special needs parenting

Washing the Dust Off

The purpose of art is washing the daily dust off of our souls~Pablo Picasso

After the fiasco of our adventures on Friday I was more than ready for a good day. So, on Sunday afternoon, Husband’s cousin, Miss Sweet Heart, met Man Child, Art Child and I at our apartment and we headed downtown to the Washington Square Outdoor Art Exhibit. Yes, Art Child and I went a few months ago (the show is put on twice a year, Memorial Day weekend and Labor Day weekend) but it’s well worth revisiting. Some of the artists are the same (new work and old) and others were new to us.

Man Child and Miss Sweet Heart haven’t seen each other in a couple of years, so that alone made the day beautiful. Add in a day trip, trains that ran on time, art that is exciting and inspiring, generous artists, and it was damn near perfect. One of the things that made it so special was that several of the artists we chatted with last time remembered Art Child. Made her day, and mine. I’m continually impressed by how many in the art community are willing to take and make time for a young artist, offer ideas and encouragement.

Remember the artist with the amazing tree-woman sculpture last time? Anthony Santella was back with new work. I didn’t think anything could be more perfect than the last bust I posted photos of, but I was mistaken. Last time we saw him at the WSAOE, he gifted Art Child with a nail-studded heart he had carved, it holds a place of honor on her desk. Turns out he blogged about meeting her. Hmm, for some reason the link doesn’t take you directly to the post. From the about page, click on his blog, and then May 2015 in his archives, Sunday, May 24th, Day #144 of #MakeArt365. (Spend time checking out his site, well worth it.) Me, blabberfingers extraordinaire, can’t find the words for how beautiful it is to see my girl in this setting, with adult artists taking her and her work seriously, no one caring (in a good way) about academics, neurological status, sluggish reflexes, size, blah, blah, blah.

Isn’t she wonderful?

Out of budget for us, but oh how I wish.

Looking at the sculpture above got my mind racing, how could I write her into Wanna-Bees, change a character? add a new one? I was about to ask Mr. Santella if he would mind if I “wrote her,” but then I didn’t. I’m just not ready to write.

Besides the wood sculptures, he has paintings and smaller sculptures made from 3-D printing. Art Child purchased one of his paintings from a group he had tucked away, older works. Funny enough, she was drawn to those he made when not much older than she, and still in high school. I bought a little 3D printed woman, maybe 2 1/2 inches with the base. She’s looking down at me from the shelf over my desk now.

The lighting is too harsh in this photo, but it highlights the details.

Tomorrow the craziness of a new school year for the girl will begin. Thank you for letting us wash the dust off, and start fresh.

Sunrise from the terrace this morning.

Mother’s Day Thoughts–Late Again

Flower District

This past weekend was beautiful, whether you celebrated Mother’s Day or not. I talk a lot about the not so nice parts of living in New York, but a nice part is there are always surprises, no matter how long I’ve lived here.

Art Child’s Saturday art class was invited to a small, private gallery in the afternoon. The gallery is in an old, nondescript building on a street I’ve walked down many times, never knew it was there. Surprise! 5 flights of stairs to climb. Bigger, better surprise, there was an elevator. The space itself was interesting to look at, bright, lots of windows, and enough bars and police locks to make me nostalgic for my first couple of apartments.

The show included recent sculptures by Tyrone Mitchell and a variety of traditional African art and artifacts. I forgot to ask if it was ok for me to post photos of Mr. Mitchell’s work, so I won’t, but I will recommend going to see an exhibition if you have the opportunity. Very thought provoking, using found, everyday objects for social commentary. I’m not an artist, don’t know the right words, but there was a piece I didn’t want to leave. On a wooden scaffolding, a pot set into the top, a woven, painted basket decorated with painted money cowrie shells (I have three money cowrie snails eating algae in my tank as I type) coming out of the top of the pot, and coming out of the top of the basket, a mask, a woman’s face. I can’t say why, but something about the whole moved me, and I had a highly inappropriate urge to climb the scaffolding and pick up that basket. No worries, I didn’t touch.

