special needs parenting

Cuddling With that Late Night Booty Call: Want

Deutsch: Irische Hard Shoes, auch Hornpipe Shoes oder Jig Shoes genannt. Jig Shoes. (Photo credit: Wikipedia)

*Warning: Defensive post ahead.

Yesterday afternoon, I walked past a favorite shoe store, recently renovated so the ambiance matches the price points. In the window was an absolute wantwantwant Pas de Rouge shoe. So much so, I took a picture with a phone, posted it to my personal Facebook wall, and had fun with friends dreaming about $400 shoes. (for some reason I can’t transfer pics from my phone to this blog, sorry) Fun? Yes. Silly? Absolutely. But there’s something about a sole full of awesomeness that some roundheels like myself can’t deny. Resist, sure, but not deny.

But here’s what I’m thinking about today. We’re expected to deny our wants. As women, certainly as women with children, we’re supposed to forget about our pesky little wants, dreams, and desires, at least until all children our grown and gone. I’m not talking about ridiculously expensive shoes, but the other stuff. Like writing, or painting, or photography (except of our children), or going back to school, or a vacation that isn’t educational. Even hobbies are relegated to after the kids are asleep. You know what? After the kids are grown and gone is a long, long time. Add in a special needs child and multiply this by eleventy billion.

A newborn child crying. (Photo credit: Wikipedia)

It doesn’t seem so long at first, when they’re babies, toddlers, and young children, and your days meld together with feeding and changing, soothing and crooning. Hell, just looking at this photo makes my boobs tingle, preparing for a non existent milk letdown, and it’s been years since I nursed.

My belief that children come first is strong. Most of us deny ourselves a lot of wants, put off needs, because the kids come first. It’s what our biology and our society dictates; in my opinion this is as it should be. I know it isn’t just women who put certain wants off until the kids are grown, most of us, male and female, are on limited budgets, and many of us have to either give up or put dreams aside until the immediate responsibilities are fewer. Being last is okay, as long as I’m still in the race.

But since I began blogging about my newly rediscovered determination to get back to a regular writing and submitting schedule, more than a couple of my female followers have made reference (both on and off the blog) to wanting to do X, and waiting to do X until the kids are gone. Feel free to jump in and tell me you’ve heard otherwise, I’ve never heard a man say he’s waiting to investigate and pursue a hobby until the kids are gone. When I read the stories of writers who have been successful after having children, but before the kids are gone, they’re a little different. Both male and female showed tremendous drive, dedication, and passion. The men talk about coming home from their day jobs, locking themselves in whatever little nook they can carve out for themselves in their home, and writing. Women talk about coming home from their day jobs, supervising homework, making dinner, doing the bedtime thing, and then going to whatever nook they’ve carved out for themselves. Or, if they were SAHMs, writing during naps and loads of laundry. And of course, eating all those bon bons. Who needs sleep, right?

I don’t know about you, but when I sleep and dream, it isn’t about juicy younger men or my formerly perky parts. It’s about space and time for myself that isn’t shrouded in guilt.

English: A photograph of an engraving in The Writings of Charles Dickens volume 4, Oliver Twist, titled “Oliver at Mrs. Maylie’s Door”. (Photo credit: Wikipedia)

I think it’s valid, sensible, and important to recognize the difference between wants and needs, and then further breakdown to prioritize these needs and wants. What I don’t get is why this is supposed to equal no wants or dreams. I’ve said it before and I’ll say it again, I recognize that I live in this spoiled American society and I am a spoiled American. I don’t have a McMansion and don’t want one. I also don’t want to live in a hut, with just enough grains of rice to keep me going, foraged Pepsi bottles strapped to my feet with woven grass. I hear those are terrible for dog walking.

Rompe La Cabeza

Question mark made of puzzle pieces (Photo credit: Horia Varlan)

In English, the word is puzzle. In Spanish, the phrase is rompe la cabeza, or rompecabeza. Translated literally, “breaks the head.”

