Next Wednesday the 2nd of December we will get our tutorial and start the shots right after school.  Leah the nurse will come and show us how to do it.  She says it will take about half an hour to school us in shot-giving.  She also says she has an activity at the Unitarian Church practically next-door to us.  I think I like Leah already.

Jim at BCBS says he is approved for growth hormone for one year. I love Jim.

I tired of waiting around while people who don’t know us supposedly work on our behalf.  Andy tired of not knowing what to do with our Flex account.  I decided I didn’t really care what Lila at Genentech said, the insurance company was who we were waiting for, so I called them.

Rebecca said that BCBS received the request for approval on the 6th of November.  Now, our doctor talked to us on October 14, give or take a day and said he’d pass it onto the blahblah, which I admittedly glossed over and assumed would be fine.  He said we’d hear in a couple weeks.  I was sure by the end of the month we’d be ready to go.

Three weeks later, BCBS hears their first of the case.  Legally they have 7-10 business days to make a call on it.  That’s what Rebecca said, “So I would guess you’d hear something right around the 19th of 20th of November. “

I looked at my calendar to double check, “Well, that would be more or less… today, right?”  Long, long pause.  “Just a moment.”  Sometimes you have to compose yourself when what you say runs smack into reality.   “You should be able to call this afternoon or first thing tomorrow and find out if it’s approved or not.”    So I guess that’s what I’ll do.  I’ll keep you posted.

Last time I jotted down some notes about our great growth quest was around 3 weeks ago.  That was a couple weeks after the last contact we had with  Doctor Tebbin at Mayo.  He said we’d be hearing from someone in a couple weeks.  What he said was, “If it’s Ok I’ll pass your information onto  Genentech, who does a good job negotiating with the insurance company.  The case is pretty clear cut, he’s had the gold standard of testing and he’s 16  years old.  You’ll probably hear from them in a couple weeks.”    What I heard was different.  I heard, “If it’s Ok I’ll get your information to blablabla (where I inserted a random hospital department which deals with the ugly financial stuff).  It’s an expensive treatment and insurance always balks, it’s a pretty clear cut case, you should hear from them in a couple weeks.

I spent those two weeks figuring we’d be starting growth hormone shots in about 2-3 weeks.  Remember, we’ve been working this angle for almost a year and we finally have an answer.  I even bought two pairs of skinny jeans for Jasper’s birthday.  One pair was a size 12 slim and the other was a 14 slim.  The 14 slim was so he’s have a pair to wear when he grew oh-so-quickly out of the size 12’s.  We bought tap shoes in a slightly larger size than he needed so he wouldn’t outgrow them.  We made plans to take his picture every day.

It turns out that Genentech isn’t a hospital department.  It’s a pharmaceutical company which makes the growth hormone prescribed for Jasper.  When they contacted me in two weeks we were no closer to getting the shots than when I talked to the doc.  They needed to email me a release so I could print it off and fax it back to them, giving them permission to see the pertinent information and to talk to Blue Cross Blue Shield.  I did this that day.

That was 3 weeks ago.  I called yesterday to get an update since we need to decide about our Flex account money this week.  If we’re paying out of pocket, we’ll need to max out the Flex money.  Lila at Genentech is always nice and professional, and slightly vague.  I asked her if she had an update and I told her why.  She assured me that she was in weekly contact with BCBS of MN.  I asked what that meant.  She said again that once a week she was in contact with them, usually on a Thursday, to see if there had been any progress.

I couldn’t figure out what that meant, really.  Did she go check a website every Thursday morning?  Did she send an email? Did they send an email to her?   Did she call someone at BCBS?  Did they call her?  When I pressed she said that she actually spoke with someone at BCBS every Thursday to find out if they had made a decision.  So far, they had not, but it generally takes 30 days. That puts us at the end of November, which is bearing down on us here, pretty soon.

What’s more, if they deny, we can appeal.  Appealing takes up to 6 months.  I’m getting crabby.

What the heck is a pharmaceutical company doing negotiating with my insurance?  Shouldn’t that be the doctor’s job?  Or mine?  And when Lila asked me not to call the insurance company because it usually confused them and slowed down the process, why did I listen to that?  It all smells funky to me.

Time for my annual Halloween Rant.  Although this year was better than other years, I’ve still spent a good amount of time thinking about why I get so worked up about the whole thing.  I only had to turn away about 10 kids this year.

