Christie and Eric

In the past few weeks, anticipating a visit from my “long-lost” daughter, her husband and our two grandchildren, my mind kept drifting to a painful place. At some point in our reconnection as a family, Christie may want to know more about the brother she had but never knew and will never know. Little Eric died at two years old, long before I knew of Christie’s existence. The fact is, we’ve become a real family since finding each other. To Maggie, Ginger and me, it’s almost as if we’ve always known Christie and her family. There is no feeling of “half” this or that, we’re now just one bigger family.  Even Maggie instantly welcomed Christie as her daughter and two new grandchildren as fully her own (perhaps after a moment’s math to determine this had happened before the two of us had met).  The joy we feel at having our new family members is impossible to convey, although I have written about it here and here, which I hope you’ll take time to read.

About twenty years after Eric’s death my perception of how the loss of a child affects family members expanded considerably. (More about that in the epilogue below.) While not presuming how Christie feels about this, one of my new insights was that a family who loses an unborn child can experience grief as intense and lasting as those who got to know the little one.  It is this lesson that awakens in me a sensibility to Christie’s potential feeling for a sibling she never met (and knows little about because any time she asks about Eric, we tear up).  Maggie, Ginger and I got so much from knowing Eric for two years; Christie got none of that.

And this is part of why I get so choked up working to put together the story of Eric, my son, for the dear and wonderful sister who never knew him, and the nieces he never met.  In the past six months, in anticipation of her and her family’s visit, I’ve done the easy stuff. I’ve scanned all our photos of Eric, digitized the videos we have of him and his memorial service into modern formats and compiled everything into a series of computer folders. I’m now trying to cull it all down into the most significant bits, to somehow convey the story without it taking days to get through. As regular readers of this newsletter are aware, being concise is not a characteristic for which I am known.

When the planned January 2021 trip was postponed due to Covid concerns, a part of me was relieved – I had more days to procrastinate on this project!  I know I can’t just point Christie to the folders and say, “have at it.” There must be some way for me to bring her along a path, explain to her what I think she’ll want to know and in what order. It is at times like this when I envy real writers at places like The New Yorker magazine, who always manage to put complex topics into beautiful prose with skill, finesse and beauty. And I bet they have good editors, too.

I feel the first step is to acknowledge the potential anger and feeling of being horribly cheated Christie may very well feel. I understand it.  I am so sorry.  There is nothing I can say to help her deal with this.  It just is what it is. While I could murmur positive aphorisms, frankly I don’t believe them. Eric would have been thirty years old this year, and I still think about him every day.  Nothing fixes something this ridiculously awful.

There are things Christie should know about her brother and while I’ll not go into all of them here, I want to hit a few of the high points.  First, his arrival was a wonderful surprise, at least for me.  While the decision to have our first child, Virginia, had been consciously thought about and extensively planned in advance, to me it seemed having Eric came up more suddenly.  I’d recently left my job in Los Angeles. It had been an exceptionally demanding time for AT&T and my role had put me under a great deal of stress. This behemoth corporation was trying to transition from an old way of doing business which it knew a lot about and was good at, to a new way in which it knew very little.  I was part of the “new wave” and naïve enough to not fully understand the duplicitous nature of some senior managers who sabotaged efforts to upset the status quo. My success ultimately cost me my job.  Fortunately for me, IBM came along with a brand new idea and a need for someone with my skills in Los Angeles.  I was only six months into this new job when Maggie announced she was pregnant. To me, it felt like only a few weeks later, Eric was born, on September 28, 1990, just two days ahead of my 40th birthday.  What a neat present! It was so cool and wonderful to welcome a new little guy to our family.  We all loved him instantly.  But it wasn’t more than a week before we learned something wasn’t right.  Maggie called me from work.  She’d taken Eric in for his one week appointment, and her pediatrician insisted she take him to Huntington Hospital’s pediatric department and have him looked at immediately.  She was there, and could I come over, right away?

By the time I arrived, Dr. Ricardo Flores had made an initial exam of Eric and was concerned.  He wanted to admit Eric into the pediatric ICU (Intensive Care Unit) immediately.  He’d determined Eric’s heart was not functioning properly and they needed to get him stabilized and conduct more tests. By the next day, Dr. Edgardo Arcinue and a top pediatric cardiologist, Dr. Vincent, would be involved.  Little did we know that ICU would be Eric’s home (when he wasn’t out having heart surgery), for the next 13 months.

