That’ll Do

“Do parents who’ve lost a child parent differently?”

By Steve Larsen

Editor’s Note: This original article was posted on the MISS Foundation’s website.

A month after joining the board of the MISS Foundation and three minutes into my first video conference with Kelli Montgomery, its executive director, I was startled. A four-year-old blond child in a bright red sun dress clambered up on the chair behind her mother.  She began to thrust a ribbon into her mother’s hair with all the skill of the average four year old, and sent fleeting glances toward the computer screen which projected my voice and image.

Prior to the start of our call, Alaina had played quietly in another area of the house.  Realizing her mother was on the phone and may no longer be immediately accessible to her every whim, she sprang to action.  As Kelli and I talked though a variety of operational issues related to the MISS Foundation (a volunteer-based organization providing support to families after the death of a child), Alaina climbed around her mother, played with her mother’s hair and shot quick looks toward the camera so as to catch my eye.

Unable to ignore her, I soon asked Kelli if she would introduce me to this beautiful young princess.  After a few minutes of introductions that included my holding our less-than-enthusiastic kitty, Gilda, up to the camera, we returned to our discussion.  Alaina continued to make occasional, benign efforts to intrude, but mostly settled down and played quietly in an overstuffed chair behind her mother but in the same room.

Not until the next day did it began to sink in.  I’d recently seen this same behavior – parents responding to the demands of a child in an unexpected and non-customary way.  Kelli, typical of many who work with the MISS Foundation, has lost a child.  The loss of Madeleine, her firstborn daughter, impacts how she interacts with Alaina, her living child.

I remembered watching children and parents at the MISS Foundation conference in Tempe, AZ the week before. The children didn’t behave any differently from children anywhere else but their parents did. I observed no frustrated parental outbursts directed at rambunctious children. Parents seemed to automatically drop to their knees, look into the eyes of wayward or misbehaving children and mindfully listen to find the cause of the child’s frustration.

Perhaps bereaved parents, those who have had children die, view their living children differently.  Do standards of behavior change? Are they now more forgiving?  Do expectations for their living children evolve? Are they now more likely to think, “You don’t need to be on the winning soccer team any more, get the best grade in the class, score the winning homerun or get into the best college: you just need to live.”

When Eric, our two-year old son died, our daughter lost her only brother and had a huge part of her life was stolen from her.  In retrospect, I see that my sometimes overly-critical approach to a lot of what she did fizzled out like a defective firecracker.  It wasn’t long before I began to alter my interactions with her.

As a family, we were shell-shocked for several years.  We eventually began to stabilize, individually finding our footing as we emerged from a long, dark tunnel of anguish.  Our daughter, Ginger, had been locked by Eric’s death into terrible guilt and grief. 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 located help for her in a marvelous therapist, Dr. Collette Geary.  It was she 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 slowly began to find a place alongside the loss and loneliness we all felt.

As she entered her pre-teen and teen years, the time when everyone expects girls, especially girls, to become major problems, I found few things intolerable.  Ginger and, more likely, her mother, may recall events slightly differently, but there weren’t major issues for me – at least not with her.  At 14, she announced she’d decided to become a vegetarian. Her mother appealed with me to talk her out of it.  I never made the attempt.  “Vegetarian? Hell, I thought, she could be a Presbyterian for all I care.”

In tenth grade, she asked me to construct 11 fish tanks, each one a precise size, built to hold a different and exact amount of water, and a specific number of fish for a Science Fair experiment. Out of scope for my handyman skills, I elicited help from my cousin Ron to build what she needed.  Ron and I both agreed that what we were doing was crazy, but far be it from me to be unsupportive. She’d made up her mind to do this experiment and I’d made up mine: “I’m here for you.”

The next year, the private school in which she was enrolled informed her they would be unable to accommodate her desire to up the ante and conduct a variation on her Science Fair experiment, this time with 40 white rats.  We then learned that if she raised them at home — her first choice, incidentally — the experiment would not qualify for Science Fair competition.  Hearing the public high school may be better equipped, she visited there and found a science lab with the space to house her rats.  After assurances that her rats would not be used to feed a large snake in one corner of the lab, she learned only students of the school were allowed to use the lab. With no fanfare, she announced her intention of transferring schools and then did so, mostly accomplished on her own.  Five months later, her experiment complete, she arranged to return to her private school. What high school student does this?  What parents allow for this sort of to and fro? I can answer the second question: parents who are desperately thrilled every day that their child is alive.

As it turned out, both science experiments were successful.  Unusual and creative, her efforts received many awards. Her rat experiment took her to the International Science Fair competition in Palo Alto, California and this success played a part in her receiving invitations and scholarships to attend several exceptional universities. She had her own equally direct and focused ideas about college as well, but that is a different story.

After college and in her twenties, Ginger told me, “None of my friends have parents as supportive as you. I can’t recall anything I’ve ever wanted to do that you didn’t try to accommodate. Sure, when I told you I wanted to major in sexuality studies, you weren’t overly enthusiastic but, after a few months, I was getting emails from you with attachments saying, ‘This article applies to your research. Check it out, quite interesting.”

I now believe that parents who lose a child change the way they relate to their living children.  Research in this space is inadequate.  I’ve heard some speculation that parents make one of two mistakes: 1) withdrawal from the remaining children, or 2) holding them too close.  I think we need to consider a third option, which is not a mistake. There is the possibility that they become incredibly effective parents – loving their living children with intensity and passion and with an acceptance and appreciation that every parent can learn from – even those who’ve never lost a child.

