Infused with Gratitude and Antibodies

I am so grateful in this moment to hear the steady tick of the intravenous immunoglobulin being infused into Sophie's body. I'm grateful for the gentle ministrations of the home health nurse who has already spilled her life story to me -- a life story very different than mine but I'm open to -- well -- everything. She will be here every day for the next four days and then monthly for the next six months.

I am so grateful for all the support we've gotten in the emails, texts and comments here on the blog and on Facebook over the last couple of weeks in particular. I'm particularly grateful for Christy H, a friend here in Los Angeles whom I never see but who also has a child with special healthcare needs. I got a delivery on Friday from a courier service, opened the large box and found a beautiful note from her and her husband and a bottle of very fancy champagne and a bottle of beautiful rose. This just brought me to tears, to tell you the truth. Here it is next to the hard-won medication that is being infused into Sophie's veins with the hope and expectation that it will help her to recover from the terrible syndrome that has caused Sophie so much suffering. How many folks do you know who have such riches side-by-side in their fridges?

I hope your Sunday has been a good one. May the week ahead be filled with champagne and necessary blood products.

The Green Standard by William Rosenfeld and Jacob Strunk

Help make it happen

for THE GREEN STANDARD and the team!

Not only will we take viewers inside the world of legal marijuana farming and sale, but we will also take an unflinching look at how years of criminalization continue to shape our society – from the patient and provider to the policeman and prisoner. 

via The Green Standard

You don't need me to tell you that the world has seemingly gone mad of late, or madder than usual. I slink around my life looking in corners but not around the bend. I've been waiting for fortune cookie messages to materialize, for a ship to come in or at least pull into port for a spell. I'm waiting on something to inspire me, something to which I can give of myself. My cup runneth over. There are threads on Facebook, on the private closed cannabis groups that spew venom and politics. It doesn't make me crazy, but it makes me tired. I'm a tad tired. Bill Rosenfeld contacted me the other day, though, with energy in his voice. He and a colleague are making a small film, a documentary that might be a big film. Our connections were weird. A friend in the movie industry, a person in Pennsylvania, someone else who reads my blog -- The world is small. I told him that I'd help him to spread the word. So, here's the word. I hope you'll contribute to his campaign in some small way. If you can, do it big. I think what I meant to say is that the world is mad but it's also quite quiet, plodding along in goodness, too.





Here's the link to the campaign and to read more about The Green Standard.

Group Therapy

group therapy on The Bob Newhart Show

Who in the special needs world doesn't hate group therapy at a certain part of the proverbial "journey?" Is there anything worse than listening to people from different tribes drone on and on about their experiences coping with whatever messed up situation has befallen them? Is it just me that would rather hash it out, ad nauseum, only to those in my tribe -- especially when things really fall apart? You know: misery loves company, et al. I'll always remember the zing of recognition I felt when I read People Like That are the Only People Here: Canonical Babbling in Peed-Onk, the great short story by Lorrie Moore that I carried, crumpled in my purse, for many years as I trudged around New York City with Baby Sophie. 

A beginning, an end: there seems to be neither. The whole thing is like a cloud that just lands and everywhere inside it is full of rain.

The first person I met back in those days was my friend Jody whose daughter Lueza had suffered a traumatic brain injury at birth. We participated for a bit in a local support group for mothers of children with severe "issues," but it was our shared sense of dark humor that bound us together. During the dark days pre-internet, it was Jody who told me about a newsletter called "Mothers From Hell" -- a sort of antidote to "Welcome to Holland." She was (and is) the sort of friend who Moore so perfectly described in her short story in one of my favorite passages:

She loves her friends, especially loves them for coming,

since there are times they all fight and don't speak for weeks. Is

this friendship? For now and here, it must do and is, and is, she

swears it is. For one, they never offer impromptu spiritual lectures

about death, how it is part of life, its natural ebb and flow,

how we all must accept that, or other such utterances that make

her want to scratch out some eyes. Like true friends, they take

no hardy or elegant stance loosely choreographed from some

broad perspective. They get right in there and mutter "Jesus

Christ!" and shake their heads. Plus, they are the only people

who not only will laugh at her stupid jokes but offer up stupid

ones of their own. What do you get when you cross Tiny Tim with a

pit bull? A child's illness is a strain on the mind. They know

how to laugh in a fluty, desperate way-unlike the people who

are more her husband's friends and who seem just to deepen

their sorrowful gazes, nodding their heads with Sympathy.

How exiling and estranging are everybody's Sympathetic

Expressions! When anyone laughs, she thinks, Okay! Hooray: a

buddy. In disaster as in show business.

So, I'm back for less than twelve hours, and Sophie is having one of her days. She's already had five giant seizures, and I've had to pull out the Diastat and administer it. She's going to miss her first day of Communicamp, and I'm going to spend the better part of the day probably worrying that this is it, the beginning of the end. That's what I do on days like this, that and laundry.

Pulling through is what people do around here. There is a

kind of bravery in.their lives that isn't bravery at all. It is automatic,

unflinching, a mix of man and machine, consuming and

unquestionable obligation meeting illness move for move in a

giant even-steven game of chess--an unending round of something

that looks like shadowboxing, though between love and

death, which is the shadow? "Everyone admires us for our

courage," says one man. "They have no idea what they're talking

about."

I'm not in a support group, anymore, at least not like the olden days, but I do have you. And you and you. I'm grateful for that.

Take Notes. In the end, you suffer alone. But at the beginning

you suffer with a whole lot of others.

***All excerpts are from Lorrie Moore's short story. You can read the whole thing HERE.

Maggie's World Touching Mine

Two Jewish women, facing each other in Tunisia

Though there are thousands of parents similarly situated, society really does not have a convenient slot for us. We are in between slots. Though the focus of our life is caregiving for our children, we do not really fall into the “stay at home mom” category. But we don't work outside the home so we are not professionals either. We are knowledgeable unlicensed medical providers and social workers.

We are often exhausted and stressed. This is the one category that people apply. Always. Any justifiable complaint or concern we raise is immediately attributed to the stress we are under. Yes, we are under stress, but sometimes - just sometimes – there might be something more. Having someone decide that the stress of my “situation” is the only driving factor in my life disrespects me as a person as well as the hard work I do every day. That disrespect is difficult (or impossible) to tolerate.

This is an except of an excellent, provocative post written by Sally, the mother of Maggie at Maggie's World. As I traipsed around the city today, doing the balancing act of normal and not, her words rang true, strengthening me. Go HERE to read more (and leave a shout-out for Miss Maggie who will be undergoing a procedure, one of countless hospitalizations that she's had to endure).