Artistic Meatloaf at Comicon

I'm jazzed up! 

I had been saying I needed to go see art, thinking I needed to see the Gauguin exhibit at the Seattle Art Museum.  It isn't too late.  I still have until April 29th to go.  Maybe I could bring my boy there during spring break this week.  Somehow, I don't see that going over very well.  Instead, I think I need to bring my notebook and some pencils and sit quietly by myself and that would make me happy.  I've need more art in my life.  Who would have thought? 

Well, a friend was spending her weekend on a three day pass to the Emerald City Comicon.  We talked to her last year after it was over and figured that we'd like to go to see what was up.  Well, Nick and I went this afternoon while Mike was finishing up his wilderness first aid training.

People-watching was exquisite!  There were people in costumes I recognized and many in the strangest getups.  I'll get you some pictures tomorrow.  Tonight, I got distracted and realized that with 1983 photos on my iPhone, it will take too long to download anything tonight.  Have I told you how much I love my iPhone?  I find it difficult to put pictures of Nick, or even Buddy, into the garbage, even though I have copies on my computer and backed up on our hard drive.  For now, you'll have to believe me that the people-watching at Comicon was fabulous. 

I kept telling Nick that this was his opportunity to stare.  These people wanted us to see them, to see the detail in their costumes, to talk about how they designed and built them.  These are their true souls, opened up, I told him.  Do I really think that?  Yes, I think I do.

Watching the artists work made me even happier than watching the people.  There was one guy, Gabe Jackson, who was drawing a zombie in his sketchbook.  It made me laugh out loud.  When I told him I was sorry, he said,

"No! That's what I was aiming for." 

Gabe was grinning.  How is it that a zombie, a small detailed zombie cartoon, can be funny and make me laugh out loud all by himself?  This guy was brilliant! 

I wanted to buy a gaming coffee table, the steampunk gun, and a half a dozen T-shirts.  I wanted art that was drawn on the spot.  Instead, I bought Nick whatever he wanted which consisted of two Lego guys and a paper doll monster that Gabe Jackson designed.  Nick named him Meatloaf and he already has a personality in our house.  Apparently, he doesn't like me very much yet, but he likes when I scratch his shoulder in that one sweet spot. 

Thank you for listening, jb

When A Battle Is Worth Fighting

It's been a bad day, a string of them.  Mike and I are no closer to solving the problem with how to keep Nick safe from his allergies at fifth-grade camp.  The staff at school keeps asking me to do their work for them.  It's all really sad.  This school was a haven for Nick, a place where this medical problem was taken care of, even minimized, an outlet for volunteering where I had felt welcomed and comfortable.  Is all of that so easily burned into ash?

Tonight, Teddy chewed on the birdhouse that Nick made at a birthday party.  Nick got really upset because the poor little birdhouse doesn't look so good now.  Nick's anger got him into trouble and now he's lost two days of TV privileges.  I know how he feels.  I'm trying really hard not to let my anger get me into trouble.

Mike's going to be at a first aid training session all weekend.  That's a good thing in general, but I really need time with him by most Friday afternoon.  I really need him this weekend. Nick does too. 

I'd really love to complain about all of this on Facebook, but I can't because I'm actually Facebook friends with the school nurse who's just about as angry with me as I am with her.  I'm not sure why she's angry when I'm the one to whom promises had been made.  I don't know how our friendship is going to survive this. 

I should lean back and let these school people fail.  Then, when Mike puts his foot down for the final decision, then they'll get the picture that they didn't do enough.  Neither of us is convinced that they're taking it at all seriously.  They just keep saying, 'you need to call these people' and 'you need to set up this information.'  I don't want to do their job for them.  The school nurse is trying to sound confused about what I'm asking and I just know she's smarter than that because we've talked about these details on and off for the past five and a half years.  She's pretending that she didn't explicitly say I would be allowed to go on this trip.  Oh, she is not confused.  Today, she tried to tell me that these medical-need spots for parents are reserved for the kids who need feeding tubes and who have to get their lungs suctioned out twice a day.  Really?  Where is that child in these classrooms?  I know of only one who just might have an issue such as this.  You see, I know these kids pretty well since I've been active in their classrooms since kindergarten.  How is it that I could have slid so far down that scale?  I know there aren't ten or more of these children who need extra help.  I believe the selection process is a popularity contest and nothing more.