Then I saw a link on Twitter to an article in the New Yorker about the monetization of mommy blogs. For some reason I can’t link it now, sorry. Anyway, my first thought was, really? I haven’t made a dime. Then I remembered, I don’t do anything to try and make money from Mrs Fringe. Second, and more importantly, this isn’t a mommy blog. Sure, I’m the mama, most of that role is fantastic, and I sometimes talk about mama-ing, but that isn’t what Mrs Fringe is about.

I wondered if I should regret this fact. Would it have been smarter, more practical? Maybe, but I don’t regret it. Most of my life is about mama-ing, has been for a long time. I like having this one area for myself as a whole and empty pocketed-person. And I’m guessing the odds of actually making money from a mommy blog are almost as astronomical as any other form of profit from creative writing.

If this were a mommy blog, I would talk about the exhibition in terms of Art Child, the beautiful heartbreak of watching and listening to her experience this show; the opportunity for her to see and touch the artifacts, to speak to the curator, and the joy of seeing her get it in ways that I can’t. She has challenges navigating the everyday world, and by the artist came to speak she was wilting and we needed to leave, but in front of these sculptures she understood their power.

But this is my this-and-that, unfocused eclectic whole person blog. So I talk about the surprise of the gallery itself, hidden in the midst of stores selling rhinestones and questionable perfumes.

Happy Belated Mother’s Day

It Is! Friday.

My week, in a tissue box.

It’s been a long, disjointed week. Art Child has been sick, pneumonia. Yah, good times.

We’ve pretty much been trapped in the apartment. One afternoon, I looked down from the balcony and saw this:

seemed perfect for the mood.

But then yesterday, the light was amazing. Not a sunrise or a sunset, just a beautiful moment.

So I took a long, long shower,

I’ll be honest, I wished I could stay in the steam until next week.

and opened the file with that short story I’ve been staring at for months. “Pigeons.”

I hope everyone has a happy Friday Night Madness. I’ve given you a head start with the madness.

Above, its own page labeled Fiction III will take you there. One of these days I need to reorganize the pages, figure out a better way to lay out the shorts I’ve got here.

Low

One of those days, yanno? Can’t quite get myself going. I’m certain much of it is because I was sure yesterday was Thursday and woke up thinking, “At least it’s Friday.” Surprise for me, it’s only Wednesday.

The girl saw the puzzle doctor yesterday, not so much fun.

Man Child went back to school. We’re going to miss him, but I know he was more than ready. For a last hoorah, he made bear claws with Flower Child.

Why yes, they do taste as good as they look.

One last dinner, I made a stir fry. Actually two, one for the vegetarians and one for the flesh eaters.

In between writing projects, I feel a little bit adrift. This is fine, I’m not ready to start a new WIP (though there is a little seedling of an idea trying to put down roots). It’s good to rest and recharge before getting lost in a new world. The only problem is it leaves me looking around at my real world, noticing the dust on the furniture, the stains in the sinks, and the fucking freezing temperature outside.

I would like something tangible to look forward to. I have to think about what it can be. Something realistic and within my control. Any ideas?

In the meantime, I give you my latest attempt to capture the moon. This batch seemed more fuzzy than the last batch, but I’m fascinated, trying to figure out what the green splotch is.

Is the green thing a star? Planet?

Sorting through the moon photos put this song in my mind, and it doesn’t want to leave. I figure if I post it here, I’ll pass it on.

Official November Post

(as opposed to all those other November posts)

November is Epilepsy Awareness Month. You didn’t remember that from last year? Good thing I’m posting again.

Last weekend when we were up North, I was speaking with someone who used to keep horses, chickens, and goats. I know very little about horses, less about chickens, and less than nothing about goats that doesn’t involve curry recipes. Fainting goats came up. I had never heard of them, asked her about them. As she described how they stiffen and fall over, I thought to myself, sounds like a form of epilepsy, but didn’t say it out loud. I’m pretty sure any animal with a brain can have a seizure. But what do I know about farm animals? I’m not even sure I’ve ever been next to a goat, fainting or otherwise. She then said she believes the fainting is a form of seizure disorder.