Every yearI refuse to give out candy to kids without a costume.  The kids are usually outraged, sometimes chagrined and occasionally able to or charm me in some way (I always give the option to do a trick in lieu of having a costume).   But I always end up being tweaked by the behavior of some adults or children.  I decided to try to tease apart what’s behind this.

In  analyzing my righteous indignation I’ve been reminded of a few key points of fact which I  always keep in mind regarding the holiday:

• Candy is cheap.  It’s about a nickel per piece.
• I don’t have to give out candy at all.  I can shut the door, turn out the lights and hunker down with a movie like lots of reasonable people do every year.
• Many people who are driving their kids to my street to trick-or-treat are coming from a neighborhood where they don’t think the kids will be safe
• I’m not the boss of Halloween.  Even if I were the Halloween Queen, there are not official rules of Halloween which I can enforce.

let me take those points under consideration and deal with them in reverse order.

Queen of the ‘ween I may not be, but there most certainly ARE rules to the festivities.  I am partial to rules, if only so I can acknowledge and then ignore them.  The rules of Halloween may not be widely written or displayed, and they do evolve from generation to generation.In order to set the current record straight, I am documenting the rules of Halloween right here and now.

Rule number 1: People (usually children, but adults as well) dress up in costumes portraying story characters, scary monsters, furniture or something else which they are not in real life.

Rule number 2: Dressed up children walk around a neighborhood, knocking on doors or ringing bells.  When a person answers the door the costumed kids say, “Trick or treat” and hold out their bag or bucket.

Rule number 3: The person who answers the door admires the costumed kid and gives him or her some candy.  Door openers have a container of candy at the ready.  The candy is  store-bought and individually wrapped.  No matter what anyone tells you, pencil toppers are not a good substitute for candy.  Neither are peanuts, bible verses, canned goods or Neccos.  In our neighborhood, however, glow-sticks and fireworks are acceptable.

Rule number 4: Houses where the front porch light is off are not participating.  Do not ring their bell.

Rule number 5:  Parents accompany smaller children, but usually wait on the sidewalk

Rull number 6: Older children may trick-or-treat, but the window of opportunity before they become obnoxious is small.  In these cases, they are usually accompanied by friends instead of parents.  All previous Halloween Protocols are still followed.

As to safe neighborhoods, I can sympathize.  But honestly, it has an much to do with greed as it does with safety.   The kids know who gives out the big candy bars and the best stuff.  My own kids have been known to head to the expensive side of Summit for a little taste of how the other half treats.  They don’t go because 4 blocks south is safer than here.  They go because the want a piece of the pie.

It’s true I don’t have to give out candy at all.  I could shut the door and cocoon for the night, but I love chatting with the kids, seeing the trend in costumery,  and saying hi to the moms and dads who wait down on the sidewalk.  The thought of all that chatting and silliness going on while I sit inside is just too much for me.   I can’t hack it.

Here’s my analysis about why this Holiday gets to me.  The thing is, it’s more than a way to get candy and  dress up.  On a basic level Halloween is a way we show membership in the society we live in.  Sure, some people opt out for religious reasons, some people opt out because they’re cantankerous, some because they don’t approve of the sugar.  I get that, and I believe it’s a valid choice.

But for the people who take part, Halloween is a time we can go to strangers, after dark, knock on their door and have them give us a little present.  It’s a great time to bond with other people, a time when kids and adults can safely express some things.  At it’s core Halloween is a kind of skit, or pantomime about an ideal society.  There are conventions, everyone knows what they are.  In order to keep the society lubed and pleasant we follow them.

Trick-or-treating by the rules says, “Hi.  I’m a membero f this community and I want to play with you.  I know it takes a little effort but I’ve decided to dress up, or dress my kids up, so you’ll know we’re playing the same game, following the same rules.”

When the big kids come dressed in regular clothes, with their big heavy pillowcases held open, that says something too.  What it says is this: “  I don’t want to be a part of this community, but I want you to reward me anyway.  In this little charade, I expect you to be civil and pleasant, let me harvest some of your good will without giving anything back.  You wanna make something out of it?”

The thing is, I’m only supposed to give candy by the same rules where you are supposed to dress up and say trick-or-treat.  You assume I won’t call a foul because I’m stupid or afraid, or that I don’t have any expectations of my fellow community members.  But I do.  I know most people just shake their heads and seethe about the big kids without costumes.   I have a feeling if more people sent them packing, they’d either stay home or they’d play by the rules.

