Dec 30, 2010

Dental Surgery Number Two

Thanks for the teeth doc.
Eww!

I can't even begin to explain the difficulties children and families affected by Osteogenesis Imperfecta encounter. One of the most frustrating things (and there are many!) they face are dental issues and finding good dental care.

In The Boy's case he has all of his teeth but not enough room for them, i.e., a severe malocclusion. The baby teeth rarely if ever come out on their own saving money on the tooth fairy but making it very difficult for adult teeth to find space to erupt. Consequently, he has teeth in the roof of his mouth and teeth in his gums and teeth all over the place.


I spent years... 8 to be exact... dutifully dragging him to a pediatric dentist every 6 months to no avail. The dental office was a cattle call. The dentist a joke. Thanks to our Children's Medical Services nurse (we love you Brenda!) and the CMS craniofacial nurse we were finally connected with a Big City pediatric dentist who cared. Yes, genuinely cared. His office is filled with special needs children, migrant workers and children who have probably found it difficult to get adequate dental care in the past. Irregardless of socio-economic status or medical complexity EVERYONE is treated with respect.

Fellow OI parent Melissa's hellish dental encounter detailed in her blog 3 Pretty Girls sums up the frustrations and fears that OI parents have to suffer regarding dental care better than my blathering on and on.

Read it and weep.

I'm happy to report, however, after this nightmare Melissa has found a dentist for her little one with OI. One who will actually listen to her and treat the wee one properly.

As for The Boy, he couldn't have gotten better care in the Big City Hospital. Again, as with his first dental surgery n July of 2009, he was treated like royalty.

Choosing the scent for his anesthesia mask. The winner was: Cotton Candy


The nurse shows him how to paint the scent on the mask.


This is so cool!

Testing the Cotton Candy scent. Yum!


Getting nervous.

After the above collage photo The Boy was taken to surgery with a large entourage of professionals. They were armed with the manual BP cuff which caused a sensation as always since no one uses manual BP cuffs anymore in a hospital setting. The Boy cannot have BP taken by Dynamap as the pressure exerted by this BP machine has snapped his arm in two. I think about Melisa when a nurse asks, "Well, if we can't take his BP in his arm what about his leg?"

ARGGGGHHHHHH!

Um...after 7 plus femur fractures I don't think so!

I give my speech to the anesthesiologist regarding The Boy's increased likelihood of developing a pseudo malignant hyperthermia reaction to anesthesia simply because he has OI ignoring the familiar glazing over of the anesthesiologists eyeballs. I'm not sure he's following me or taking me seriously until he picks up his phone.

"This is Dr. Feelgood. I need you to flush the lines in OR room number 4. Now."

I don't know what in the world this means but I do know that "flush the lines" signals the fact that I have been taken seriously even if the possibility of him developing a pseudo malignant hyperthermia reacition is rare.

I trot off to the Big City Hospital cafeteria while The Boy is in the OR where I encounter this:


WT?
Be still my growling stomach!

Grilled Swordfish with Capers? In a hospital cafeteria? For $2.50? I'm getting a job here people. I mean seriously.

The surgery went well with 2 adult teeth and 2 baby teeth extracted without difficulty. Two other adult teeth that the orthodontist had recommended for removal were too deep to safely remove without breaking the jaw. "Maybe next year."

Ugh.

The dentist presents me with two little treasure chests containing teeth. I open them. Oh, God.

As the Artist (who cared for the girls in my absence) points out later, "there is still flesh attached to the teeth." Gross.


The Boy is feeling rough and extremely irritated that the nurse will only offer him juice and Popsicles. Eventually, he wins and gets chocolate ice cream which improves his mood drastically.

We head home within the hour. Puffy but, full of ice cream and eternally thankful that we have had the good fortune to find treatment for The Boys complicated situation knowing that so many kids with OI are not as fortunate.


Until the next time.

Dec 27, 2010

Just Stopping By To Show Off The Family





Onward to 2011...

Dec 25, 2010

Favorite Christmas Cookie Memory 2010


"Mommy! The baby just killed her Ginger Bear!"

Dec 24, 2010

Surprise Christmas Eve Visit

Santa stopped by tonight on his motorcycle.



The kids were delighted.



Well...


Maybe The Baby wasn't exactly delighted but she did let Santa hold her while she stared at him like he was an alien.