And the teacher's email to us sounds pedantic and condescending.  Oh, I do not like condescending attitudes.

I haven't been able to tell a good story in a couple of weeks and I'm not sleeping well.  I hate when people can't just get along, but to tell you the truth, my son's life is worth this battle.  I hate every moment of it, but he is worth it, even when his anger gets him into trouble after the dog chews up his birdhouse. 

Thank you for listening, jb

Purple Horses

The boys are in bed.  Adrian had to stay over because his grandma had surgery.  I just looked in on them and Nick is sprawled into the middle of the bed and I'm surprised that Adrian hasn't fallen off the far side.

Yesterday, Nick was invited to a girl's birthday party.  I'm very excited for him to expand his friends, to be included with a different crowd of kids.  He's known this girl since preschool, but they're crossing paths in a new way now.

I got nervous about shopping for an eleven-year-old girl.  Whew!  I'm used to shopping for boys.  What on earth do girls want?  She might be too old for Barbies and dress up.  Who knows?  Then, Rachel told me that this girl is interested in art, among other things.  I knew immediately what I wanted to get for her.  Last night, I dropped Nick off at karate, told him I'd be late to pick him up, and drove one town over to Daniel Smith's.  Have you ever seen all of the cool art supplies at Daniel Smith's?  Check it out online.  I am in heaven there.  I don't even need art supplies any more.  I never seem to use up all the pastels, watercolor pencils, and acrylics that I've accumulated over the years, so I don't get the excuse to go buy more. 

See, I love the kneaded erasers and the stomps.  Oh, I don't even know the official term for the stomps, but they look like a pencil with no lead and you use them to smooth out a pastel on the page.  Life is so much better when you have tools like this.  So I bought the birthday girl a wooden art box and filled it with tools like this, with perfect pieces of charcoal, with a tiny easel, with a can of workable fixative, and with some pastel sticks. I got to pick a palette for her.  I chose four or five purples, a couple of yellows, and then a handful of natural colors, ochre, moss, gray, and tan.  Just imagine those luscious colors all in one piece.  In my imagination, the birthday girl draws a purple horse in a moss green field with gray, overhanging skies like the ones that feel like home to me.  Can you imagine this picture?  Of course a horse should be purple.  Purple is her favorite color.

I kind of went overboard and spent $96.  Don't tell Mike.  Okay, so I needed a couple of notebooks and a pad of good paper for making books.  I got two notebooks out of the one pad, but ended up putting one of the notebooks in as a sketchbook for my girl.  I also split up a package of rice paper I bought for another project and gave her some of that tied up in purple ribbon. 

Here's the thing: When I was a girl, I would have loved getting an art box like this.  My parents had a box of colored pencils that folded inside out and propped up, ready to use.  I loved this pencil set more than I knew what to do with it.  Take the joy of brand new school supplies and throw in a lot more color.  I think my favorite thing was arranging them in rainbow order before I took out a sheet of paper.  Unfortunately, my parents only bought lined paper and that always bothered me.  The pencils almost made up for it. 

After assembling the wooden box, I looked through my own stash.  Now, I have acrylics, fabric paint, watercolors, pastels, pencils, fixative, workable fixative, gesso, stomps, chamois, kneaded erasers, palettes, canvases, woodless pencils, tracing paper, watercolor paper, textured paper, and toned paper.  Oh happy days. 

I need to go draw something.  I'm not good at drawing, but I love doing it anyway.

Thank you for listening, jb

Proactive Mitigation of Anaphylaxis

Tomorrow morning, I meet with Nick's teacher, school nurse, and the principal concerning how Nick's tree nut allergy will be managed if he goes to fifth-grade camp. Did I tell you that I was not selected as a parent volunteer? I was told that kids with medical needs got preference when it came to selecting their parents to go and that I was a shoe-in. Mike and I were pretty upset when we found out I wasn't selected.