Meet Bambi, the Pygmy Fainting Goat (Photo credit: pmarkham)

Well , now I was able to join the conversation. Turns out the woman used to have someone in her life who had epilepsy, and she made a statement to the effect of, well it isn’t like anyone can die from it.

Not true. People can and do die from seizures and epilepsy. Thousands of people. In countries with modern medicine and purple ribbons. There is SUDEP– sudden unexplained death in epilepsy, there are accidents related to seizures (drowning, falling, burning, choking, etc), there is status epilepticus (prolonged seizures that don’t end/resolve on their own), deaths due to treatment, deaths due to underlying disorders if the epilepsy isn’t idiopathic, and suicide related to comorbid conditions like depression.

This woman hadn’t known this information. She didn’t know epilepsy is actually a spectrum of neurological disorders, she didn’t know there are many types of seizures/ways seizures can present themselves. I also think she hadn’t understood that 30% of people with epilepsy are not “well controlled” on their medicines. In other words, they’re doing everything the doctors say to do, taking meds, trying to avoid triggers, and still have uncontrolled seizures.

This was a great opportunity to educate and promote epilepsy awareness. I did, and I think she and the other woman with her were listening. No ribbons (which I don’t think anyone pays attention to anymore anyway, 43,000 disorders and diseases sharing 12 ribbon colors–I made up 43,000–just in case you weren’t sure), no banners, no jazzy PSAs, not even any goats; just an opportunity taken.

*Some, even most, children and adults with epilepsy have seizures that are well controlled on their medication/treatment plan. That doesn’t mean epilepsy is “no big deal.” It can be a very big deal. And you should care, because anyone can have a seizure, anyone can develop epilepsy.

What medicine(s) works for one person doesn’t necessarily work for the next. Whether they work or not, they often have horrendous and lasting side effects. Some people are finding tremendous success right now with certain medical cannabis compounds/cannabinoid. I’m guessing it’s like the other meds/treatment options, it will work for some and won’t work for others. Of course, everyone who wants to have that shot of success will have to be belittled and inspected first, forced to fight their governments and maybe even move. Sigh.

EEG fragment (Photo credit: Wikipedia)

But that’s another post.

And by the way, if your dog (or your goat) has epilepsy, and you’re speaking to someone whose child has epilepsy, don’t tell them you know just what it’s like. You don’t.

Epilepsy Awareness. Epilepsy Sucks, pass it on.

Things That Go Bump in the Day

Jack-o-lantern (Photo credit: Wikipedia)

We love Halloween. Well, I’m not sure if Husband really loves it, but the rest of us here in Fringeland do, so he smiles along. Man Child has been Jack Skellington twice, all three of my kiddos knew all the lyrics to the soundtrack of the Nightmare Before Christmas before they knew their ABCs. This afternoon there’s going to be a party in my building for the kiddos. A nice idea, and so I went out early this morning to hit the grocery store. I saw a meme thingie on Facebook for mummy-hot dogs, what a great idea! Easy, not too pricey, something in addition to candy to eat. OK, I’m using tofu dogs, but still. My sweetie is really looking forward to this. I’m not sure why, but the Halloween oogie boogies, ghosts, vampires, and banshees don’t bother her at all. (no gore though, please)

You don’t get the house to house trooping through dusk here in the city, we do vertical trick or treating, for the most part. This has its advantages, no worries about your little superhero freezing in a costume.

I didn’t leave early enough. The train reeked of young adults on their way home (subway of shame?) with last night’s booze steaming from their pores. Cold outside, hot in the tunnels, lots of vodka sweat.