Thank you, Santa! Just when we thought Christmas Eve couldn't be any more special!

We waved while Santa roared off into the night.

He told us he was on his way up north to pick up Rudolph.


Dec 23, 2010

Treasures


I've been working diligently to get my studio/craft room in order. A place surrounded by my personal treasures and things that inspire. It's been a long difficult process getting back to my creative roots. Life has a way of robbing one of creativity when your primary focus is on survival.

I'm weary of simply surviving. The artistic vein runs deep in my family and I am determined to find my place as an artist before I die.

My maternal grandfather was an artist. Rumored to be worthless. "Never worked a day in his life." Ran off with a Red Cross worker during World War 1 leaving behind a wife and 4 children who were farmed out to relatives and orphanages. One of whom was my mother.

My mother was raised by a maternal aunt who had huge oils of landscapes in her home. I would sit as a child for hours staring at those paintings. Mesmerized by each brush stroke. Never knowing my own grandfather had created them. My parents, neither of whom possess a sentimental bone in their body, informed me they left the paintings behind when they sold the aunts home. Groan.

Every time I go thrifting I look at the art. It is my fantasy to find one of his paintings one day. Currently, all I have left of him is a photo and a ring from World War 1 worn by his lover. I never met him. He died from complications of being mustard gassed at the age of 50.

Unlike my parents I am sentimental. Normally, I would never be attracted to the above miniature pitcher and bowl yet it is one of my treasures because The Boy gave it to me. The Oregon Rose Festival plate reminds me of my early child hood in Portland. The recently rescued head vase was found in the bottom of a canvas bin at the Weigh n' Pay where glassware is 40 cents a pound. The Artist is a kindred spirit who also rescues. Motivated by sentiment.

If I were an animal I'd be a crow or a ferret because I love to drag treasures into my nest. Mostly shiny. Sparkly. Old things that have a great deal of appeal to me because once upon a time they belonged to someone. It's who I am. Obviously not everyone is of the same persuasion.

This may be why I have these 3 children who are also not like everyone else. I spend a great deal of time trying to explain to them that it is supremely unimportant to fit into the world's view of "the mold." When The Boy was embarrassed over his self portrait because it didn't look like the other students I told him stories about other people who didn't create like others but were never the less great artists. Van Gogh. Mozart. Dali. Kahlo. Pollack.

We can't all be Bach's or Renoir's. We are simply not wired in the same manner.


Looking around the room there are vignettes that are me. They remind me of who I am and of what I like. Not what I think I should like. Not what I think others would like.

Two rescued ladies which I am repairing slowly but in the meantime hold my book marks from vintage jewelry and buttons. They frame a linoleum print purchased in the farmers market during a visit to the artist.

A temporarily home for my recent costume jewelry purchases. A quarter a pair from a garage sale they grace a rescued lamp.


A grocery bag in the making made from a discarded Bath and Body Works tote, a vintage pillow case and rescued trim.

Sporting my new label.



Vintage trays. The perfect place for my late night bling creations from discarded costume jewelry.

Salma Hayek sums it up nicely for me:

"People often say that 'beauty is in the eye of the beholder,' and I say that the most liberating thing about beauty is realizing that you are the beholder. This empowers us to find beauty in places where others have not dared to look, including inside ourselves. "

Or inside a Weigh n' Pay dumpster, perhaps?


Dec 21, 2010

Lunar Eclipse


Yes, I stayed up to watch this historic celestial event!



Did You?

Dec 18, 2010

Dec 17, 2010

School Play and Catamenial Seizures



As an organized person one of the most difficult lessons I've had to learn over the past 15 years is that in certain circles organization is a complete myth. You know what I'm talking about. That certain place in life where you are in the center of the circle with a special needs child. Or one. Or two. Or maybe 39 like Big Mama Hollers. An ill spouse. An elderly parent or parents.

You sit down to the table for a wonderful family dinner. Suddenly your child has a terrible seizure. The dinner grows cold. The other family members wait, alone again. You cry.

Your elderly parent breaks a hip.

Your spouse requires dialysis.

Situations that wreck havoc with our already fragile "schedules."

At first I fought it. Now I mourn it's loss but move on. There is simply no solution and one of the hardest lessons I've learned is this: the fact that there is no solution is not necessarily a bad thing.