For this meeting, Mike wrote up a single sheet of paper for me to use during our discussion. Oh, I love this man. He used phrases like 'proactive mitigation, reactive mitigation,' and 'controlling cross-contamination with the allergen.' He's a brilliant man, but he doesn't roll it out for everyday use. He has nothing to prove, most of the time.

The problem that I knew I'd have is that it is now 2:13 am and I am not asleep. I have trouble relaxing before I present information like this. I'm not angry any more, but I'm afraid they'll gang up on me and try to pressure me into saying Nick can go despite the fact that they haven't managed the 'proactive mitigation' part of our plan. Shoot, they haven't even managed it in the classroom.

Here's what Mike wants. Im not using his language here. He wants Nick to carry his EpiPen at all times. He wants the volunteers, teachers, and counselors to be trained to know where the nuts might show up. Aside from the obvious candy bars, breads, and desserts, there are tree nuts in some types of hot chocolate, hacky sacks, and hand creams! He wants them to understand what Nick will do and look like if he eats a walnut or almond or other nut and what they should do. Nick will tell someone his lip or mouth hurts, his face will get blotchy and possibly swollen, and he will most likely throw up. If they recognize that, they should stab him in the thigh with his EpiPen, count to ten with the needle in, and call 911. Seconds count here and they shouldn't be fumbling with the safety cap on the end. Mike wants to know that the rule against bringing outside snacks will be enforced. Nick will need the kitchen staff to check their labels, prevent cross-contamination of nut residue by properly cleaning their utensils and countertops. The last thing Mike wants is for Nick is to get a nut-free alternative.

I need to emphasize, Nick's doctor says, that planning on using the EpiPen without taking these precautions is dangerous. Remember how I told you that the last time Nick ate a fragment of walnut, using the EpiPen was not working very well for him in the emergency room. She says it's too dangerous to do a skin test on him. He has to have blood drawn.

The teachers have said that they want Nick to gain independence. I'm pointing out that he won't be able to control much in that environment, the menu, the snacks other kids touch and eat, or who touches him. There isn't going to be a lot Nick will be able to control.

Can I sleep yet? Maybe. I'm going to look like hell in the morning, but with a cup of coffee, I'll be able to say what Mike and I need these people to hear. I really want to avoid the words that have been rolling around in my head: You can't learn much if you're dead.

Thank you for listening, jb

To Hell in a Wheelbarrow

I'm always a little sad on Sunday evening.  Tomorrow, the day will start with the rush of morning readiness, then both Nick and Mike will be gone until afternoon.  Sure, I'll have time to walk happy dogs with my friend, Rachel, and I'll go to school to volunteer later on.  I have plenty to do if somehow I'm not still catching up on sleep, but I'll be a little sad anyway.  Tomorrow, I know I'll be tired.  I'm tired right now. Tomorrow is going to be one hell of a daylight saving shift in time.

I've been on the night shift.  When Nick has trouble breathing, I take the night shift because I'm more flexible.  Mike still has to function at work and he needs to stay on a good bedtime schedule because he already has serious trouble sleeping.  That means, for the past three nights, I've been working to stay up late with Nick so that I recognize breathing trouble when I hear it.  When Nick's sick, he sleeps very loudly anyway, snoring, talking, and moaning because he's not truly resting. 

Nick's on Prednisone and Xopenex, both of which rev him up, so for the past couple of nights, it was nearly impossible to get him to sleep on time.  The nights have been a blur, but this is how they ran.  After I read four or five chapters of our current book, we finally went back out to the living room and stayed up late watching a movie he'd seen a dozen times.  I intentionally chose it that way so it didn't stimulate him to stay awake.  He has been getting to sleep after 1:00 am.  By that hour, I was loopy.  I worried that I'd miss some critical point with his breathing, or worse, overdose him because I couldn't remember what I'd done.  We sat in dim light to induce sleep for him, but I had to work to stay alert.  My iPhone has been helping.  Did I tell you I love my iPhone?  I read blogs, played games, and checked out Facebook.  As it got later, I settled in with a blanket and a cat on my lap and fell asleep before he did, but with Nick's coughing, it was fitful and I didn't feel right about it.  When I saw him beginning to doze off, I tried to get him into his own bed so that he'd sleep better.  I wish I could still carry him into bed.  It would have been easier.