20101009 1818 – NYC – subway – tunnels – IMG_2309 (Photo credit: Rev. Xanatos Satanicos Bombasticos (ClintJCL))

Then the store was packed. I was on line longer than it took me to finish my shopping–on both floors!

Fine. I get back to my neighborhood and decide to stop in to the temporary Halloween store before going home. Meant I was lugging groceries, but didn’t have Flower Child with me. Sounds mean, doesn’t it? I mean, here I am, going into the store to get make-up for her costume, but preferred to do so without her. Bad, bad mama. Practical mama, too. Flower Child cannot make decisions. I don’t know why or what misfiring synapses cause this, but she can’t decide. Ever. On anything. So something like standing in front of a wall of makeup to decide which tubes of face paint could take two hours–and result in both of us needing to go home and crash–screw the mummies, let those other kids eat candy corn. But I’m being a good mama today, damn it! Supporting creative costumes! Buying ghoulish makeup! Supplying tofu mummies! So I went without her.

Great! Except now I’m looking at a wall of theatrical makeup, trying to decide what looks easiest to apply, wash off, most versatile, trying to fit into the budget. Halloween costumes have come a LONG way since I was a kid. I know, it’s hard to believe, but I was once a kid. Wore my mother’s gold hoop earrings, red lipstick from my grandma, and a black nylon blouse from my mother’s closet–voila! A gypsy! I’m sorry, it was long before the idea of gypsies being politically incorrect for a Halloween costume hit Brooklyn. Anyway, here I was and somehow, I ended up one too-rapid breath from a full blown panic attack in the store. What. The. Fuck.

I’ve had panic attacks before, but not in years. Years and years. Multiple children and lifetimes ago. A tube of gray face paint had caught my eye. The exact shade of gray I’ve seen on Flower Child too many times during seizures. I don’t know what happened, I really don’t. I mean, I know, it’s scary shit watching your kiddo turn colors human beings were never meant to be, hearing a shriek like no other as the air is pushed out of their lungs, watching them stop breathing, feeling completely powerless, wondering if this will end quickly or be one of the ones that goes on and on until you’re in the ER reporting the sequence of events to the 18th doctor. But it’s Halloween! Fun scary, not mama’s flipping her lid for absolutely no reason whatsoever scary.

Flower Child was fine when I left, fine when I got home. She’s happily playing with the makeup I grabbed. I didn’t buy the gray.

Today

I went here

and my head exploded at seeing the ride on mower in the quiet zone.

and my head exploded at seeing the mower in the quiet zone.

And I wore this

Turtle.

And I brought these

Green for turtles, green for mitochondrial disorders.

And then I did this

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When I arrived, there was a homeless man playing guitar next to the Imagine mosaic. There’s always someone there singing and or playing. But usually, they’re singing Imagine. Today, as I walked past, he was playing and singing Let It Be, the song Nerd Child played and sang at my mother’s funeral.

I did this in honor of an exceptionally brave little warrior. Friends across the country released balloons or planted bulbs to show support, respect, love, and mourn with a friend when we couldn’t be with her in person.

While I was in Strawberry Fields releasing balloons; a friend, along with her husband and her daughter, was laying her six year old son to rest many miles away. Too soon, too short, too heartbreaking. Mitochondrial disease is something that most people have never heard of, but those who know it, know it all too well. It’s an umbrella term, the name covering many sub-disorders, but all affect multiple systems of the body. The mitochondria are the powerhouses of the cells, bringing oxygen, converting food to fuel and energy. Some forms of mito disease are more aggressive than others, and different people are affected to varying degrees. There is no cure, not much in the way of treatment, and understanding of mito diseases is really in its infancy.

I’ve never met this friend in person, never met her son, but I know her, knew him, wept for every setback and cheered for every discharge from the hospital. I’ve already blogged about online friendships, how very real many of them are. But some have a depth I have no words for. Medical needs moms, special needs moms, the communities and friendships developed are invaluable and indescribable.

