The man in the arena

Playing on a popular internet meme…

What my husband thinks I do at work:

What my mother-in-law thinks I do at work:

What I think I do at work:

This is a gladiator (the only lady gladiator on google images that doesn’t look like a porn star)

A gladiator you say? Yes.

I think of myself as a person fighting to change bad societal customs..all the foolishness that developed in the middle of the 20th century when perinatal losses shifted from home to hospital and people who didn’t know any better made a wild guess about what would be helpful (but they were wrong).

I rail against the lunatic fringe from both sides, both those who think that unborn babies aren’t people (and aren’t important) as well as those on the polar opposite where social pundits would presume to micromanage the decisions parents make for their own sick and dying children.

I fight against the idea that there is ever a time to tell grieving parents to “get over it”…I’ve taken care of hundreds of people over many years and “getting over it” is never a goal of mine. My goal is to walk with them while they integrate this life-changing  experience into who they are as people who then put one foot in front of the other.

I cheer for nurses who approach me (often sheepishly at first) to share that they want to learn more about this work and nurture their skills. Some of them are nearby and I get to watch them bloom, some are far away and I may never meet them in person. Some have had to fight against a situation where they are told they are weird and disgusting  for wanting to give care to babies who die (Oh I really feel my inner gladiator coming out when I hear that).

I am so proud of my bereaved moms when I see them evolve from barely holding on, to coping, to thriving…the most amazing thing is when I get a call from them telling me how they are mentoring another (probably newer) bereaved mom.

I am thrilled to see a nurse who avoided loss cases earlier in her career grow into a person who negotiates overtime on the condition that she gets to stay with her lady who has suffered a loss.

I am encouraged by the bravery of the hurting bereaved parents who let a lady they have never met before enter their sacred space to talk to them.

I am sincere in the kudos I give my employer for their willingness to commit the resources needed to do this task properly.

I’m humbled by the witness and generosity of the musicians who are with me for every outdoor memorial service…if it is raining and they can’t play their instruments, they honor the babies with their voices in song.

I am energized by the peers who do my work in other cities and stay close via technology to be available in a moments notice to troubleshoot, advise or just listen.

I am appreciative of the entire city who gives me the support of anything I ask for to help bereaved families. From high-end cameras to paper /ink to print photos for parents to clothes, blankets, books for parents – the list goes on…I’m given so much that I have to share it.

And yet there are the naysayers…they don’t present themselves in physical form in front of me as none of them are local to me…these are disembodied voices in the blogosphere. It might surprise you that  the most difficult detractors I deal with are people who you might think would be my staunchest supporters – those who quickly tell you that they value little babies, sick babies yet they are convinced that babies die because medical people don’t try hard enough. It shouldn’t be a huge surprise that people have a poor understanding of the limits of neonatology given the inaccurate information about it in the media. I have read articles written by people who wouldn’t know a neonatal umbilical artery catheter if they fell over one but will be critical in ways that have no basis whatsoever. I’m more that happy to explain things in detail so that people can understand, but accusations like “you just want to save money by not caring for the sickest babies” is so inaccurate that it is hard to know where to start.

Perhaps the strangest naysayers though are those who entertain the odd conspiracy theory that professionals who advocate Perinatal Hospice are actually trying to create a process of stealth euthanasia. Where were these people in the years after prenatal diagnosis became common  when parents were given NO support at diagnosis? I didn’t see them lining up with a strong shoulder to lean against. Where are they when a mom needs someone to answer the hard questions and learn what her experience will likely be? Where are they when the baby is born and is sick as we all feared and only breathes a few shallow breaths? Are they going to lay that baby on the mom’s chest and tell her that she did a good job and now is the time to talk to the baby? No, they will be sitting at a keyboard ranting about something…for these folks, I have a few words from Theodore Roosevelt…

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat. 

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