The house has never looked messier. The appointment book has never been fuller. But when you relinquish control and "go with the flow" as is our mantra you discover something. School plays are funnier. Surprise gifts from new and old friends are more surprising. Coffee with a neighbor never tasted so sweet.


In this hectic season please stop with me and take a breath. Concentrate on what is most important.

Family.

Giving.

Friends. Both old and new.

I'm sure you'll think of more. I can.

In the midst of the usual complexity of our house hold The Teenager has developed Catamenial Seizures along with the Tonic Clonic (grand mall) she develop last Christmas. Fortunately, I have a wonderful neurologist who is always available via e-mail. He responded immediately to my concerns and she will begin a second seizure medication during her menstrual period only.

I refuse, through the sheer act of my French/Irish will, to ask why? We will move on making the most of the blessings we already have.


And we'll dance until the curtain comes down.

Dec 14, 2010

Why I Started A Blog One Year Ago

Dame Edith and Java Mama

I have absolutely no idea.

I think it all started with my friend Java Mama. I knew Java Mama from church in the 1980's. Well, actually I didn't know her. I knew she was a nurse. Period. One Sunday I tapped her on the shoulder and asked if she would like to go to Haiti.

"Ok."

The rest is history.

We bonded over canned food and coffee cooked on sterno and cute Haitian babies. We guarded the outhouse for one another in Babylon and dove under a church pew together when the witch doctor decided to kill us one evening by stoning us.

We climbed a mountain together to get to a remote village. A tiny little girl kept trying to get Java Mama's suitcase away from her and Java Mama kept shooing her away. "No, honey it's too heavy for you!!"

Thirty minutes later after huffing and puffing 3,000 miles uphill she tossed the kid the suitcase. "Take it!" The kid took off like a mountain goat leaving us in her dust.

Java Mama woke every morning to the donkey's braying and the roosters crowing and the voodoo drums and put on her makeup. Foundation. Mascara. Lipstick.

I'm not sure if I even combed my hair the entire time we were there. I did try to clean my face one morning with a Stridex pad only to discover that I had wiped it with a five day deodorant pad instead. Who needs Botox? My face didn't move for a week.

Technically, Java Mama has always been more advanced on the computer than I have. I tried to duplicate some of the things she did years ago and always failed. She started sending me links for interesting blogs over a year ago and I found myself being reeled in while reading them. I think it was the technical challenge that eventually hooked me because I've never been a journaler.

What has surprised me most about blogging and what keeps me motivated is the many interesting and inspirational people I've met since I've begun this journey. Interesting people like the family who on October 1st of this year stopped purchasing food from supermarkets and restaurants. Or the blog of a PHD candidate who left it all behind to become a farmer. I am inspired daily by the poets, photographers, painters, and craftsmen. Encouraged by the re-cyclers. Comforted by the struggles and the triumphs of industrious moms and dad of special needs children.

I've made some wonderful friends.

And just when I think I've seen and enjoyed it all there is a knock on my door Sunday night.

In the middle of a sewing binge (yes, I did get my new machine!) I haven't changed my clothes or combed my hair all day. The Boy flings the door open and yes I've given him the don't ever open the door without mommy speech about 1,00 times to no avail.

Standing in front of me with a huge bag of gifts for the entire Pepper Family (yes, for The Dog and The Cat, too!) is the author of From A Heavenly Land.

Hello! Fortunately, I was too pleasantly stunned to be totally embarrassed by my hideous appearance.

Mrs. Heavenly Land is a brilliant glass artist and The Secret Pepper Person's present feels suspiciously like one of the glass creations I've seen on her blog and is marked FRAGILE. No, I have not peeked and I won't peek. I don't get many surprises at my age!

Woo hoo! I can't wait for Christmas morning. Guess what I'm opening FIRST?

Thank you From A Heavenly Land for such an unexpected surprise.

And thank you Java Mama for starting it all. How about another trip to Haiti Starbucks to celebrate this blogs anniversary?

Dec 7, 2010

Artists For Hope

Google Images

I love Haitian art and have since I spent some time in Haiti in the mid 1980's volunteering in medical clinics. On my first trip I acquired two paintings in Port Au Prince that I love and have hanging in my hall way.

That's why I've been intrigued by a blog titled Artists For Hope. Go to their blog and check out Week # 6. It will bring tears to your eyes.


