Gratefulness

I'm at Gratefulness.org this week with the Extreme Parenting Video Project.  I love being next to the Word of the Day, especially because it's from Kurt Vonnegut:

We have to continually be jumping off cliffs and developing our wings on the way down.

 Such a great site -- poke around on it, reflect about it, support it and share it. And if you know someone who could use some cheering up or who's going through a difficult time with a sick child or a disabled child or who might be grieving for a lost child, share the video with them. It was certainly a labor of love, and I'm eternally grateful to have been a part of it.


Extreme Parenting Video Project

On On Being

I woke up yesterday morning to a long, kind email from a stranger who claimed to have read my writing on Krista Tippett's On Being website. I didn't know what she was talking about. Then I got a notice that someone had tweeted something I said, or should I say I got a tweet? I have a twitter account (is that how you say it?), but I have used it maybe four times. I have no idea what I'm doing reading or writing tweets. Or twittering. And then someone liked -- or is it favorited? -- that tweet. Or is it twitter? Oh, twat! In any case, I eventually made my way to the On Being site and saw that a post I wrote years ago was their featured blog post for the day and that they'd also posted many photos from my blog and the Extreme Parenting Video Project. My name was right on there, as was my picture and a little bio. A link to the ebook was there, too.

I'll make a long story short. I had no idea why all of this was published. I never received any word from the site that they were publishing my work, and here's the clincher: I have no memory of submitting anything to them. I wrote the editor and explained that while I was thrilled and honored to be featured, it felt weird to have not been contacted beforehand.

The internets are strange and wild, indeed.

The editor got back to me with an apology for their oversight in not contacting me. Evidently, I had submitted the piece, but I'm not sure when. Have I gone mad? Again, I have no recollection of doing so, and the piece was written in 2012, well before we embarked on the cannabis odyssey.

 The On Being website and recorded interviews are some of my favorite things generated online, and I have often felt that Krista Tippet might have the best job in the universe. So, wow. I'm honored and grateful to be included on the site.

You can read it here.

Feel free to tweet and twat and twank about it, too.

Weekend Recap: A Bit About Guns, Neurology, Meyer Lemons, Books, Food and Burkas

Driving Meyer Lemon

Those are some Meyer lemons that I picked off my friend Jenni's tree yesterday afternoon, after I dropped Oliver off for a birthday party. He finally got to do that airsoft gun thing and, of course, had a blast. He told me that there were some creepy people dressed all in camo running around. Grown men. He said that I would have taken one look and walked out. He knows me well. He asked whether he could go again with Henry, and I said that I wouldn't pay for it or drive them there. Ever. Would I let them go if they paid with their own money? Why, yes, I would, at this point. I figure that if I don't let them do these things, they 'll do them all the time when they get older. They might actually be that grown man in camo running around in Lawndale, California pretending to be a soldier.

Anyhoo.

Later this week, I'm participating in the Epilepsy Foundation of Greater Los Angeles conference/summit. On Friday, I'm sitting on a panel with a few other people to discuss CBD in front of a whole bunch of neurologists and physicians. The other participants include an eminent male neurologist from UCLA, an emergency room physician who is also a father of a child with epilepsy and a woman who has something to do with Realm of Caring, I think. The UCLA neuro is in charge of the show and sent over a suggestion for how the panel discussion should proceed. I am evidently first, and he listed my name like this:

1. Start with strictly parent viewpoint - Elizabeth -- I'm assuming you're not involved in research or healthcare.

And so on. Reader, I had to do it. I had to respond with my characteristic thinly veiled irritation. The veil is, of course, irony and black humor. I'll give a fabulous prize to the first person who guesses why I was irritated and what I might have said. I should add that The Neurologist is a great guy, that he responded to me appropriately and with great humor and that we are all looking forward to the weekend. If you remember, the last time I spoke about CBD, I was told that it was as if a bomb had been let off in the room. Maybe this time I'll wear a leotard and light sparklers. On Saturday's Family Day, I'll be with my peeps, showing the Extreme Parenting Video Project that I made some years ago with Erika and Phil and talking a bit about the journey I've been on with Sophie since she's been diagnosed. I guess I should wear the leotard to that event as well, or maybe a burka to suggest the complete erasure of my identity over the last two decades.

What did you do today, Reader? I did some more purging -- lots and lots of it. Frankly, though, my room still looks like the same, cluttered somewhat bohemian space it looked like before. The Barbie closet is sleeker, though, and I threw out a lot of papers. I flipped through some old journals and had to talk myself out of a deep depression. Suffice it to say that there is nothing new under the sun.

I forgot to tell ya'll about Friday night's Books & Bakes. I think it might have been the best one ever. We talked and laughed about John Lanchester's really great novel The Debt to Pleasure. It'd be hard to describe it, but think travelogue, murder mystery, erudite food criticism, recipes, laugh aloud wittticisms and a creepy serial killer. Here's what I cooked:

Provencal Fish Stew
Toasted Baguette with Aioli
Roasted Tomatoes with Farro
Green Salad
Espresso Creme Brulee

Here's what we drank:

Lillet
Pimm's Cup
Rose Wine
Water

The next book for the salon is Anthony Marra's A Constellation of Vital Phenomena. It's happening on April 17th at 7:00 pm. Please come if you can.

