care about you before, I still care about you and it is OK to talk about yourself, your life, your problems. You do not have to preface it with the disclaimer that you know your problems are not as bad as mine. Each of us puts our own life on the same spectrum. Your worst experience feels as bad to you as my worst experience feels to me. (Within reason, of course. If your worst experience has been, say, ruining your manicure, I think we can agree that I feel worse.) Until I lost Anna, the worst thing that happened to me – and it felt really, really painful at the time – was having a sick baby. If nothing worse ever happened to me, I would think that was really, really terrible … because it was. Just like your bad experience, bad day, bad relationship is really, really terrible for you. And I like you, so I want to help you, even just by listening.

Here’s the other thing, if you see me, please know that I want to talk about Anna. I think about her all the time. I remember when my friend Greg lost his mom that I really wanted to talk to him about her. I didn’t want to ignore his grief and pain, but I could not for the life of me think of how to bring her up, since I didn’t know her very well. I think others feel that way about me now. So here are some conversation starters, so we can talk about Anna:

  • “I thought of Anna the other day, and even though I never got to meet her, I felt so sorry that she’s gone.”
  • “One of my happiest Anna memories was when …”
  • “How was it … going back to work?” or “… putting her things away?” or “… having the holidays without her?” [Really, you’re not going to remind me of a sad time by bringing it up. Believe me, I remember it anyway. And I’d rather share my sadness – or my joy – rather than keep it to myself.]
  • “I wish Anna was here right now because …”
  • “Do you remember the day I met Anna?”
  • “What would you have dressed Anna up as for Halloween?”
  • “I wonder how Christmas (or camp, or vacation, or this party) would have been different with Anna here?”
  • “Nora is so cute. Do you think Anna would have grown up to look more like her or Henry?”
  • “I like seeing babies because they remind me of Anna.”
  • “Every time I see you I think about Anna. How are you doing?”
  • “I hope you got my card. I want you to know I really felt sorry for your loss.” [This is especially helpful – the “I hope you got my …” or “I hope you liked the …” statements. Because although I try to remember exactly who sent what, I do forget. And I really would like to thank you in person.]
  • “Anna would have been X months/years old today. I wonder what she would have been like. I think she would have been …”
  • “It has been X months/years since we lost Anna. It must still be so hard.”
  • “What are you thinking about?” [Clever! Because you know I’m thinking about Anna.]

Let me just say that all of this advice is directly pertinent to me. I have no idea if other people who are grieving feel the same way. My guess is that they probably want to talk about their loved one, too, but maybe these aren’t good questions for them. For me, it is almost impossible to say the wrong thing, as long as it is coming from the heart. If your goal is to comfort me, I appreciate the effort.

In the first week after we lost Anna, someone (maybe the funeral home?) gave us a photocopied sheet of inappropriate things people might say and suggested responses. I titled it the “How to Say Eff-Off Without Swearing” brochure. I threw away the document, but I remember one of the exchanges was something like this:

Inappropriate comment:  “I’m sorry you lost your baby but at least she’s in a better place now.”

Suggested response: “The best place for my baby is in my arms.”

Ouch. The person was just trying to make you feel better. They probably don’t deserve a zinger. And really, is there really any right thing to say? Believe me, there is certainly nothing you can say to make me feel better. Just having you in my life and knowing you care and are thinking about Anna too helps. Sometimes the most helpful thing is silence.

I try to do something specific to remember or honor Anna on the 8th and 26th of every month – the day we got her and the day we lost her. I am almost beyond thinking of her more consciously every Friday (hello) and every Sunday (good bye) – but that’s mostly because I can’t keep track of the days of the week. Feel free on those days just to say, “I’m thinking of Anna today, too.” It helps just to know we are not alone in all this.

We are planning Anna’s interment (when her ashes will be placed in the columbarium outside the church) for some time in October. We will have a simple service of prayer and remembering, and then go back to our house to plant spring bulbs (in my grief I bought 300!) so that the garden is alive with color on what would have been Anna’s one-year birthday. We may bless – or plant – her blue spruce that day, too. I’ll post the date when we figure it out. We’re just waiting for the plaque that will be placed on the outside of the columbarium to come in.

