Elena Hung and Little Lobbyists on WhoTF Lives Like This?! Podcast

That's Elena Hung and her young daughter Xiomara. They are powerful women, and you have the chance to hear all about the work they are doing to improve the lives of children with complex medical needs. You'll also hear about how Elena does what she does -- she's an immigration lawyer, a mother, a caregiver and the founder of Little Lobbyists.

Please listen to our podcast wherever you listen to podcasts or click on the button on the accompanying blog by going here:

WhoTF Lives Like This?!

Check back on Mondays for new podcasts -- Jason and I have so many to share with you! I hope that you'll share the links with others, too.

Disability Services 101

The above photo has nothing to do with this post, but when I googled vintage house call nurse, in hopes of finding something relevant, I came upon a treasure trove of vintage nurse novels with the above as the first. I believe I posted about these books before, perhaps when I admitted to a Harlequin romance book club membership in my very distant past, but they're worth a visit. I'm also partial to Hootenanny Nurse and Nurse Pro Tem, which combines my fear of the intimidating Latin term and love of international romantic intrigue. Check them out yourself, in those vast swathes of free time that we all have!

Anyway, back to our regular programming:


My Australian friend Michelle posted this on her Facebook page as her status update yesterday, and I just loved it so much that I got her permission to post it here.

Thanks, Michelle!

Here's what disability services should look like. When your kid gets diagnosed, after a decent interval for tearing your clothes and wearing sackcloth and ashes, a caring human being comes over to your house. They bring a month's worth of groceries and some clean plates. Also cake and coffee. They say: "hi and welcome. Here is every card or identifier you will need for the next...forever. Here is your disabled parking. Here is the key to those swings in the parks they put in but no one can use. Here is a key to special bathrooms made of gold where fairies change your kid while mixing you cocktails. No, no one else knows about them. Here is every bit of equipment you can get, with all the forms pre-filled because we talked to your doctors and therapists. Make any changes you think are best because you're the one who knows your child and their needs most. Here's some money, because hey, society thanks you for taking care of our weakest citizens for us without making them a burden on an overrun and inadequate public system. Here is ample respite care for both you and the child. And here is a support group and some free marital therapy. Call me anytime. Mind if I put on some of your washing? Why don't you go have a lie down?

Can you even imagine?

Make-A-Wish Caregiver

Gilles Marini

dedicated to Sandra

I was talking to my friend Sandra last night, checking in on how she's doing. Sandra is the mother of a little boy who contracted a vicious immunological encephalitis when he was two and a half years old that decimated his neurological system. From what I understand, he was a typically developing boy who laughed and played and spoke and ran and jumped, but after a fifteen-month stay in the hospital (yes, 15 MONTHS), he left severely disabled with countless medications as well as an uncertain recovery and future. Sandra, her husband and their son live what I would call an extreme life, where a typical day and night might include battling systems of care and juggling serious medical crises as well as working regular jobs and trying to maintain some sense of normalcy in one's relationships. To people who do extreme parenting, there is often no end in sight. 

I checked in with Sandra because her little boy was going into the hospital again this morning for two surgeries, and I wondered what I could do for her. Sandra has the same sense of humor as I do, which means dark. Very, very dark. I imagine that given the shitty things thrown her family's way, that sense of humor sustains her from madness -- not anger, mind you -- but madness. I don't even think I could do justice to some of the hair-raising stories she has told me -- you'll have to just take me at my word. Madness.

We had a conversation last June about my Brothers and Sisters television show binge, and it was then that she told me about her infatuation with Gilles Marini, the extremely good-looking actor who plays one of the characters on that show. He's so good-looking that when I searched for a photo of him to put up with this post, I didn't even make it extra-large because it seemed almost obscene. When my son Henry began high school, I was excited to share with Sandra the fact that Gilles is a father at the same school, and that I had even sighted him once or twice, most recently at the Christmas tree sale. I know this sounds utterly ridiculous, but I don't care. When you're up all night with a child who is screaming for no apparent reason or waiting to speak to an insurance company for approval of a life-saving medication or juggling the schedules of mediocre nurses who stand you up, or -- god forbid -- trying to do some paid work so you can afford your apartment -- well -- you deserve to hear about your friend's proximity to one of your fantasies. As far as I'm concerned, you can think about or do whatever the hell you want. Whatever gets you through the night, right?