Since I woke him up too much, I read another chapter of our book in his room, then I sat there quietly until I was sure he was asleep, using my iPhone to keep some part of my mind moving.  Then I left the door open and headed out to the couch where I tried to get some sleep myself.  It was hard to relax and sleep because I was worried about him. 

Both nights, according to some internal clock, the medicines wore off and Nick woke up choking and coughing.  I supplied the Xopenex by holding  a tube up to Nick's nose for twenty minutes at about 2:30 am while the nebulizer turned the liquid into a little cloud he could breathe.  At first, he startled from sleep when I turn on the compressor, but he quickly fell asleep to the droning noise.  It was my job to hold steady for twenty minutes until it was done.  Having exhausting any activity on Facebook, I played 'Words with Friends' to try to stay awake and even then, I dozed a bit.  When I woke up, still holding the tube, it was nearer to his hairline than his nose.  The compressor may not be working as well as it used to after seven years of use.  It seems like it takes longer to deliver the medicine than ever.  Maybe it's just the way time distorts at 2:30 am.  Nick didn't even wake up when I turned the compressor off and left the room to rinse out the mask.  In my bright kitchen, I wrote down the date, the time of day, the medicine, and the quantity so Mike wouldn't have to wake me up in the morning to ask. 

We have nearly filled two of these steno pads, line at a time for each dose. The second one has about ten pages left.  It's handy to bring these to the doctor when I'm too tired to answer the nurse's questions about what medicines Nick's been on and how long ago.  The staff almost always look at us differently when we bring it in, the lines speaking for themselves.  I just don't want to have to conjure up information that I was too tired to remember. 

According to his internal schedule at about 6:30 am, Nick began to cough again and I got up to gather the paraphernalia to give him another dose.  This was when I was begging, silently, for Mike to wake up and both Friday and Saturday, he did, thankfully, and took over for me.  Then, I went down to the guest room without my phone, closed the doors against any feline visitors, and fell asleep. 

This morning, at 9:00 am, I needed to get up to go to church, seeing that I'm in their very small choir and all.  I tried to keep my revised sleep schedule from getting me down during the sermon.  In the pew, even in the back row, it's not all that prudent to use my iPhone to help keep awake.  It's hard to have a spiritual side after a succession of such strange nights.  Unfortunately, my judgement was altered.  When the minister suggested that this week, we plan to serve others as part of some Lenten journey, I laughed out loud.  I actually snorted. 

Oh man.  I'm going to hell in a wheelbarrow.

Thank you for listening, jb

Saturday

Today was a sweet, quiet day with time for a board game with Mike and Nick and a long, wet walk with the dog.  I love Saturdays.  I was hoping to have some time to quilt, but I don't mind the day we spent together.  Nick had been up coughing late into the night.  Then, he'd gotten up for more breathing medicine at 1:45 am.  I'd had trouble waking up and was afraid I'd poison him with too much medication.  Then, once he was asleep again - his eyes had closed before the nebulizer had finished delivering its dose - I was wide awake and had trouble getting back to sleep.  So I pictured the day as one fettered by fatigue.  It wasn't.

This is the way my day looked late in the afternoon.

I'd like to have seen a dog or two in the foreground.  Teddy isn't one to wander out into the distance, though.  He's right there with me.  Usually, when I'm calling him, wondering where he's gotten to, he's right behind me.  At this moment, he's asleep on the floor next to my chair.  He really is a good dog.

When I got home, the three of us resumed our game, a D&D game called 'The Legend of Drizzt.'  It allows me to imagine my fearless female archer, to battle strange monsters, to use those cool twenty-sided dice.  It's not even a video game!  I can get with that. 