My sister-in-law gave me a good tip for next Halloween.  I’m keeping a cheap stash of masks by the door, where I can offer it to kids who are sans costume.  I like it.  This year I gave out the most insipid and horrible candy to the kids without costume.  They were marshmallow brains with a powdery anti-flavor.  These things sucked out even the memory of candy you’ve loved in the past. Next year it’s wear a mask or forget the candy.

I checked with Jasper and he says it’s OK to write about his growth hormone treatment on the blog, which is a pretty good thing, since I’m having trouble writing about much else.

It’s not like he’s deformed for life, not like he’s terminally ill.  He isn’t even sick.  He’s just missing this one key component which would make him grow like other boys.  I’m relieved that they can say why he’s been like Peter Pan, stopped in childhood.

I don’t feel sorry for myself except maybe when we’re driving to Rochester for yet another appointment.  Those times it doesn’t take long to remind myself to be grateful for the luxury to be able to make the trip and have insurance coverage.  The testing and diagnosis has been  involved and expensive.  Insurance has paid the lion’s share of it.  I don’t know what we would have done without coverage.

So I’m not feeling sorry for myself, but I’m occasionally startled by how jealous I am of other people’s kids.  Chatting with other moms, the character of some of the stories they tell has left me out.  We still chuckle at misunderstandings, nod and make “awww cute” noises at the sweet things our kids do and say.  But there is a new class of story I can’t add anything to.  These are the puberty and growth spurt stories.

The ones which get me the most worked up are the kids who are 4 years younger than Jasper.  These are kids whose moms and dads carried them to the bus stop when Jasper was going to school.  Kids who used to look up to Jasper literally and figuratively.  He’s always hung out with  a mix of kids, many of them younger than he was.  It never bothered me that he chose to play with younger kids.  He wasn’t terribly mature for his age.  But when the ‘little kids’ started to catch up to and then tower over him, it made everything confusing and messy.When their voices changed Jasper and I both felt tricked, jilted in some way.

Lately when the parents get together- even the new with kids way younger than Jasper- when they get together and tell stories of boys outgrowing shoes and pants, and stories of younger siblings being awestruck at the new hair sprouting on their big brother or sister, I don’t feel that camaraderie.  I don’t feel the gleeful “Isn’t this a miraculous journey we’re taking?” Nor do I feel the exasperation of “Isn’t it a pain in the ass to have to keep buying new clothes before the old ones wear out?”

Years ago when Zach’s friends went through the same thing, he was about a year behind, but he progressed steadily and it never entered into my mind that he wouldn’t catch up.   I remember admiring and wondering at the new broad shoulders on the boys and the breasts on the girls.  It’s what’s supposed to happen.  I chuckled at how they all carried themselves self consciously at the 6 th grade graduation ceremony.  It was like someone  snuck into their houses in the night and gave them these new body parts.  My kid was behind, but he was on the same trajectory.  All the parents had a sort of camaraderie because our kids were all doing this miraculous metamorphosis.

When the subject of puberty and growth comes up I feel slightly angry.  I hate those people and their lanky or curvaceous kids.  I only hate them for a little while until I remind myself that they aren’t gloating, they’re marveling.  They’re proud.  I remember proud.  It feels good.  I still feel it when Jasper walks up and starts a conversation with a total stranger.

I remember some time around his 15th year, looking at Zach and seeing that he had man-hair on his legs and biceps which were sculpted and strong.  He was awkward, but at the same time he was coming to grips with the fact that he was stronger than his mom.  It made him proud, you could tell.  And it made me proud for some reason I can’t quite put my finger on.  Maybe it was along the lines of “all sorts of people make babies.  That’s easy.  Me? I made that manly person over there.  That’s right.  I made that.  Isn’t he handsome?”  Whether or not it was justified, I was proud.  And proud feels good.

Jealous feels bad.  This new feeling is the opposite of proud, which I used to think was ashamed.  It’s jealous.  Jealous makes me feel like a bad person, a mean person for not being able to celebrate with these other kids and their parents.  It’s the same feeling I had and still have some times when I see older people going about their lives.  By older I mean older than my mom when she died (so not very old at all).  I’m jealous that they get to be walking to the store, raking leaves or buying a newspaper. I’m jealous of one kid’s hairy armpits and another’s cracking voice.  Jealousy by proxy?

If I feel jealous, I imagine Jasper feels the same.  He’s tired of being mistaken for his mom on the phone, and he’d rather we didn’t discuss the latest kid to have his voice change.  Sometimes after he gets together with kids he hasn’t seen for a long time, he cries and storms around the house in frustration.  The first thing out of the other kids’ mouths is always, “JAsper! You’re exactly the same! You’re still short!”  They’re just dumb kids.