We also started a “I’m a Fan ‘a Anna” group on Facebook. Check it out – the only requirement to join is that you are inspired by Anna’s short, sweet life. And that girl was nothing if not inspiring. I sure do miss her.

Life After Anna

_wow_shes_cute_17squareIt has been thirty days since we lost Anna. Tomorrow, August 26, it will be one month. It is still hard to say — or write — “she died.” “We lost her” is all I can manage. How are we doing? I don’t know. When we are able to step outside ourselves for a moment, we can acknowledge that this tragedy has not only brought great pain, but also great love, great generosity, great faith. We have experienced the support of our friends, family and colleagues as we never imagined possible … and never imagined necessary.

The progression of our grief over the past thirty days has been momentous. In the first days, we were truly in a fog. The grief was debilitating. When we weren’t crying, we felt Anna’s absence emanating from every inch of the house. At one week, we went to Target. (We bought car seats for the kids, because amidst all the activity, they inadvertently got delivered to Goodwill.) At two weeks, my pain at having to suddenly stop nursing abated (although the milk is still not gone). At three weeks, we could sing again. Last Saturday, I dreamed about Anna for the first time. Steve was holding her and I kissed her. I awoke feeling peaceful. Yesterday, we went for a walk, our first without Anna. Still a family of five, but only four on earth.

There are times we can laugh. I have learned that laughter — true, unexpected laughter — feels like breathing in sunshine. Light, clean, beautiful. It probably always felt that way, but I only just noticed because it stands in such contrast to my prevailing emotions. There are times we can forget for a moment. Or, not really forget but rather place our sadness to the side … move around it. But it is always there. This is hiding-around-every-corner grief … punched-in-the-stomach grief. Losing Anna is physically painful. My heart literally aches. In the first weeks, for a just a millisecond before I could stop myself, my arms would tingle and I would feel an adrenaline rush thinking, “Oh no! Who has the baby?” Because as mothers we are biologically programmed to protect our children … and my circuits were misfiring.

The morning after we lost Anna I picked up a card we received when she was born. It related support for the tough time we were having with Anna’s health. And for a moment I thought to myself, “Why were we upset before? Why did people feel bad for us?” For that second, I honestly didn’t remember. Momentous loss instantly puts life in perspective. Instantly. But that reaction also was an indicator of how Anna had already changed us. She truly taught us to love without limitation. We were beyond the pain of any diagnosis she had received. We were ready to care for her for the rest of our lives if that was what she needed. We were getting her early intervention services and tackling her issues one by one. We loved Anna completely, completely as she was. And to lose her in that moment was — is — excruciating.

This experience has also fundamentally changed our outlook on life. I have lived my personal and professional life knowing there is a solution to every problem. Steve is the same way. Nothing was impossible. And now we are stuck in the middle of an agony we never could have imagined. And there is no solution. There is no way to get her back. There is no end to this suffering. Except to wait for it to abate. That’s the only hope we have. That this pain will subside. That bit by bit, normalcy will regain a foothold. But at the same time, we do not want to feel less pain at her loss. Though it is not the “right” response, part of me feels that Anna deserves our total devastation.

It’s hard for me to speak for him but I think Steve and I are about in the same place, which is to say we’re just stumbling through this darkness from moment to moment. He is strong, I am weak. I am strong, he is weak. Sometimes, we’re both a mess. And there are times when life almost seems normal for little while. An old friend wrote to us the other day to say that she is praying for us, and specifically praying for our marriage. I like that. Because while Steve and I are doing fine, I can see how either of us could easily become lost in our own grief. The anger and frustration at being caught in such despair could easily be misdirected at each other. I know I have been less patient, even though I try not to be. The kids end up on the receiving end of that, too. It’s hard. So we appreciate the prayers.

Nora and Henry are each handling Anna’s loss in their own way. Nora really absorbs the emotions of Steve and me. She cries when we cry and is sad when we are sad. But that’s not to deny her own experience. She misses Anna. The other night, I went into Nora’s room because she was crying. She asked me to tell her again who is in heaven with Anna. I told her about her great grandparents, the dogs I had growing up, my friend Angela’s kitty. Nora listened to all this and started crying again. “But now Anna won’t match.” I said, “You mean her healthy body in heaven won’t match the one she had here on earth?” “No,” she said. “No one will dress her to match me.” It is small, but for Nora it is big.