Thank you or listening, jb

Leaky Pens

Last week, I spent an hour looking for my favorite pens online, Itoya's Paperskater.  I also found a bunch of refills.  Here's what happened - I was writing on my merry way with my old favorite pen, the Jimnie, when I walked into this great art supply store, Pygmalion's Art Supplies, in Bloomington, Indiana.  I like this place for a lot of reasons, not the least of which that their cat crawled into my backpack there one day and looked up at me adoringly.  Okay, they have great art stuff, nice people, and have been there since I was in high school.  They're just off Kirkwood, where the hippies hung out and gave me peace signs and flowers back when I was a kid in the sixties.  I liked the hippies, though my parents were dubious.  I like it at Pygmalion's because it's usually an escape from stress.  I took my nephew there, not the one who hung up on me, but the other one, and now he's hooked too. 

So that was where I found a new favorite pen.  There wasn't any of the scratching on the paper that happens with some pens, or the soft drag of a cheap ballpoint that happens with others.  For a while, I was visiting Pygmalion's often, when my grandma was sick.  I remember one night, I had gotten there just a bit too late and they were already closed.  A flock of crows stood in a row along the top of the building across the street, as if standing guard.  They were also sitting in a small tree, probably a dogwood, looking like large black leaves fluttering but without a breeze.  I was so creeped out that night.  I know I was influenced by the fact that my grandma was in a great deal of pain, that I hadn't fought harder to assure her some ease, that I really didn't have any control to be able to allow her that relief though I loved her dearly.  Those were dark days for me, yet, going to Pygmalion's helped.  The next day, I went back and bought myself a couple of nice notebooks and a handful of the Itoya pens, more than I really needed. 

I've lost or loaned those pens by now and need more.  I called Pygmalion's and they don't carry the same type of pen any more.  To find a new favorite, I need to feel it in my hand, to write with it.  In the meantime, I'm stuck scrabbling around on the Internet to find them.

Yesterday, both orders arrived on the same day.  The first was in the mailbox and I opened the envelope at the mailbox.  That kind of excitement is pathetic, isn't it?  I had ordered ten Itoya Paperskater pens, 0.7mm.  What I got were twenty Itoya Paperskater Synergy pens, 0.5mm, ten of which had bled all over the inside of the package and didn't even work.   I called the company and they were pleasant enough on the phone.  I couldn't come right out and say to the nice woman that if I didn't get the actual pens I liked, I wouldn't order anything from them again.  I hate it when people are pleasant in a situation like that but do nothing to fix the problem.  I did get ten functional pens.  This woman didn't understand that feeling of having your favorite pen in your hand.  She just didn't.  Well, okay, I paid for ten pens and though my hands were covered with leaked ink, I got ten working pens, just not quite what I wanted. 

Then my other package came.  I was happy again.  At least I had lots of refills for the three pens I did have left.  I go through the refills surprisingly quickly.  There were five packages of refills in the box.  I had ordered fifteen.  When I sent an email about where the other refills were, a nameless reply told me that the ones with blue ink were not available.  I like blue ink.  Why is it so hard to get blue ink?  So they credited me.  Great.  I just paid seven dollars in shipping for five pen refills.  All that joy over my favorite pen has leaked away and made a mess, just like the ten crappy pens they sent me. 

So if you want to know the truth, I've had a bad day, what with Nick going straight from a stomach flu to a respiratory infection along with the requisite breathing issues.  He's taking Prednisone again.  That'll be ten pounds added to his weight by the time it wears off and five days of jittery, easily frustrated boy.   I'll be dozing on the recliner tonight, listening to him cough.  I got a call from his school today.  It looks like he's not going to be able to go to fifth-grade camp because of ineptitude or attitude, I'm not sure which.  They're trying to convince us to just send him, yet I still have absolutely no information about the menu, cross-contamination, or how well they discipline kids who bring forbidden snacks.  As if that's not enough, we have raccoons in our attic.  Does that explain why I'm obsessing over a stupid pen?  If I need to, I can use any old pen to write.  It's just nice when I can actually have one small thing that makes me happy when the rest of my day is going to shit. 

Thank you for listening, jb