We’ve all seen parents show visible disappointment when their child’s little league team loses a game. Some parents let kids think that their love and approval is tied to an SAT score or their performance at a swim meet.  I’ve heard parents berate kids for not getting the best score, the top grade or winning the highest achievement award.  As a parent who’s lost a child, trust me, I’d take the runner up, the second best, the guys who are eliminated in the hockey tournament first round.  Hell, give me my son back and put him in last place; I’ll take that in a heartbeat.  I’d hold him and never let him go.  Give me my son back and I promise to not let a day go by without telling him I love him. I’d even build him fish tanks.

In Mandy Patinkin’s role as Inigo Montoya in my favorite movie, The Princess Bride, he approaches his climatic confrontation with the six-fingered villain, Count Rugen, repeating the line, “Hello. My name is Inigo Montoya. You killed my father. Prepare to die.”   Once he has the upper hand, he commands Rugen to “Offer me money,” then “Power, too. Promise me that,” and finally, “Offer me everything I ask for!”  Rugen repeatedly acquiesces and finally desperately responds with “Yes, anything you want.” Inigo runs his sword into Rugen’s stomach and says, “I want my father back, you son of a bitch.” I’m unable to watch this delightful movie without tears at this scene as the feeling Patinkin conveys is one I know far too well.  My anger at the doctor who countered specific written and emphatic verbal instructions from Eric’s heart doctor, his surgeon and his mother to not initiate a post-surgery procedure on our son, but then did so anyway, in the middle of the night, on an unconscious and defenseless 2-year old, causing his death, has never left me.

There is another line with which I identify, a bit later, after Rugen is dead. His longest-held ambition now met, Montoya confesses: “I have been in the revenge business so long, now that’s over, I do not know what to do with the rest of my life.”

Most parents who’ve lost children struggle to find reasons to continue living and not all of them do.  A study, “Increased mortality in parents bereaved in the first year of their child’s life” by Mairi Harper at the University of York in the UK,* revealed that parents are twice as likely to die in the first 15 years following their child’s death as parents who have not lost a child. Among bereaved mothers in England and Wales, the risk of early demise was four times higher than non-bereaved parents.  But if and when they make it through, and most do, they may very well address parenting differently.

After a year in the hospital, a time when Eric had spent 350 days in pediatric intensive care and survived two “do or die” heart surgeries, he was home and on the road to full recovery. Eric’s progress was rapid and remarkable after this incredibly rough start. He had started to crawl on the living room floor but, according to his mother and her friends, his crawling was “not right.”

Off we went to an orthopedic specialist, who, after a series of tests, called us in for a consultation.  “Eric,” he explained somberly, “would need braces.”  He went on to explain that while he hoped the braces would cause his bones to grow into the right configuration, he could make no promise of that, and we needed to understand that it was possible Eric would spend the rest of his life in a wheelchair.  I can imagine the impression on that doctor as we grinned and said, “That’s it?  That’s the downside? He might live his life in a chair? NO BIG DEAL! We can deal with that. Hell, we thought you might have had really bad news for us.”

There is no doubt in my mind most parents would be devastated by such news. But we weren’t most parents.  This doctor had no idea he was talking to parents who’d had, over the first year of Eric’s life, countless meetings and repeatedly heard statements such as, “We don’t think he’ll make it through the weekend; this is an exceptionally risky procedure, he’s failing – do you want us to call someone to perform last rites?; We’re worried, you may want to let your daughter say goodbye to her brother.”  

They said all this and more. But Eric always came through.  His will to live was phenomenal.  He repeatedly survived situations where every single one of his caregivers – doctors, nurses, surgeons – had written him off, except his parents.  One time they even accidently poisoned him with a 10X overdose of his antibiotic, another near-death experience, but he recovered and thrived.

We never gave up hope. Parents don’t.  We never stopped believing he’d come home and live a normal life. And Eric did come home and he did almost make it to the point of living a long and normal life.  He got so close.

Having him home was a relief, even with supplemental nursing care.  Eric found security in his braces; he used them to push himself into almost a genuine crawl.  He looked kind of funny moving crablike and noisily across the floor. The braces helped him sit upright and he especially liked doing so in his wagon.  At the same time, the braces caused him to need help getting turned over in his crib, although he rarely complained.  Less than six months into the braces odyssey, he had another series of X-rays. The doctor now recommended taking them off.  The bones were growing correctly now.  Eric should be able to run and play as any normal boy – no wheelchair in his future.

Were we thrilled? Of course! What parent wouldn’t be overjoyed at this news? While not having to wear braces made Eric and all of us delightfully happy, don’t forget the real lesson here. We would have been perfectly happy if he’d been in a wheel chair the rest of his life – and still would be – if only we could have him alive.

If your children are alive, be happy.  Feel lucky! Don’t worry so much on how they measure up to a mass of artificial standards that mean next to nothing.  Do you really need to be the one to push your children farther and faster than they are ready to go?  Most likely, they’ll push themselves when the time is right, when they find the thing that ignites the fire deep inside.  When they do, they’ll succeed because deep down, they have something to push off from: the unconditional love and support of their parents.
(1)    Reference: ‘Increased mortality in parents bereaved in the first year of their child’s life’: statistical points and possible extensions.  BMJ Support Palliat Care 2012;2:1 7

 

About the author: Steve Larsen splits his time between advising young entrepreneurs at the Thunderbird School of Global Management and riding and writing about motorcycles. His free-lance articles appear in national cycle magazines such as RIDER and Motorcycle Consumer News and international adventure magazines like the Overland Journal. This is the first time he’s written publicly about his son.  He can be reached at: steve@stevelarsen.net.  A sampling of his motorcycle stories can be found here: http://stevelarsen.net/blog/.

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