Mito sucks, epilepsy sucks, cystic fibrosis sucks, cancer sucks, neuro-transmitter disorders suck, von willebrand’s disease sucks, CDKL 5 sucks, all the assorted disorders rare and otherwise that most-people-can’t-even-name-the-color-of-the-ribbon suck. But the friendships, the support? Beautiful, pure, sometimes gut wrenching and always filled with love.

Rest in peace, sweet boy.

Where Are My Damned Marbles?

Marbles…. (Photo credit: kevinjay.)

I seem to have misplaced a few of mine. Ok, most of them. Have any to spare?

Here I sit, twitching. Is it because I’m pitching my manuscript on Twitter today, or the unreasonable quantity of espresso I’ve already consumed?

And just what am I doing on Twitter, anyway? I should be wearing purple and making dates with ladies who lunch. Shouldn’t I? I tendered my resignation to Hope a while back, so what is all this? I keep saying I give up, I accept my small life, my downward mobility. And yet, I keep writing. And trying. Not just querying, but things like this twitter pitch event.

Several months ago I saw a new lit mag being formed, looking for submissions for their debut issue. Reputable names involved, and the theme for the issue seemed perfect for a story I had in the files. Dusted it off, polished it up, submitted. Said lit mag seems to have disappeared into a black hole of cyberspace.

When we moved into our current apartment, I did so with the understanding I’ll be here until I have the big one, join ‘Lizabeth, and Husband slides my stiff cold body down the compactor chute. Funerals are so expensive, they’ve got to be bourgeois by now. I’d best stop gaining weight, it’s a narrow opening. So how come I keep watching HGTV, and studying real estate websites?

moon rises over the crumbling sand castle (Photo credit: sandcastlematt)

A long long time ago, in a land of hope and extreme gas shortages, there was a movie titled The End, starring Burt Reynolds and Dom DeLuise. It was a black comedy about a man (BR) trying to kill himself, who keeps screwing up, aided by a delusional mental patient (DD). Yeah, so I feel like the Reynolds character. If I had a cavity I’d probably be sucking down an ice cold milkshake. I’m supposed to have stopped this nonsense by now.

I’m a mother of three. Special needs/Medical Needs, plain old Growing Up Needs, they are my priority. That’s supposed to be enough, knowing I’ve done/am doing my best to raise three well adjusted, responsible people.

Husband is off today. Flower Child keeps hoping to see me packing the beach bag every time I get up. “Is Daddy off? Why is he dressed? Why aren’t you dressed? Are we going to the beach? Why is it clouds today? Why does it matter how many times you Twitter? Do you have an agent yet? Are we going to the beach?” But I’m glued to Twitter for the day.

I’m well aware of priorities, well aware of *what’s really important.* Health and well being of children, important. Mom’s dreams? Much further down the list. I should be crossing them off. Should have crossed them off long ago. I thought I did. I think it must be some kind of gag ink, those irritating fantasies of me-as-a-person keep reappearing.

My Year in Lists (Photo credit: Wikipedia)

1001 Questions of Mamaing

Happy Saturday, Fringelings!

It’s been an exhausting week for me, lots of ups and downs, how about you? Two highlights. One, Nerd Child is home for the summer, hooray! It was a seventeen hour day yesterday, much of it spent driving in torrential rains that seemed to call for an ark, but he’s home.

What’s the other highlight? SnapinTime, from The Voice from the Backseat very generously donated her limited time to watermarking some of my photos of Flower Child’s artwork, so I could share it here. Thank you, Snapin!

I love looking at art, and so does Flower Child. We’ve spent quite a bit of time in museums together. My sweetie has a real talent. It’s newly discovered, or perhaps it would be better stated to say newly unlocked. I can’t say why, for sure, but it emerged after receiving an iPad to use for schoolwork. Is it the preservation of energy (a precious and finite resource)? Excessive fatigue is one of the most, if not the most, debilitating features of her struggles. I don’t know, but as a mama who watches her struggle with so much–yet she always holds on to the positive–and as a person who is hard pressed to draw a stick figure, this work makes me weep, literally.