Anywho.

Last night, knowing that there was really nothing I could do to ease Sandra's anxiety or lessen her pain or that of her son, I suggested that I might contact Gilles Marini and ask him whether he'd fly out to the hospital where she's staying and pay her a visit. Sandra said that would make her feel much better, and we laughed like people do online when they don't type LOL (I despise LOL). A few moments later, I had the brilliant idea -- humor my conceited ways, please -- that there should be a Make A Wish Caregiver foundation that granted wishes to the caregivers of ill and disabled children and adults. At this very moment I have three caregiver friends, two of whom are in the hospital with their children for extended stays and one of whom has just left after an extended stay. I have another friend who has been caring for her severely disabled daughter for more than thirty years -- by herself -- and yet another who cares for his young adult daughter by himself. I have countless friends who have been doing this beautiful and extreme caregiving for probably what amounts to hundreds of years if I combined them. Hell, you know from my endless tales here on the old blog that I've been doing the same sort of shit for nearly twenty years! I'm sort of joking about the need for a Make A Wish Caregiver operation -- and sort of not.

Sandra's wish is that Gilles fly out to the hospital where she is bunked down with her recovering son in the PICU. She hopes that he'll give her a tango lesson. Gilles? Are you reading this? Hello?

Readers who are caregivers living the extreme life: what would you wish? Dream big, babies, dream big.

Yesterday with the Poet

I have yet to wake up from this dream because each day dawns and there is something new to marvel over. Heather took me to Butchart Gardens yesterday. They're famous -- world famous -- but I admit to feeling jaded about gardens when she told me where we were going. I live in southern California. I know some pretty wonderful gardens.

Well -- these were some amazing gardens, unlike any that I've ever seen.

Over the top.

Where's Javier? you ask.

Ridiculous, right?

Heather is very beautiful.

Here we are. It would only be cliche to say that Heather not only writes poetry but actually lives it -- her care-giving of caregivers is -- well -- I don't know what to say.

Enough? That picture right above is where the gardens end -- right at the Pacific. Outrageous.

Did I tell you about the food, yet? Heather and I both love it.

What a coincidence (although there are probably no real coincidences --)

We left the gardens sated and tired, but the skies were finally clearing up so she took me to her tiny apartment up in the sky where we looked out over the water, at the snow-topped mountains that had suddenly appeared.

I know, enough. Too much. Uncle.

Are you breathing heavily?

I'll save the ones of me and Javier for another day.

Respite: The Greatest News Ever

via travelwalls.net

If you cup your ear and lean toward the west, you will hear a big ruckus coming from California. If you lean a little further, you will hear some squeals of surprise and pleasure coming from the Southland. If you lean even further and perhaps nearly tip over your chair, you will hear my tiny yet inexhaustible voice nearly shouting with happiness.

You see, I just received word from Caregifted that I am going to Victoria, British Columbia for a seven-day all-expenses paid trip of rest and relaxation.

!!!!!

What more can I say? Heather McHugh, the esteemed poet who also received a MacArthur genius grant, founded Caregifted as a non-profit organization that aims to bring respite in the form of all-expense paid getaways to full-time life-long caregivers of severely disabled family members.

When I applied for the respite week and wrote about my life and history caring for Sophie, I told them that after nearly eighteen years,  a week-long respite specifically awarded for long-time caregivers seemed more like a dream than a reality.

Good grief. I'm near speechless.

Undersung

This moves me powerfully. I know that it will move you as well, particularly if you have been the caretaker of a child with a disability for more than ten years. It is a clip from a documentary, not yet completed, being made by poet Heather McHugh and filmmaker Adam Larsen, "celebrating and giving voice to one of the most 'under-sung' of human communities: long-term, full-time caregivers of disabled family members."



Read more about it here.