Flower Child is my puzzle. A beautiful, delicate, complicated puzzle. For now, and for far too many years already, trying to put these pieces together…the Spanish feels more appropriate than the English. Breaking my head, trying to make sense of what is and what’s to come for my sweetness. The modern medical world is an absolute maze; so basically, it’s wandering through a labyrinth, trying to locate puzzle pieces, and then getting lost in an attempt to trace back to see where they might fit.

I used to like jigsaw puzzles. I found them relaxing. I had a teacher who used to call those types of hobbies mental masturbation. Made sense. But now? No, the very sight of those stamped cardboard pieces induces a PTSD type reaction.

English: Image from The Great War taken in an Australian Advanced Dressing Station near Ypres in 1917. The wounded soldier in the lower left of the photo has a dazed, thousand-yard stare – a frequent symptom of “shell-shock”. (Photo credit: Wikipedia)

Except for one teeny tiny contradiction, it isn’t “post” anything. I live it, we as a family live it, every day.

This morning I didn’t get up at 5AM and work on a story, or Mrs Fringe. This morning I got up at 5 to go over paperwork and organize copies of medical reports. Another visit to a new specialist, this one specializing in the puzzle pieces that make up each of us. Three hours of going over medical history–Flower Child, me, Husband, Nerd Child, Man Child, and extended families. If you’ve never had the pleasure, it’s the emotional equivalent of sucking down a chocolate milkshake when you’ve got a molar in dire need of a root canal. A quick physical, looking, bending, measuring, hemming, hawing, instructing, and note taking. Then a trip down to the lab, and 80 reminders to FC about “girl power” while waiting for a blood draw, and of course, the positioning of the doll, the iPod, and the negotiating about what the treat will be afterwards.

The testing least likely to yield information is expected first, in three to four weeks. The rest of the results should be back in four months. Follow up appointment in six months. An extra vial of blood was drawn, in case nothing useful is found in the testing done today, it will be used for round two of more detailed testing, taking another 6 months for results. Now we play the hurry up and wait game.

Sundial (Photo credit: njj4)

Picture Day

vintage class photo, 1957 (Photo credit: deflam)

Yesterday, detangling Flower Child’s hair.

Mrs Fringe, “Tomorrow is picture day, so let’s make a little extra effort, and you have to pick an outfit that you want to take a picture in.”

Flower Child, “No it isn’t. It’s De-cem-BER. Picture day is October 30th.”

Mrs F, “It was supposed to be October 30th, but there was no school that day because of the hurricane. So picture day was rescheduled for tomorrow, December 3rd.”

FC, “The paper said October 30th. I read it.” *preens*

Mrs F, “October 30th has passed. It was the day before Halloween. We’ve been through all of November, and now it’s December. Picture day is tomorrow. Do you want to wear the dress you wore for Thanksgiving?”

FC, clearly not believing me, “OK.”

This morning, getting ready.

Mrs Fringe, “Remember, it’s picture day. I’m filling out the paper for school, please give the envelope to the teacher.”

FC, “Umm, ohhhh,” rubs her stomach.

Mrs F, “Are you sick?”

FC, “No. Maybe. I don’t think so. It’s October 30th?”

Mrs F, “No, it’s picture day.”

We keep getting ready, Flower Child alternating between fighting nervous smiles, tearing up, and ummming. I sit down on the couch with her, finally figuring out she doesn’t want to wear the dress she’s already wearing.

I’ve already filled out the form and sealed the envelope. She picks a different outfit. Polka dot little too short skirt. Striped too big shirt. Sparkly tights. Mismatched socks. Early bag lady, but she’s smiling. I like to think she’ll smile when they take the picture, but if I was laying money down, I’d have to bet she’ll be giving her very best “smeyes,” a la Tyra Banks. Going to look fab against the fake flowering tree background.

The Cheshire Cat (Photo credit: Wild Guru Larry)

Once Upon A Time

fairy tale pic (Photo credit: Kjirstin)

In a land in which no one ever expects to reside, there were two little girls, born just days apart. One called The Empress, and one called La Princesa. The two girls didn’t live close to each other, and each was busy with the business of their kingdoms, learning to talk, and eat, pester their respective older brothers, and throw royal panties out the tower window.