Let me summarize what could be thousands of pages into just a few.  Eric would go from spending days, even weeks, in a near coma, extremely sick, his life hanging by a thread.  Then he would transition to long periods of “getting better,” weeks when all the news was upbeat and he eagerly and joyfully interacted with all of us, parents, nurses and staff.  We’d dress him up and he’d tour the hospital and grounds.  During one of these periods, he had a surgery to repair his heart defects.  And then one day it happened, he no longer needed the super high-level attention of the ICU and he was released to go home with us – with full-time, 24-hour nursing support, of course, as he was still on oxygen.  Just over a year in the ICU and he was alive and coming home!

At home, Eric thrived! No, seriously, thrived in an almost super human way.  Chronologically, when he left the hospital, he was 14 months old, but with his stunted physical development he appeared much younger.  Now, at home, Eric grew like a weed.  He went on wagon rides around the neighborhood and through trails in the mountains, pulled along by our Rottweiler Heidi.  We took him to a week-long outing in a cabin in Big Bear, California and he had a ball.  His legs weren’t developing as fast as some of the other bones in his body and so for several months, he wore a brace on his legs.  The doctor who fitted them at first indicated Eric may have to wear them for life, and perhaps when fully grown, need the assistance of a wheelchair to get around.  But then, after just three months, the doctor couldn’t believe what had happened, and began making plans to remove his braces.  The X-rays said his legs were coming right back into shape and in a few weeks, the braces could be removed.  He saw no reason Eric wouldn’t eventually walk, run and kick a football just like a normal kid.

At a checkup, when he was at 20 months, our doctors recommended an elective heart surgery for Eric.  It wasn’t a requirement, he would be fine for the short term, but if we didn’t do it now, he’d likely need the surgery in his mid-teens.  However, his recovery had been so solid, he was so advanced and strong, the doctors felt he would tolerate the procedure easily and, given that IBM wanted me to move to New York, perhaps it would be better to have the surgery done in Los Angeles by doctors who were familiar with his case. We decided to go ahead and have the surgery done in LA.

In retrospect, this was a big mistake. Not by us, but by one of Eric’s doctors.  He was a cardiologist who shared a practice with Eric’s main cardiologist, not one who knew his case intimately. He was on the fringes of Eric’s host of caregivers from the beginning.  This physician was full of himself. Neither Maggie nor I were ever comfortable with him in charge.  We always tried to arrange to have another doctor we knew and trusted supervising Eric’s care and not this man.  Sometimes it couldn’t be avoided, but we were always on pins and needles until he was no longer the one in charge. We also made it a habit of rigidly making sure he knew what he could and couldn’t do, and that he was not allowed to make any changes.  Early on, under his own volition, he’d changed one of Eric’s medications and it had been a disaster.

Eric came through this final surgery with flying colors.  The surgeon, visiting with us after the surgery, was so thrilled to operate on a “full-functioning,” strong little boy and not the high-risk baby she’d operated on a year earlier.  They’d fixed what had needed fixing and he was doing great. We waited at the hospital until early evening. I left first, Maggie a bit later. She finally came home to a late dinner I’d prepared. She wouldn’t leave Eric’s side until he was resting peacefully and all was well.  The above mentioned least favorite doctor was in charge of the surgical recovery area, but we felt it low risk as he had written and verbal instructions by Eric’s primary doctors to do nothing.  He was to allow Eric to sleep through the night, and in the morning, they would assess his progress and determine next steps and when he should be extubated.  However, this doctor felt he knew better: around 11 pm that night, he made the call to remove Eric from the ventilator, depriving him of the machine that was keeping him breathing, as his recently traumatized heart recovered from surgery. Eric quickly failed.  Attempts to re-intubate were unsuccessful. His heart stopped and he could not be resuscitated.  He was pronounced dead a few minutes after we arrived back at the hospital.  When I learned this doctor had ordered Eric to be extubated against the written orders in the chart, I physically sprang for him and had to be restrained by the medical staff.  I knew he’d effectively killed my son through his arrogance. Driving home from the hospital, all I could think about was how to tell Ginger.  She’d always been a big part of his life.  She visited him in the ICU, brought him toys and cried when he was not doing well.  Once he came home, the two of them were inseparable.  She played with him all the time.

The flood of activity over the next few days, the arrival of family and friends and even Eric’s long months in the hospital are now a blur. Our memories of Eric revolve mostly around his being at home, seeing him as such a happy, bubbly, smiling little kid who charmed everyone he saw.  It was like he had magic powers. He once charmed a stoic and hardened group of firefighters, completely wrapping them around his tiny fingers.  He and I would sit at the kitchen counter, reading the Sunday paper. He loved the funnies, however, he was unclear what part of the colorful funnies were the top and which the bottom.