Love,

Strictly Parent Viewpoint Elizabeth

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.

More of the Night Before Last, Yesterday Afternoon and This Morning

I'm back in Los Angeles, the Oscar helicopters are circling, and I've already scrubbed my Barbie bathroom clean. 

Let's reminisce.

Here I am in the Chihuly boathouse BATHROOM. It was filled with vintage children's books and weird animal figurines. It was, after the pool, my most favorite room:

Here's a magnificent 85-foot table, made from one slice of a tree that was felled when too many prisoners in a penitentiary used it for escape. It begged for someone to dance right down it, but I refrained.

Here's a close-up of the sculptures that ran down the table in rainbow colors:

Here's a close-up of the bar. See that familiar photo of moi? It was sitting right below the bottle of Scuttlebutt beer that features a mermaid and the letter S. Like my friend Carrie says, There are no accidents. Those photo cards were distributed throughout the boathouse -- the beautiful people at Caregifted loved our video and used the still photos in such a beautiful way.

There were stacks and stacks of warm-colored Navajo blankets in a room ringed by low leather armchairs and a wall of sepia-toned photos of Native Americans. There was poetry by Heather McHugh and Robert Pinsky. There was jazz by Molly Ringwald. There was an excerpt of an upcoming documentary about us -- long-time caregivers of the disabled, made by the extraordinary Adam Larsen. Remember that name. My friend Cara and I drank, perhaps, a bitt too much beer and wine. We laughed a lot. I told her secrets, and she held them. When the event was over, we took a taxi to a restaurant called Grub, and I ate sauteed calamari with a light, flavorful sauce of tomatoes and wine and garlic. I drank a whiskey sour, and I slept well.

Yesterday afternoon, we hosted a luncheon for the caregivers, and I met and talked with the most wonderful people -- all recipients of respite weeks. They each have incredible stories, many of which will be featured in the documentary.  It was rainy in Seattle that afternoon, but I lay on my bed and read and thought about everything, relished it all. Last night, I sat in the living room, sipped some berry wine and talked for hours to Adam about caregiving, about dance and documentary and cities and life. Remember what I said. Remember Adam Larsen's name!

This morning, I woke early, and Heather gave me a ride to the airport. We stopped at a funky hippy bakery and got coffee, talked every second of the 45 minute trip. I love this woman and can't believe my good fortune to have met her.

How's that for superlatives thrown willy-nilly?


Reader, what did you do this weekend?

Kerry Girl

This is Kerry, and barely a week ago, she died unexpectedly after surgery to correct a vicious infection. Kerry was three years old. Kerry's mother, Kristin, a woman whom I have never met, sent me the following email a few days ago, and I was quite suddenly yanked up and out of the abyss where I had been resting.

Hi there Elizabeth, I wanted to reach out to you for thanks.  Our three year old daughter, Kerry, passed away almost a week ago.  Her service was held just yesterday at our family's church.  Your extreme parenting video was shown to the 200+ people that attended. 
Kerry was diagnosed with infantile spasms shortly after her first birthday, and I so appreciated you and the rest of the bloggers I found that were able to put into words what I was and am are unable to express. During the service our pastor mentioned your "her eyes will sustain you" as a particular image that stood out to him.
i just wanted you to know that your video has reached so many people, and to thank you for putting into words what I have been feeling these past three years.
Thank you more than you will ever know,

Kristin 

Contrary to what some of you might think or even be feeling yourself, being yanked out of the abyss where I was resting was not, emphatically not, because I felt blessed, because my children were alive and not like little Kerry, gone far too soon. Kristin's astoundingly generous email to me and to you, the other parents that participated in the extreme parenting video, didn't separate me from her or my Sophie from her Kerry. I did not, for a moment, think Oh, thank God. Them, not me. Her, not her. Kristin's hand didn't reach into the abyss but was, I think, always there. I have been struggling to articulate this for days, this grace that descended in the form of an email from a stranger.

We are all connected. All the time. 

Since that email, I have exchanged many words with Kristin and learned a bit about her beautiful little girl Kerry. Kerry and her twin brother Matt were born early in Colorado to parents who had long awaited children. It was clear that Kerry had some congenital abnormalities, and soon after birth she had her first seizure and was later diagnosed with infantile spasms. While the seizures were quickly controlled with medication, Kerry had developmental disabilities and made slow progress, but her family provided her with all the necessary treatments and of course, love. Kristin wrote this:

Therapies continued, head control was getting stronger, more avocados being eaten, plans being made for preschool and we got braver when taking her places in her toddler wheelchair.  I did not handle the stares well, I must say.  Many "chin down, eyebrows up" looks from me to people who looked a little too long.  She also loved to sing...her songs were mostly drawn out vowels mixed with short consonants, but they were truly her.  She supplied the soundtrack for our days.  Scarves became her favorite texture, she would feel and stroke the fabric against her skin...finally found a use for my mothers satin pillowcases!  