One day, the beat in The Empress’s brain began to count out a new and unusual rhythm. Not long after, La Princesa’s brain also began keeping a new rhythm. Suddenly, each kingdom was regularly experiencing strange and terrible lightning storms. Healers were called and many potions were tried, but still, the storms persisted. La Princesa’s mother and The Empress’s mother each sent carrier pigeons with messages for the new world, called The Internet, hoping to find others who had battled these storms and defeated them; or at least knew how to protect their families while the storms raged.

Many Queens formed a Great Alliance, loaning each other shields of understanding and swords of knowledge. Many only stayed for a time, but the most weather beaten grew powerful and remained, through storms and strange beats, through potions that offered relief and those that were poison, helping each other to laugh and dance, when they were rooted, shin deep in muck.

Image of a letter sent by carrier pigeon (Photo credit: Wikipedia)

The Empress’s Queen and La Princesa’s Queen began noticing they were sending out very similar messages. Soon, they began sending messages directly to each other, in addition to the ones they were sending and reading from the other Queens of The Great Internet. La Princesa and The Empress had both begun their lives small but mighty. Years passed, they remained small, but each began having periods of weakness, succumbing to the vapors as if the castle mice were stealing their feasts. Queen Empress and Queen Princesa realized not all of the other Queens with stormy kingdoms had such enchanted mice. They compared tales of storms and threats and events and spells, and the crumbling walls and general disrepair of their castles, moats leaking sewage into their grand halls. Potions and Healers and Seers were exhausting their riches. They whispered prayers carried by the wind. Still, their golden girls’ spirits were powerful.

Each Queen traveled to new seers, seeking answers and resolution. The Empress met a powerful seer, who offered answers, though no resolution. La Princesa’s Queen continues the quest. As the two Queens formed a stronger bond, and their pigeons knew the way to each kingdom without thought, La Princesa and Empress began to recognize the birds from each other’s lands. With their Queens’ help, they began sending messages to each other.

Each girl learned she had much in common with the other. Neither girl was bothered by asking or answering the same questions several times. Neither girl used unkind words about the other. All the kingdoms around were struck by a terrible storm, and the carrier pigeons couldn’t fly. La Princesa worried about The Empress, and The Empress worried about La Princesa.

One day, a special dove brought a great gift for La Princesa. It was a colorful drawing– rendered by The Empress– of the two friends and told the tale of their friendship. This treasure was so special La Princesa couldn’t speak, but her smile…her smile brightened her sleepy eyes and the gloomy day, casting a glow over the Queen’s eyes, making them leak in that way she hated! but she couldn’t see the cracks of the castle walls or the dusty cornices. She saw the pink streaks behind the gray clouds, and the miracle of the bird’s wings against the sky as he soared back towards the land of The Empress.

Fairy Tale … (Photo credit: lapidim)

Nothing Much

Yawning Galapagos Tortoise (Photo credit: Jen Bowman)

One of these days that’s going to be me. I’ll run into a friend I haven’t seen in a while and she’ll say, “Hey, Mrs Fringe, what’s been going on?”

I’ll answer, “Nothing much.” And mean it. No discretion, no walking away sniffling, just a nice boring stretch.

Maybe my next life.

Yesterday morning, right before Nerd Child had to leave to go back to school, Old Senile Dog began making some strange noises. Coughing and retching. Ok, sucks, but dogs get sick, pet him a little to try and relax him. No. Because it progressed to throwing up nothing but foam, bile and weirdness, and his back end kept giving out. And the sound he was making was eerily similar to a death rattle. Freak out time!

Call the vet, a hurried and distracted goodbye to Nerd Child, half walk, half carry the dog to the vet’s office on the next block. He looked bad. Really bad. I knew it wasn’t just my perception when the woman sitting with her Shitzu shoved her little bundle back into its carry bag and inched away. Another woman waiting at the counter brought the paperwork and pen over to me, so I wouldn’t have to try and move him any more than necessary. Tech came out and brought him into the back right away.