Google Images

My Haitian "son" who is in his 40's now just e-mailed me to tell me he will be in our state soon. I look forward to seeing him. I remember him as a gangly teenager with swollen ankles. He was orphaned and lived with an aunt in a one room shack in the capitol city. Several of us supported him financially over the years in hopes that he would find a better life.

Google Images

Now he's a 41 year old author and college graduate who taught high school in Jamaica for many years. He currently resides in California.


Google Images

The smallest seed in the world belongs to the orchid. A reminder that the smallest seed will not only come to fruition but will often produce great beauty. Much like the little girls in Week # 6. Much like the gangly orphan.


Google Images

"Keep on sowing your seed, for you never know which will grow - perhaps it all will."
Albert Einstein
Google Images

Albert was right.

Dec 6, 2010

The Never Ending (Christmas) Story

Photo from Google Images

When you have a child with severe dyslexia and memory retrieval deficits you are lucky to obtain any information whatsoever regarding their day at school. That's why I was surprised and tickled pink when The Boy reminded me about the Christmas Play Wednesday at 1:00 pm.

Wow!

"So I guess the play is not going to be at night this year?"

"Oh, no. It's at night, too."

"Huh?"

"Yeah,the play is from 1:00 pm to 11:30 pm."

"But that's 10 1/2 hours!."

"I know. It's a loooonnnng play."
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Dec 4, 2010

Pimpmobiles And Gangsta's

Photo courtesy of Google Images from the movie I'm Gonna Get You Sucka

So I'm attempting to concentrate on my monthly billing and mileage (FYI: i hate Excel) and The Boy wants to discuss hydraulics. Yes. Hydraulics.

There is a buzzing in my head while he expounds on the beauty of the Escalade, cost of spinners, and hydraulics.

"You know, cars with hydraulics are for gangsters."

"Mmmmmhmmmm..."

"Gangsters and
pimps."

"
WHAT?"

"GANGSTERS AND PIMPS."

"I can hear you! I was just curious. What is a
pimp?"

"It's another word for gangster."

Yeah. Well. We'll just leave it at that for now.


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Dec 3, 2010

Even Mall Teriyaki Chicken Looks Better During Times Like This





Preventing Textile Waste = Visa Justification



I took a sewing class when I was 13 and hated it. The teacher was an obsessive compulsive frustrated home economic wanna be teacher who actually made us put tailor tacks on our pattern pieces and made everything so complicated I thought I'd never learn to sew and figured I may not want to learn to sew....zzzz zzzz zzz zzz.

My mom came to the rescue and after one brief mom lesson I never looked back. In high school I made all of my own clothes. I remember a boy named Perry who sat behind me in 10th grade English complimenting my dress one day. When I informed him that I had made it he replied, "I know.You left the basting thread in the zipper." Turns out Perry's world was over flowing with sisters. He probably knew what a tailor tack was as well.

My best friends in high school sewed as well. One in particular whose initials were LSD (we got a lot of mileage out of that in the 60's) is a seamstress to this day. In high school she created a patchwork robe from velvet scraps which was displayed in a glass case in the high school hall way. I'll never forget it.

I would come home from school on a Friday, cut out a dress and finish it in time for my date that night.

In the olden days I used the sewing machine my dad got my mom as a wedding present (No, he's not very romantic) in 1944. I still have the machine but I am currently using a sewing machine given to me as a gift in the early 80's.

The closets are over flowing with stock piles of vintage fabric. My brain is over flowing with ideas I am desperate to implement. Ideas that involve re-purposing and rescuing these vintage fabrics giving them new meaning and new life. In doing so I also get the satisfaction of knowing I'm saving them from the landfill. The quilt pictured above was found yesterday at the local Weigh n' Pay for 50 cents a pound. I saw one of my dumpster diving buddies looking at it, "OOOOOO! You found a treasure!" "No," he answered. "It's a piece of crap."

OOOOOO! One mans piece of crap is another womans' treasure. I snatched that crap quilt right out of his hands.
Gimmee! Gimmee!

Lovely old quilt, do I have plans for you!

This grocery bag made from all discarded materials is almost done.

Textile waste accounts for 5% of landfill waste in this country. And even though
93% of textile waste that is recycled is successfully re-used 85% of perfectly viable textiles still go in to our landfills releasing noxious fluids and gases into the environment. High end department stores have been busted cutting up new clothing with tags still on them and throwing them in dumpsters rather than giving to the poor and needy.

