Highway Thoughts on Help and Stress

This morning I drove west to my annual OB/GYN appointment and blew my news blackout to listen to Morning Edition on NPR. They did a segment on stress and the effects of stress, how most stress reported has to do with chronic health issues -- people reporting that they themselves are ill or someone in their family is ill or needs help because of disability. I don't feel like looking up the link, but I'm sure you can google it on the interwebs and listen yourself, if you're so inclined. I nodded my head at all of it, of course, but was most struck by a statement about Americans' unique hesitancy to ask for help. Our culture is, of course, one of rugged individualism and self-sufficiency which is courageous and optimistic at best and selfish, unrealistic and downright sociopathic at worst.

As I crept westward on the 10, I mulled over this and was reminded of the video I made with Erika and Phil several years ago about extreme parenting. New readers here might not have seen this video, but in a nutshell, I asked people who care for children with disabilities or those who have lost children to disease to take a photo of themselves with a poster stating what they wish they could say to their younger selves on the day of their child's diagnosis. While I wish there had been more diversity represented in the finished video (I used what I got!), the responses were rich and varied. By far, though, the most common advice parents had for their younger selves was "Ask for help," and "Accept help." I think there's a little of that cultural thing going on here, for sure, and I also think there's some control stuff -- when your world is turned upside down, and you realize that we actually have very little control over our children's lives, you tend to control what you can, and at least for me, I might have thought (unconsciously) that what I could control, I'd do myself. Initially, doing it myself made me feel empowered, in control, in charge and confident. After a while, though, at least for me, I was exhausted, burnt out and incredulous that this caregiving was going to be forever. I won't even talk about what the effects on friendships, on relationships with family and even marriage have been because -- well -- that's no blog post. Despite the insanity, I rarely did ask for help or even accept it when offered. I'm being utterly honest here when I say that this might be one of my only few real regrets of my early years with Sophie (pushing more forcefully for full inclusion in school being the other one).

Just some thoughts as I ambled down the highway toward the paper gown that ties in the front and the speculum.

That being said, I thought I'd post the video here again so that you can watch it and perhaps share it, particularly with those who might be just now entering this strange, lonely, often hellish and overall wondrous world of extreme parenting.

15,000 Plus!

Gustav Klimt

As of this afternoon, Pacific Coast time,  people have viewed the Extreme Parenting Video Project 15,408 times! How awesome is that? Thank you so much for sharing the video -- for posting it on your blogs and sharing it on Facebook and with your friends and relatives. Thank you, Phil Konya, AGAIN!, for putting the slides together in such a beautiful way. I've received countless emails and comments from viewers all over the world about how much it's affected them, whether they have children with disabilities or not. Last night, my friend Tanya (a gorgeous participant in the video) sent me a copy of an email that she had received from her mother. I cried when I read it, cried for gratitude -- for those who understand what the video means and how all of us who are on this path are in it together, powerful and vital.

I had to watch this twice to try and read all the sayings, and to take in all the details of the photos in the background going on, because I was crying so much!  I kept wiping my eyes and thinking of all these quietly heroic people who have, and are continuing, to work so hard being loving and responsible parents, including you, my dear daughter.  One can feel the connected strength and subsequent power between all of you.  I have learned so much, from you and Nigel. 
This project is uplifting and healing and elevates our human species in the universe.  I hope that you can please let the author, your friend Elizabeth, know by forwarding this comment on to her.  And, now I will watch it a third time.
I love you,
Mom

Life doesn't get much better than that, right?

Contrived Scenes - Labor Day

 The Husband and I drove with our progeny down the highway to Orange County, where we visited our dear friends Erika, Phil and Izzy. Phil is the genius who put together the slides for the Extreme Parenting Video Project (that has now had over 4,000 hits thanks to all of you wonderful bloggers who posted it on your blogs!). Erika is the incomparable mother, holding on to her flippin' hat in the video, who can also cook some delicious Hungarian delicacies. Izzy is the hummingbird, their delightful daughter who smiles charmingly at my sons as she kicks her legs and giggles, completely belying the fact that a couple of months ago, she lay in an induced coma fighting for an intact brain and her life.

Here's a shot of what it looks like in Phil, Erika and Izzy's parts:

Here's another one:

Here's the contrived scene from the title. Something about my sons in this little hideaway makes me want to mock them. But I won't:

The children at the top of this grassy hill are sitting on cubes of ice and sliding down the hill. They are contriving to sled (is that grammatically correct?). Only in Southern Cal would you contrive to go sledding when the glorious Pacific crashes onto the sandy beach below, tanned and muscled surfers everywhere you look and bikinied damsels frolicking in end-of-summer waves.

Here's another contrived scene - disregard the blurry photo and Sophie's glittery eyes. I really only made them sit there, together, to get a shot of the fantastic chartreuse couch that Phil picked out. I'm still marveling over that. I mean, The Husband can cook, but pick out a gorgeous, completely hip, chartreuse couch? I had a contrived vision in my head of my beautiful children arrayed on that couch. The colors would pop and it would be worthy of a design blog. Never mind that I only had my Android phone.

We had the most wonderful, relaxing day with our friends and reluctantly left in the late afternoon to drive back to Los Angeles.  It's the last day of summer as school starts for my boys Tuesday morning. Oliver just went to bed in what I think are contrived tears as he earlier stated that he was excited to go back to school.

I could never contrive that light and that sky, the road to our little house just there, on the left, nor my gratitude for all of it.

Friday Surf Report -- Things I Like

• There's a common theme running through many of my posts, and that is one of escape. I'm just about dying to escape, actually -- perhaps to one of the cabins featured on freecabinporn, like this one in Finland. No offense, but I don't want company. You'll have to pick your own porn.

• My friends Erika of The Flight of Our Hummingbird and Phil Dzalio of Healing, Empowering and Thriving continue the struggle with Amber, The Girl Who Would Insist on the Distinction Between Non-Persons, Humans and Persons Despite Being Admonished By Persons Old Enough to Be Her Mother, Wise Enough To Be Shamans and Angry Enough To Rip Holes in the Ozone. Erika, who is not only brilliant but incredibly funny, told me that her comments  to Amber (that were possibly the longest comments known to the blogging world) on Amber's website, where she proudly carries on the discussion using all the knowledge that her recent Bachelor's degree in Philosophy has gotten her, demonstrated her (Erika's) own commonality with the None Shall Pass Knight of Monty Python's Holy Grail. I think it's an apt comparison for many of us in the disability community who just can't give it up. Our formidable strength and resilience, though, is only as strong as our ability to not take ourselves seriously. We do have the most amazing senses of humor, if I do say so myself.

• I'm savoring the last pages of The Hare with Amber Eyes by Edmund De Waal. I've written about it before and highly recommend it.

• I love children's books. I really love vintage ones. I really, really like this blog.