The vet comes out, I go over the symptoms, how long, etc, and now I’m noticing how reassuring she isn’t being. Calm, lovely, efficient, but no hint of “don’t worry, he’s going to be ok.” This taps into my inner loon, I can barely remember and articulate what he gets fed, and I just keep repeating over and over, “Is he in pain? I don’t want him in pain, don’t let him be in pain!”

She takes half a step back, lies and tells me he isn’t in pain, and I accept this because I want it to be true. I call Fatigue, and babble about what the vet said.

Bloat with twisted intestine, emergency surgery needed, maybe a mass caused it, maybe they’ll find necrosed tissue of the stomach and or spleen by the time the surgeon opens him. Much quiet drama throughout the day, Little Incredibly Dumb dog is beside herself, barely left his bed since I left with him. Flower Child wasn’t much different.

Oh yeah. Flower Child. I don’t know if I’ve talked about it here, but Big Senile Dog is more than a beloved pet. He works as Flower Child’s aid/service dog. Completely untrained for this, he was already our pet when FC first started having seizures and other fun. He has been amazing. He alerts for seizures, he alerts if she is at all unwell and I’m not right there.

Oh, I’ll let you in, but I won’t let you out. ~Big Senile Dog

He sees her as his job, no one is allowed to get close to her if he doesn’t know them and trust them. When her seizures cause loss of consciousness, if I don’t already have her on the couch or bed, he places himself so she lands on him and not the ground. He isn’t perfect, he tends to be overprotective of her. He works for her, but has zero interest in cuddling or being cuddled by her. He won’t play with her, that would be beneath him. If she needed him and a tempting steak walked by, he’d bay for my attention and then go grab the steak, going back to her only after said steak was eaten. On the bright side this would take him about 0.04 seconds.

He’s a pest. He can jump seven feet straight up into the air to leap a fence, grab a chicken, or put his face into the face of someone he doesn’t think should be too close to his family. One year we went on vacation, and Sister In Law, whom he adores, took care of him. She took him to doggie day care while she went to work so he wouldn’t be lonely. He jumped the fence in their backyard, and waited there until she returned at the end of the day, howling only once he heard her voice. He cries and bays if I walk away from him at any time for any reason when out in the street, even if it’s Husband holding his leash. He howls and bays if we’re all outside, to warn the world that his charges are coming through and they’d best move out of the way. But he’s our pest, and we love him, adore him, and the work he does for Flower Child is priceless.

The surgeon called last night, the surgery went well. YAY! No mass, no resection of his stomach needed. Double YAY! This leaves the odds in his favor for a full recovery.

Snoopy_happy_dance_large (Photo credit: imjkbryant)

This morning, I take Flower Child to school, and wait for the vet to call. This afternoon, I will pick her up early, and take her to an appointment with Dr BigShot. Nothing much.

Merry Epilepsy!

Mercury EEG (Photo credit: Max ☢)

It’s always somebody’s awareness day, week, or month, right? November is Epilepsy Awareness month. If you’ve noticed purple ribbons, or purple in general, showing up in icons on Facebook over the past few days, that’s why.

Seizures and epilepsy are part of my little corner of Fringeland. I believe awareness is particularly important to epilepsy, and people with epilepsy, because there’s such a long history of stigma attached, so much misinformation. There are those who still believe it’s the mark of Satan. Hell, years ago, when Flower Child was diagnosed, I received phone calls from well intentioned relatives telling me if I would just pray harder….The fact is, seizures are a misfiring in the brain, and how much of the brain gets involved and where determines the presentation of the seizure; in other words, what you see. Anyone can have a seizure. A diagnosis of epilepsy is usually made when there are two or more unprovoked seizures.

To give a short but clear idea, I’ll just say Flower Child had a favorite EEG technician long before she had a favorite teacher.