It’s weird to have a medical condition that is simply the absence of something you’ve never had to begin with.  Something you didn’t even miss until everyone else got it.  It’s hard to know where to direct your anger.  I’ve imagined what it would be like to never grow up.  What if you could live for a long long time, but you had to stay 12 forever?

It isn’t going to be that way here.  We should be able to start growth hormone shots in about a week.  Once they start, Jasper will probably grow very quickly, about twice as fast as a normal teenager.  That works out to be 3 to 4 inches per year.  We’re going to set up a camera in front of a measuring tape and try to take a picture every day once he starts his treatments.  Watch for it here.

I have a new niece.  She’s named Isla Marie.  She’s lovely.  Right after she was born my brother and I started suggesting names.  We got silly as we are sometimes wont to do. She was born a couple months ago, I thought it was time to let her mom know what our ideas were while she was in the hospital.  Maybe she’ll let us name the next baby.

Our newest family member didn’t have a name for hours and hours. Being the close knit family we are, we sprang into action and started a suggestion list (knowing in our heart of hearts that the name had already been picked, but the parents were shy about announcing it).

Name suggestions, just puttin em out there: Flower, pomegranate, K’shontell, Bonnie, Cadence, Muppet, Clara, Jestipher, Sullivante, Pot-pie, Maple-nut, Fuzzy, Dumpling, Suzie, Zinger, Alabaster, Dong-quai, Dove, Aplet, Verdigris, Hopiness, Mandrill, Sober, Ireland, Strato-cumulus, Tomorrow, Fistula, Bonus, Ligation, Gem, Parley, Love..

IF my mom were alive, she’d just call the baby whatever she wanted anyway, no matter what we named the child.  Either that, or she’d simply call the child “Baby”.  Here’s a poem for Baby:

Isla Marie

Dumpling, Darling, Puddnin’ pie
Cadence, Clara, Lorelei
Jestipher, Verdigris, Daisy,
Suzie-Q, Ireland, Mazy
Maple-nut, Zinger, Plowshare and Dove
Muppet, Puppet, Pinafore, Love
Mandrill, Marzipan, Fuzzyhead-Anne
Sober, Sariah, Fedorah or Stanne
Fecundity, Abstinence, Proliferation
Conception, Creation, Tubal Ligation
Parley, Patricia, Portence or Trial
Cirrus,Tomorrow, Fistula, Smile
Bubbly, Finnley, McInty, McCleire
Elsivir, Ellington, Ensign or Eire
Your Sisters and Brother
Your Dad and your Mother
Are waiting to call you Names

I’m in Rehab. Well a family member of mine is in rehab and the program they’re in asks loved ones to come and do some group work. This is good, bad, stupid and necessary.

It’s good (brilliant actually) because it allows for the doctors to get information from someone other than the addict.  Addicts are notoriously bad at telling the truth.  Having people close enough to have seen the problem, but who aren’t the addict themselves, seems really important to me.  I’m glad to be able to help illuminate the labyrinthian reality that was the life during the time our patient was actively using.

It’s also good because it reminds (if you’ve been through it before) or enlightens us about how normal we are in our abnormality.   How addiction has predictable effects on those close to the addict, not just him or herself.  It allows us to see that dishonesty, embarrassment, anger, fear and shame are part of sociology of alcoholism and drug abuse, not just something wrong with me or our family.  What a relief that is to know.

It’s bad because we are just ass-draggingly tired of dealing with the consequences of our addicts.  We’ve already picked up a lot of slack, done damage control, crisis intervention and rearranged our lives enough.  The program wants family members to come in for 3 days straight.  That’s one more drain on our already depleted resources.  Surprise, surprise, when we went around the room talking about what feelings we had today, the first 3 were resentful and frazzled.

It’s stupid because the technology hasn’t changed much in the last 20 years.  I’d wager the relapse rate hasn’t changed much either.  When the facilitator asked my dad and me to name two feelings we were having today, it seemed impossible that she didn’t know how ridiculous this was.  She did know.  She even cited Stewart Smalley.  But she still asked, “How does that make you feel?” repeatedly.  I think it’s kind of worthless to find out how we feel, unless it’s just an elaborate ploy to extract information from us, which I would approve of.

It’s also stupid because we’re all thrown together in this small group thing with strangers (cool because we realize how alike we all are) and expected to share intimately.  One thing The Group is supposed to do is watch us as we talk about 5 incidents when the addict was using and how we felt during those incidents.  The Group is then supposed to relay back to us how we appeared while we were speaking.  If we get teary eyed, they will comment on that.  If we shake our foot (and we do), they mention that.  If we are stiff and stoic, they let us know that.  As it turns out, there is no way to escape editorializing on what is essentially our public speaking style.