It’s harder to know what’s going on with Henry. Steve and I discussed in the early days how little Henry truly seems to grasp about the whole situation. We thought that if we brought Anna in the door tomorrow, Henry would probably ask a couple of questions and then go on like she had never left. That was reinforced last week when Henry watched the Anna video with Steve. I asked Henry how Daddy was doing. Henry said, “He’s sad about Anna. But it’s OK. She will be home soon.”

In the beginning, Henry was just trying hard to process everything that was going on around him. He wouldn’t talk about Anna, but he liked to watch her video. He has also reverted to his previous separation anxiety and would not go to his last two dance classes. Yesterday, we stopped at the playground halfway through our walk. Nora and Henry were on a big tire swing. This was their conversation:

Nora: We could fit one more person on the tire swing
Henry: Yeah, like if Anna grew up
Nora: That would be good.
Henry: Yeah!
Nora: Yeah, but she’s in heaven … too bad, right?
Henry: Yeah.

And they went on swinging.

We thank God every day for Nora and Henry. They get us out of bed. They make us laugh. They make us make breakfast. And lunch. And dinner. And several snacks. They want to play. They want to go to the pool. And always, Henry wants to go to the zoo. So … we do. And just by the mere act of doing normal things, we become a little more normal. New normal. Normal that encompasses loss. Normal that does not forget but does function.

Eleven-and-a-half weeks with Anna was not long enough. And yet it was so long. The words Steve used to describe Anna’s life in her eulogy ring in my ears, “Eighty long days.” I can imagine people thinking that maybe we didn’t really know Anna. That she was so young … that her personality had not emerged. And that is my biggest fear. Because we did know her. She was a real person. A unique person. She was sweet and smart and funny. Our lives realigned around her. And we loved her. And she loved each of us.

Her life had meaning because she was part of this world. She was part of our goodness. Part of our tragedy. Anna was — is — part of each of us. I said in my last update that Anna changed the world. I said that when our immense sorrow faded, we would be united in goodness. We need this to be true. So we are specifically asking every person who reads Anna’s story to add to the goodness in the world. Magnify your talent. Eliminate a vice. Help someone. Make sure the people you love know you love them. Say something. Do something. Be something. Do it for Anna.

Steve created a Web site,, and soon you will be able to record there how Anna changed your life. We hope she did.

I said in the beginning that we are overwhelmed … awed … by the strength and generosity of our family, friends and colleagues. We can never, ever thank you enough. You truly sustained us in this first month. We’re going to need you for a long time. Amid this disabling grief that we never expected, we feel oddly blessed, too.

Jenn, Steve, Nora & Henry

Don’t be afraid for I am with you. Do not be dismayed for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand.
Isaiah 41:10

P.S. For the next year we’re going to write a weekly blog that can be accessed through our site, I hope that in some small way it will help us get through this. On our site, you can also see Anna’s whole story, pictures of the small miracles we’ve witnessed since she went to heaven, and other things from our life with her.

P.P.S. We also have two ongoing projects. One is to fill our yard with natural tributes to Anna. We received a magnolia tree that is planted in the side yard, there is ivy from a flower basket growing in the back and we planted the hydrangea tree we bought for her memorial service on the fence line. Many of you have asked about giving us money for a tree or something else to plant. Because we have a small yard we would like to pool those donations and plant a blue spruce or another evergreen in the corner of our yard. I envision decorating it every Christmas, and hiding eggs under it every Easter. (I realize the kids will catch on pretty fast.) So come visit the yard — and us — any time.

The other project is the card map. We have been supported and uplifted by the sheer volume of condolence cards we have received. We were humbled that first day when Steve opened the mailbox and found a dozen cards. And then they kept coming and coming. It is a testament to the power of one small life. The stories and messages of support from friends and even strangers is amazing. It started us thinking that maybe we have gotten a card from every state in the country. We’re going to create an online map on our site this week to record all those letters. Take a look. And if it turns out that we’re missing a state, would you forward Anna’s story to someone you know there? I know it is small, but somehow the process feels therapeutic.