Flower Child doesn’t quite “get” the concept behind awareness, but she knows she’s got a great reason to wear purple every day, and has noticed all the purple icons popping up when looking over my shoulder. Being an excellent advocate, she’s letting everyone know. Sort of. In her mind, it’s kind of like letting people know it’s her birthday, or wishing people a Merry Christmas. She also likes to use weighty words, though their definitions get confused in her mind.

Their Purple Moment (Photo credit: Wikipedia)

So you know she makes sure to tell everyone on the elevator, and in the store (before fatigue brought her down for the day and she wasn’t telling anyone anything), “It’s Epilepsy Appreciation Month! You should wear purple!”

Lots of elderly people in my building, losing their hearing, they all assume they’re hearing her incorrectly if they did in fact hear her words clearly. One wished her a happy birthday. Several others look at me to “translate.” I do, and they do a double take, “Oh, well, umm, thanks for telling me.”

The reality is, my world is pretty small. Most of it is quite tedious. If it wasn’t, I might not feel such a drive to write fiction, and create imaginary worlds. And yet, somehow every day is an adventure.

I’ll leave you with just a few facts:

-Never ever put anything in the mouth of someone having a seizure, you risk injury to yourself and to them.

-Epilepsy is a spectrum of neurological disorders.

-70% of people with epilepsy are well controlled by medications. That means 30% aren’t.

-About 50,000 people die in the US each year from epilepsy. Yes, epilepsy. That’s more than breast cancer, more than skin cancer, more than drunk driving accidents.

-A seizure isn’t always obvious to a casual observer. Tonic clonics, or what used to be called “grand mals” are only one type of seizure.

Epilepsy Awareness Ribbon (Photo credit: Cynr)

Splitting Hairs

I need a haircut. In my mind, I look like this:

Nichols as Lieutenant Uhura. (Photo credit: Wikipedia)

But the mirror shows more like this:

The famous tongue image (Photo credit: Wikipedia)

I’ve been thinking (read, moaning and groaning to Husband) I need a haircut for about a month now. I know it’s true, because when I walked into Mother-In-Law’s apartment yesterday afternoon, she asked if Flower Child had done my hair for me.

I like to look presentable but I run into several obstacles. 1) I hate looking in the mirror. Truly, I’d rather have the Evil Queen’s mirror (Snow White) than the bitch harping on me from mine.

2) I don’t enjoy going for haircuts, or anything else that involves strangers touching me. Yes, I’m uptight. Accept it, I have.

3) The ever-looming budget. I can get my hair cut next week, but that means I have to skip Friday Night Madness this week. Not a tragedy or a hardship, but a bummer. Even in my broke and Fringe life, I recognize this as a first world obstacle.

4) I haven’t had a haircut in five years that wasn’t interrupted by the school nurse, calling to tell me Flower Child was sick or seizing or both. I haven’t received a phone call from the nurse yet this year, I’d like to stretch this as long as I can.

I don’t dye my hair, it’s salt and pepper and yes, I like it this way. But thanks for giving your best guesstimate on how much younger I’d look and you’d feel if I dyed it. I spend about two weeks googling hairstyles for gray hair before I go. Why? I see the same three images, regardless of year, season, or current styles.

English: Actress Jamie Lee Curtis autographs her books for children in Building 150 at Joint Base Pearl Harbor-Hickam, Hawaii, April 1, 2010. (Photo credit: Wikipedia)

Paula Deen holds court (Photo credit: Bristol Motor Speedway & Dragway)

Cruella (Photo credit: KerriNikolePhotography)

Ok, I made up the Cruella one, Emmylou Harris is usually the third photo to pop up. Maybe I should go for Cruella this year. It might just satisfy Mirror.

Ch ch ch ch

…gonna have to be a different man.

English: David Bowie in the early 1970s (Photo credit: Wikipedia)

Or a different woman, as the case may be. Continuing to think about my scheduling challenges, and how so much of that blasted to-do list is bullshit. Yeah, yeah the laundry has to be done. But for the love of God, I need…something. A change that’s more than a new coif–though I could use that, too.