Kerry died after surgery to correct a massive infection in her ear, and Kristin told me that she hopes that her little girl is not forgotten. Please help me to help Kristin know that Kerry will not be forgotten, that this little girl who loved avocados and scarves, who sang to her family and provided the soundtrack to their days, is connected to each of us. Please let Kristin know that we are connected, all the time.

Thank you, Kristin, for sharing your little Kerry with me and for allowing me to share her with others. I am so sorry, so saddened by your loss, by our loss. We are all connected. All the time.

The Extreme Parenting Video Project One Year Anniversary!

In case you missed it last year, it's the one year anniversary of The Extreme Parenting Video Project that I initiated a few years ago and that my dear friend Phil Konya helped me to put together. Thank you so much for viewing the video and for sharing it -- so far nearly 33,000 people have done so!

For those of you who are new readers, I put out a call to parents of children and young adults with disabilities or differences to tell me what they would tell themselves on the day their child was diagnosed or when they learned of their child's disability or illness. I got back beautiful testaments of strength and resilience, humor and love. Turn up the volume and read what they said, admire their beautiful faces and just let yourself go.

What are you doing?

Me? Oh.

I'm watching the entire five seasons of Brothers and Sisters, and while it's devolved into pure soap, it's been a great binge. I thank Carrie Link for the addiction.

I just saw the movie Still Mine with James Cromwell and Genevieve Bujold. I loved it.

I'm reading the last chapters of Transatlantic by my Irish love, Colum McCann. I've savored every word although less so than the ones in Let the Great World Spin. 

I'm also going to start Meg Wolitzer's The Interestings and read that along with Flaubert's Madame Bovary.

I ordered but have not yet received this poetry series. There's stuff in there by Lydia Davis, one of my favorite short story writers. She also translated the edition of Madame Bovary that I noted above.

I'm listening to this by Patty Griffin who also sings the song Heavenly Day, featured on our Extreme Parent Video Project that is almost a year old and has nearly 32,000 hits.

I'm also listening to this. We've been lonely. We've been lonely too long.

I like this poem -- it reminds me of my receding respite week in Canada:

Northwest Passage

That faint line in the dark
might be the shore
of some heretofore unknown
small hour.

This fir-scent on the wind
must be the forests
of the unheard of month
between July and August.

James Richardson

So, Reader. What are you doing?

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?

You 10,000 yous

Our little week-old Extreme Parenting Video Project is creeping up on 10,000 hits as I type this! It's been viewed nearly 10,000 times in one week! How fantastic is that?

Thank you so much for sharing it on your blogs and on your Facebook pages, for emailing it to your friends and relatives and thank you to them for sharing it onward. I think I can speak for every parent that participated that it's an honor to have made an impact, however small, on those who might be new to the path of extreme parenting and those who have been walking it for a long, long time.  Given the number of emails that I've gotten, I can also say that it's made an impact on those who might not have the same experience but who find something of relevance in the soulful eyes and powerful messages conveyed in those simple signs.

Bless your hearts (said with no sarcasm, by the way), you 10,000 yous.

3.3 at 3:26

I woke up with a literal jolt this morning and realized immediately that the earth was shaking. Valentine the dog stood up, too, and yelped and I said, it's ok in a louder than 3:30 in the morning voice. Despite having lived here for more than 14 years, I've never felt that surge of the natives, nor do I roll my eyes and roll back into sleep. I sit upright, for hours, with the lights on, waiting for the slightest tremble with my stomach queasy and my heart beating. The Husband, who was sleeping with Sophie, didn't stir, not even when I flipped the hallway light on. The boys slept on.

Well, it's morning and the sky is blue and no new cracks have appeared in the plaster walls. The earthquake, a 3.3 whose epicenter was in Beverly Hills, just down the road from where we live, is now just another one that I've experienced and certainly not The Big One.

I woke up this morning to see that the wonderful Design Mom has posted about our video -- another earthquake, I'd say, and the kind that does make me feel a surge of excitement. Go check it out!

Expressing Motherhood

I think I've told ya'll about this show that I'm going to be appearing in late September and early October. It's called Expressing Motherhood and is made up of writers and performers, expressing-- you guessed it --  their motherhood. I participated once before, years ago, and am really excited to be doing so again. If you click on the Expressing Motherhood button on my sidebar, you can purchase tickets and experience the rollicking fun it's bound to be!

I was featured today on the Expressing Motherhood blog, so hop on over there, if you're so inclined. They've been interviewing the participants and posting interesting tidbits about the scene around the theater where we will be performing, so I hope you'll browse through, particularly if you're from southern California. If you're far, far away, know that Expressing Motherhood performs in other cities, too -- Boston, New York, etc. I encourage you to submit your own pieces and be a part of it!

Finally, thank you so much for sharing the Extreme Parenting Video Project on your blogs, your Facebook pages and with all your contacts. So far, it's received over 2500 hits on YouTube! I'm hoping that all families of children and young adults with special needs will feel the support and hope that each of you conveyed.