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jody's avatar

I wanted to write something about ‘power’ but did not.

I wanted to write about the power differential between my 14-year-old daughter with severe brain damage (from her birth) and the subsequent spastic quadriplegia and nonverbal issues that she and we dealt with during her multiple hospitalizations before she died at 16 1/2 in 2011.

I always feared that the doctors would not value her life as much as we did because she didn’t look great lying in a hospital bed. She was unable to sit or roll over or hold an object because of her physical disability. Every time we had to go to the hospital I would bring photos of her sitting up in her wheelchair and smiling and engaging with life. I was trying to show the world of doctors that to us, she was a typical child with much joy.

I was attempting to seduce them into falling in love with our daughter.

It worked both ways.

The care she received was extraordinary.

When we were trying to figure out how to help her through a respiratory crisis, they would gather us ( without my daughter of course) in conference rooms and talk about the pros and cons of various options.

There was one dark shadow in the weeks and weeks of that hospitalization.

It had something to do with power.

One morning my daughter started to crash and nobody realized it except for the respiratory therapist who then called the rapid response.

She was going down.

The head PICU doctor was there with pediatric residents and she asked me if I wanted her to intubate my daughter.

In that moment of crisis, this doctor asked me if I want to let my daughter die.

“ do you want me to intubate her?“.

“Yes please” I responded.

And they did.

And she survived that crisis.

And OK, yes, we finally realized that the only way forward would be for her to get a tracheostomy.

I waited a few months and then emailed that PICU doctor to explain that my daughter, and many other children like her, had a very high-level of quality of life. They had special schools or public schools that accommodated them and families that could not imagine life without them.

These kids had joy and beautiful lives and I told her that in the email.

I did not accuse her or blame her. I quietly explained what our life was like with our daughter.

She emailed me right back and thanked me.

I hope that she never put another family through that kind of moment.

And yes, there are times when a child has a terrible disease and quality of life and compassionate decisions need to be made but the time to do it is not in the middle of a rapid response.

I am sure that I felt aggrieved for writing an email where I had to make a case for the value of my daughters life, but I did it because I wanted her to know how I saw that situation.

My daughter had a different kind of power. She had the power of personality. And joy. She had the power of connecting with people and letting those people see a different kind of life and how valuable it was.

Do you see how lucky we were?

jodygelb.com

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Elizabeth Perry's avatar

Money is not the root of all evil, it’s the love of money, 1 Timothy 6:10.

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