Mothering Cal

May 9, 2013 1:33 PM

What I learned from parenting a terminally ill child.
posted by dfm500 (16 comments total)

My goodness... I salute that mother.
posted by DreamerFi at 1:43 PM on May 9, 2013

Wow, crap. I think in general "put the iPhone down" is really great advice for everyone.
posted by roomthreeseventeen at 1:49 PM on May 9, 2013 [3 favorites]

This is very hard to read, but it's advice no parent should ignore.
posted by brain_drain at 1:52 PM on May 9, 2013 [1 favorite]

I think this is in the "some have greatness thrust upon them" category
posted by thelonius at 1:55 PM on May 9, 2013 [1 favorite]

wow
posted by shockingbluamp at 2:06 PM on May 9, 2013

"Be mindful of how fragile this all is"

Operating from that perspective will change the way you live your life.....

As someone who lost a child, I repeat that as truth.
posted by HuronBob at 2:27 PM on May 9, 2013 [11 favorites]

I have the type of personality where thinking about how fragile everything is makes me more anxious than grateful and strengthens my already too-strong tendencies toward overprotectiveness. Still, this piece made me cry. Deepest of respect for this mom and also for you, HuronBob.
posted by onlyconnect at 3:17 PM on May 9, 2013 [2 favorites]

Bah, bah, bah.

Suffering does not make you wise and tragedy is not the life teaching you a lesson.

I can't blame this woman for turning her grief and pain into something that feels meaningful to her, but she says nothing new or interesting and I find it distasteful to participate in her suffering this way.
posted by MartinWisse at 3:24 PM on May 9, 2013 [1 favorite]

This hit me, I'm going to remember the things she said for a long time. That she can wrench herself out of the constant looming grief to have any perspective at all is amazing.
posted by lemniskate at 4:29 PM on May 9, 2013

For a related take on helping an adult son with a terminal disability live life to its fullest, there's this story posted yesterday on The Hairpin.
posted by limeonaire at 4:43 PM on May 9, 2013

Suffering does not make you wise ....

No, but suffering allows you a perspective not everyone has, and a generous person is willing to share that perspective in order to enhance the lives, relieve the suffering, and provide guidance to others. To dismiss her words in this manner is pretty harsh..

and, know what, nobody forced you to "participate".
posted by HuronBob at 5:19 PM on May 9, 2013 [8 favorites]

Wow - limeonaire - that's an amazing article. Reminds me a bit of the movie The Sessions - based on a true story and very similar.

I think the mother in the original post is very wise. Going through something like that has the potential to leave one just horribly emotionally damaged. She is finding something more through her sorrow which not everyone can do.
posted by leslies at 5:21 PM on May 9, 2013 [1 favorite]

Wow, limeonaire, that should be an FPP. It's both very touching and very problematic.

MartinWisse, I disagree strongly with your dismissal of this piece, but I agree with something I think you're getting at. Disability and death is not something sent to make you stronger, or part of some grand plan, as some people say to help themselves get through it. Calliope's mother doesn't seem to be peddling that kind of nonsense. This article is deity-free.

It occurs to me that it wasn't long ago that nearly everyone who raised children had to learn how to lose one.
posted by Countess Elena at 6:07 PM on May 9, 2013 [2 favorites]

I have had certain epiphanies from associating with the parents of children who were in special circumstances. By special I mean that they were not able to take health for granted, their smiles were never casual. Happiness was in the moment, because the past was blubbering agony, and the future was speculated horror.

You know some dead people. They went away one day, and you actually went to the ceremony where they lowered one of them into the ground. You expect to outlive your children, or else maybe you don't have children, so the parameters of the parent-child attachment is a theory to you. You are at the age where your life's stream is broad and long. You can't remember the beginning, and the end is not yet in the offing, so it's too far away to matter....the end is too far way to matter, so it's just a theory, not part of the paperwork you do as you go over his medical records, or hold the dear one next to your heart.

It doesn't take much for the metaphor to take root. I shot three horses, had my vet put down two good dogs. Those are small samples, totally geared for personal consumption, to show you how it works. They are sweet pain at its best. The order of magnitude undergoes exponential gain when your child is the vehicle of communication between you and the void. This is not a metaphor for anything.

If you aren't able to acquire a layer of resonance to your world view after these experiences there may be something wrong with your hard drive. Probably you have ROM system and don't know it. Sure, it's patently shallow to rely on the "what doesn't kill us makes us stronger" blurb. Most of that stuff is fodder for the uninitiated. They laugh. Anyhow, it probably should be more flexible, as in: "what doesn't kill us makes us hold our breath in awe, because we just saw a demonstration of the interface between our mortal existence and the other side."

Oh, I still laugh at it, but I admit that my laughter is more from nervousness, or maybe because a death has given me a peek, and I now posess a better sense of my own puny, flickering life force.
posted by mule98J at 7:37 PM on May 9, 2013 [7 favorites]

The whole thing hits close to home, and this bit in particular is spot on:

Here is what you say to parents like me: “I think of you so often.” Please don't say, “You are my hero and I don't know how you do what you do.” We are not heroes, we are obligated to do this and if you found yourself in the same circumstances you would be no different than us.

Just exactly right.
posted by RedOrGreen at 9:12 PM on May 9, 2013 [1 favorite]

Emily Rapp and Doron Weber both lost children to illness and both wrote about the experience. These are very different books but both have attracted some criticism about how the authors deal with the experience on the pages. They were also both written while the author was clearly still in the middle of it; Rapp completed her book while her son was still alive. I found both books hard to read, and now this article too. It's hard to think of other written works where the authors are so clearly struggling to come to terms with something. And in some senses failing, because you don't come to terms with something like that, and certainly not while it's still going on. It almost feels like a violation of privacy to read, and yet these authors clearly are driven to express something.
posted by BibiRose at 4:14 AM on May 10, 2013