A friend advised me to focus in on a specific goal. Logical. But what? And where is the line between reality and excuses? I love the idea, the fantasy, of reinventing myself. But it feels squishy, new age-y. Not to mention suspiciously like the 21st century equivalent of a middle aged man buying a convertible. Impractical. Yes, circumstances have changed. Man Child and Nerd Child each have a foot out the door. Husband has an AARP card. But the nest isn’t empty and isn’t likely to be. I don’t have degrees or the freedom to commit set hours each week to an entry level job.

And the ghosts of old choices, born of circumstance and poor judgement.

Der Poltergeist (Photo credit: Lab604)

More than ghosts, they’re poltergeists. I think, I ramble, I do laundry, I time seizures, I write, I walk dogs. I excel at navel gazing. Which of these are likely to be capitalized upon? That’s what I thought.

I wasn’t born with a silver spoon; I wasn’t raised in a war torn and poverty filled hovel where I never saw anything different. Somehow, along with too many others of my generation, I’ve been caught in a spiral of downward mobility. I don’t want to be stuck. I don’t want to be desperate. I also don’t want to be hungry. But right now, I am. Starving for something.

I know how to get by, stretch a budget, do what needs to be done. What I don’t know is how to make major changes, how to truly divert my trajectory while still taking care of my current and forever responsibilities, the human beings in my little fringe world that give my life value. Because while I want to feel there is a “me,” it isn’t all about me, and I don’t want it to be. How lonely, how boring, how bitter.

I’m sitting on my little terrace right now, looking at the herbs and flowers I planted with Flower Child back in May. And I’m wondering, worrying. If I figure out a focus, replant myself; will my roots take hold in new soil? Or are they already too brittle; like the first basil plant we tried, attacked by the pigeons before it could adjust.

Dead Basil (Photo credit: olaeinang)

Waiting For Godot

‘Waiting For Godot’ (Photo credit: dave lewis 88)

That’s me, waiting for Dr Big Shot, or the on-call working with him, to call back. Flower Child was not better this morning.

The last couple of hours, though, have brought some improvement. Mrs Fringe is a tired Mama.

Luckily I ran into a neighbor when I was on my way to the laundry room with the puked on blankets; she was quick to tell me of the evils that will surely befall me if I don’t sign the petition to block the increase of SROs in the neighborhood. Too beat to make much of a case, I just told her I think it’s a complicated issue, and the people in question need support. She was quick to agree, and told me it’s too expensive for them here, they should go somewhere else instead– somewhere less populated. Like Wisconsin. Or Brooklyn. Still shaking my head.

Shall I Toss You Off of the Terrace Now?

March0806 012 (Photo credit: ShellyS)

You would think that was the question when I asked Flower Child what she wanted for breakfast this morning. In Mrs. Fringe’s little world, this is a bad sign. She almost always wants breakfast, even if she has no intention of eating it, she likes to know it’s there at her spot; her morning routine no matter what the day brings.

Today she’s sick. We had our last beach hoorah yesterday, and it was a beautiful day. The waves weren’t too strong, just enough to make it fun. The sun was strong but the breeze was constant. She was listless within 45 seconds of heading home, asleep within 5 minutes once we arrived. This morning she’s my little puddle on the couch. The joys of medical needs parenting. Neuro crud, ptosis (connected to neuro crud), fever, that faint but definitive gray tinge to her skin, holding my breath to see if this is “just” a cold or virus.

I hope so, and sometimes it is. Other times, for no known reason, it turns into strange flus, pleurisy, pneumonia.

I’m a mom, first and foremost. I’m also a (wannabe) writer, wife, friend, dog walker, reefer, chief cook and bottle washer; human being.

Some moms will say all is well with their world when their kids are doing well. I’m not one of them, sometimes my world sucks even if all is well with the kiddos. But when all isn’t well with them, there’s no question. My heart is doing triple time up around my esophagus, and life sucks.