: angel

: truncated tree, with color

: dog and bird on a branch

: tree

: woman sleeping

: branch and moon

: Nerd Child

: woman with dreds

Flower Child is indeed, special. Her thoughts take twists and turns that can be difficult to follow, and clarity is connected to how she’s feeling physically. The drawing of the dog and bird looks like it was done by a different person, no? This was a work she produced last weekend, when she was unwell and “crashing,” as we call it, for lack of a better word. Not completely crashed, because then she’s hard pressed to hold a pencil. After several hours of rest, sleep, and her evening meds, she produced “woman with dreds.”

I’m hoping to figure out a way to get her art lessons this summer. We need someone who will be flexible and ok with these inconsistencies, and sympathetic to the &*$#% budget.

Braggage: Warning, Sap Ahead

No Whining (Photo credit: bepositivelyfit)

I do quite a bit of whining here, if you hadn’t noticed. I happily tell you I’ve got plenty to whine about. It’s a life, like anyone else’s, and I’ve got a few bright spots too. The beauty of a novel that makes me cry because I’ll never write anything as masterful, getting to know a new friend, writing a story, a scene, a sentence I’m proud of, the mango I cut open this morning that was absolutely perfect.

But most braggage centers around my children. I’m broke, overcrowded, overtired and frustrated, but in so many ways I hit the lottery when it comes to my kids. They’re good people, all three of them.

Man Child isn’t coming home for the summer. I miss him like crazy, but he has a wonderful job opportunity–one that came from his hard work. the good impression he makes on others, and the fact that he has proven himself to be trustworthy and a hard worker.

Nerd Child comes home next week. I’m a lot more excited about this than he is. The fancy shmancy school he attends has turned out to be a perfect fit for him. Yesterday he called and told me he won an award for character and leadership.

Earth (Photo credit: tonynetone)

Flower Child couldn’t be sweeter than she is. She cares about the world and all of the people in it, honestly confused as to why people ever do harmful things to each other and the earth.

I woke up thinking about this stuff, feeling okay. Summer has arrived here in NY, ooh, bliss of a comfy old summer dress and flip flops. I even decided to spend a few hours pretending if I spent long enough Googling, I’d figure out how we’d be able to move to a beach town where we could afford a house, find employment, and have good health care for Flower Child.

Lily Tomlin (Photo credit: Larry He’s So Fine)

Instead of knock knock, my reality announces itself with a ring. First, my pharmacist called. Yes indeed, we have a close enough relationship that he called to say hey Mrs F, it’s Pharmacist, I’ve got a Led Zeppelin CD here for you that you and Husband are going to love. Ring ring, hi Mrs Fringe, it’s pediatrician’s office, the second round of paperwork for Nerd Child’s summer program is here for you to pick up. Yah, great, thank you so much, I’ll be there. First I’m going to try to finish the edits I’ve been trying to get through. Ring ring, Mrs Fringe? This is super special futuristic lab doing the next round of genetic testing the puzzle doctor ordered, we need your credit card information before we start running any of the tests. Fringelings, I can’t tell you how I love hearing other writers smugly announce that if writing is truly important to you, you can and do make time every day. Ring ring, Mrs Fringe, this is Puzzle Doctor’s office to confirm Flower Child’s appointment for next week. That appointment was canceled. No, you’re still on the schedule. It was supposed to be canceled. Well, we’ll have to speak with Puzzle Dr assistant and find out, I’ll call you back, ok, Mrs F? Sure.

Flower Child wasn’t feeling well this afternoon/evening. Not feeling well in a way that makes me nervous, but not a crisis. I was supposed to meet Fatigue, Husband was home, I was only going across the street for an hour…so I did. The day started out so promising, damn it–I wanted that feeling back! If you were wondering, the nectar of the gods is a cold glass of gin and lemonade. Until the stranger sitting next to you begins eating your french fries. Then it’s just time to give up. It’s a life, and tomorrow is another day.