This morning I am a woman on a mission. Armed with an over whelming urge to create i start working on a bag made from a patchwork fabric I made myself using two discarded women's outfits.

The sewing machine poops out...again.

I gotta say after being up ALL NIGHT LONG with a singing baby who decided to serenade me between 10 pm and 5:30 am my patience with temperamental sewing machines was zilch.

I recently took it in to be cleaned and repaired and when I picked it up the receptionist informed me the repair man was "cussing and swearing over this one. He had to grind the bobbin by hand and ...." And she droned on and on and on like a sewing machine in a sweat shop.


Today, I'm charging a new machine. I'm breaking my hard and fast rule of no credit cards because I'm backed into a Christmas corner. Even if I was brave enough to bring it back in to the swearing man it would be weeks before he had it ready. Now days you can get a new machine for the price i pay for repairs. It's time to say good bye.

Joann's fabrics here I come!

Armed with my Visa and the sweet spirit of justification I know I
am doing this to keep those creative juices flowing and to contribute to a cleaner environment.

One crappy, rescued quilt at a time.



Nov 29, 2010

Shutterfly Rocks!

I love Shutterfly! I've ordered cards, mugs and gifts from them for years. They always have great discounts and incentives and the final product is always superior. After ordering my Christmas cards (see sneak peek on the right) I got a great offer to receive $25.00 off on my next purchase if I post our card on my blog. Who can beat that? I still have more mugs to order...and photo books.... fa la la la la la la la la.....

Washington Oaks Gardens State Park

Ok. Seriously folks. You didn't think you were off the hook with just a few vacation photos did you?

In the olden days when The Genius and The Artist (here we go again...) were young and we were on the way home from our trips to St. Augustine where we mostly shopped and ate our way through old town, we would often drive along route A1A. It was during these times that we discovered places like Washington Oaks Gardens State Park.

Times that bored The Genius and The Artist to tears.

Now it's one of The Artists favorite places. Sweet vacation maternal justification!

Nestled between the Atlantic Ocean and the Matanzas River, this property was once owned by a distant relative of President George Washington. In 1936, the land known today as Washington Oaks Gardens State Park was bought and given to Louise Powis Clark by her husband Mr. Owen D. Young. Clark was a designer from New York and Young was an attorney and industrialist who had been chairman of the board of General Electric Corporation and RCA. He was named 1929 Time Magazine "Man of the Year." The house, built in 1938, became a winter retirement home for Clark and Young.

Must be nice to have that kind of moola.

Mrs. Young donated the property to the state of Florida in 1964 following the death of Mr. Young.

Live oak trees like the one below are estimated to be between 200 and 300 years old and have withstood the test of time, hurricanes...


and small boys.


American Indians once used the water's edge as a rich food source. Now days the waters edge is a paradise for family exploration. We hiked the Mala Campra trail on Thanksgiving Day. The Mala Compra hiking loop is a one half mile (.5 mile) loop that explores the ecozone between the coastal maritime hammock and the estuarine tidal marsh along the Matanzas River.

Treasures of the tidal marsh abounded like this skeleton of the Crucifix Fish:



Raccoon tracks and river water. What more could anyone ask for?


How about "The Secret Garden" discovered by The Teenager.
I was tickled when she was jumping for joy by her discovery and actually associated the scene before her with one of her favorite books.

"Can I go in? Can I go in?" She was so excited!


The Boy, who prefers animal scat to literature found his own amusement in the secret garden:


At the end of the day we weren't terribly hard for the park ranger to locate. After all, we were the only car in the lot at dusk when he scurried us along.


I spent a lot of time while watching the Secret Pepper Family explore Washington Oaks pondering how we really do it all wrong most of the time on vacations. Yes, I love Disney as much as the next person but there is so much more to life than paying a monetary fortune to be amused for a few hours.

When you ask The Boy what his favorite part of the vacation was he replies, "The jungle." Jungle...tidal marsh....close enough.

When you ask The Teenager? "The Beach."

Just don't ask The Baby.

Get me out of this bug infested swamp. N-O-W!

She may be the one Pepper family member to prefer Disney over the call of the wild.

If you are ever in St. Augustine do yourself a favor and skip the touristy St. George Street and head out to one of the many beautiful state parks in the area.


You'll be glad you did!


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