Our morose and grief-stricken family made the move to New York.  Suddenly, being in Pasadena was just too painful.  In fact, to this day, it’s hard for us to drive through that area of Los Angeles when visiting friends there. As a family, we were shell-shocked for several years. Ginger had lost her only brother and had a huge part of her life stolen from her.  We eventually began to stabilize, individually finding our footing as we emerged from a long, dark tunnel of anguish.  But it became more and more difficult for Ginger.  All the normal resentments she’d felt about a new child in the family, a sick child who’d harvested 100% of our attention, had come down on her after his passing like a heavy, impenetrable cloud. We finally secured help for her in a marvelous therapist, who brought Ginger slowly and beautifully back, not only back from talk of suicide, but back to us. Each slowly emerging glimmer of light, like a tiny miracle, allowed us to begin to heal.  Joy and laughter found a place alongside the loss and loneliness we all felt.

In September of 1994, Maggie gave Ginger and me a beautiful card with the photo of a bird painting by artist Marvin Oliver, with a poem she had written inscribed on the inside:

On this Day

On this day, four years ago,
Our family grew from three to four.
For one, a brother, for two, a son —
For each, a someone to adore.

At first, he looked like Ginger,
Red-tinted hair and ten small toes.
His “baby blues” were much the same
And, like her, he had Steve’s nose.

Unlike Ginger, though, his heart
Was born not trouble-free.
It changed us, each in different ways
But we’re still a family.

When Eric died a star went out
The sky is dimmer now
Though many stars still twinkle bright
It’s not the same, somehow.

Precious is each child born
Winning mothers with their charms
And blessing fathers warm and kind
Who comfort Children in their arms.

It was signed: “For Steve and Ginger, Sept. 28, 1994, Margaret L. Larsen”

In September of 1997, Ginger wrote a letter to Eric for an English assignment and I’ve reproduced it below:

What awaits Christie when she and her family come to Phoenix is a photo album of Eric, at all stages of his life. It will be easy to complete.  I’m working to edit a bunch of his video appearances into a “best of” collection, but through a combination of the tools being more difficult than I’d hoped and my own ineptitude, it’s slow going. I’ve left his Memorial Service video as is.  It was nearly impossible for me to bring myself to attend this event when it occurred and I’ve have never been able to watch the video made that day.  Several of Eric’s doctors and nurses spoke and I understand they were most eloquent, revealing sides of Eric few knew.  Others speak on the video as well and I believe both Maggie and I say something, too.  I just don’t recall what. Christie might want to see that.

While this is my “short” version of the story of Christie’s brother, Eric McKinley Larsen and we all miss him terribly, it will be okay with us if she wants to know more.  We may cry when talking about him, but it’s okay, and good for her to ask questions.  He is as real to our family as any of the rest of us, and we want Christie, her husband and our grandchildren to know all about Eric and be able to think and talk about him, too.

Epilogue: Although perhaps not, this all might be easier if I’d not met Joanne Cacciatore, Ph.D., in a Starbucks on Thunderbird and 7th street almost ten years ago. That chance meeting led to my involvement in the MISS Foundation. Through Joanne and her wonderful Foundation, I came to better understand the grief and pain experienced by all parents who lose children. At a gathering for parents who’d lost children and subsequently committed themselves to helping others cope with that loss, a major bubble burst for me, resulting in a new understanding of grief. Since Eric had died, somewhere in my head, an odd and mistaken concept of grief hierarchy had evolved. For some reason, I thought that if you lost a child who was an adult versus a teenager versus 8 years old or an infant, your grief would be different.  Losing a two-year-old versus having a miscarriage would, of course, result in far more grief.  I could not have been more wrong. As I got to know Joanne and her cadre of volunteers who’d lost children and saw how they now dedicated a part of their lives to being with and comforting others experiencing this tragedy, I learned something. The horror and sadness of a woman who loses a child through miscarriage has every bit the panic and terror of losing an older child. Listening to women talk about how they’d managed to put their lives together after having buried an unborn child, made me so grateful for the fact that we’d had Eric for nearly two years. I got to see his smile, watch him learn to crawl and stand, feed him, hear him scream and coo, hold him while he slept. Maggie and I were so much more fortunate than women whom fate had cheated out of even this short time.  We lost Eric just before his second birthday, but we got so much. Christie got none of that, which breaks my heart all over again.