If you’re a fidgeter as my dad and I are, people will be watching and reporting back to you how you capped and uncapped your pen, shook your foot, bit your nails or played with your hair.  Let me tell you a little secret about fidgeters:  We’re nervous already.  Letting us know you’ll be watching for fidgeting is like telling people to not think about hippopotamus.  It’s counter productive unless you’re trying to make people neurotic.

It’s necessary because it recognizes that the nature of alcoholism and drug addiction causes it to be a family disease.  Treating just the addict won’t cut it.  Treating the whole family might not even cut it, but the odds are better.  If nothing else, all those people on 5th floor are safe for a couple weeks.

We put up a camera outside our house recently to capture the image (ideally) of the person or people who have been harvesting out of the cars in our neighborhood over the last few months. Years possibly, although it did stop for a few months. Sometimes it happens twice a week. We go out in the morning to find the glove box emptied onto the floor, the change slot emptied and the doors ajar.

We’ve lost more than one cell-phone, two electric razors, car-phone chargers, quarters, a large marble curio, 3 CD players, the occasional hand-held video game, a few prescription pills… Nothing of extremely high value, but it’s definitely an annoyance at best and a violation at worst.

After my window was smashed to get my stereo out of the car, I stopped locking the doors. The next time my stereo was taken, I didn’t have to replace a window, but my neighbor down the street did. Kind of a toss-up as to whether we’re better off locking the doors or not.  As a punishment for my negligence (once left the doors unlocked, once left the removable faceplate in the car) I have not replaced the CD player.

As for leaving things in the car, we try hard not to do it, but sometimes we fail, or a phone slips onto the floor unnoticed until we can’t find it and go look on line to see it’s being used to call New Orleans at 3 in the morning.  So although we sometimes make the mistake of leaving something of value in the car, it’s  totally lame for people to blame the day to day folks for an occasional oversight when there’s a guy whose roaming the alleys and streets with the sole intent of stealing other people’s stuff.

We’ve fantasized about sticking mouse-traps in the glove box, which is routinely emptied in the rifling. We talked about an explosive with a blue dye like they put in expensive clothes. We thought about staking out the park and waiting. I actually considered lacing appetizing snacks with sick-making stuff (which as you can see, was a thought that wasn’t well formed)… The whole business has caused much bad energy in our lives.

After a recent spate of riflings both in the alley and on the street, we finally followed through on one plan. We got a night-vision, motion activated camera, which Andy mounted aiming at our cars.

Last night, the second of two nights we’ve had the camera, we caught a guy on video going through my car. It’s kind of creepy and kind of surprising. I thought for sure it was kids. It isn’t. It looks like a middle aged white guy, and he’s riding a bike. he spends all of about 45 seconds going through my car and then rides off with a few coins (and sticky fingers because of the spilled pop in one of the little coin collectors. haha).
We put the video on YouTube and informed the neighbors, asking if they recognized the guy. We got a number of thank-yous from annoyed neighbors. We also got a couple objections to the idea of putting a camera in the alley. People found it disturbing and a little “big brother”. I’m glad we have both in the neighborhood. I’m going to have to disagree with them, however.

My first thought is, but hey, we’re the good guys, and we’re protecting all the good guys. True, but everybody (maybe not everybody, like not the guy rifling our cars) – almost everybody thinks they’re the forces of good, and not everybody is. So just because I think we are, doesn’t give me the right to invade other people’s privacy.

Fair, but I am of the opinion that other people’s privacy pretty much ends once they break into my car.  There is no reasonable expectation of privacy in a public alley.

My  next thought is, but this guy, or these guys, are really pissing me off. More than one bad decision has been made in response to being pissed off, so I guess that isn’t a great defense.

The camera is aimed in front of our garage at our cars, not down the length of the alley, not out into the park. We’re not looking in people’s windows, not policing the activity in the alley. We don’t even check the camera unless it looks like the cars have been tampered with. The system isn’t broadcast, or even close-circuited. We have to go remove the clip from the camera (with a ladder) and check it frame by frame.

This turned out to be a bit of a hitch when the sunflowers got tall enough to trigger the motion sensor.  We got frame after frame of black and white, night vision sunflowers waggling in the wind.  The truth is, I’m not even torn about this at all.  I really like the Predator Extinction Cam.

A friend of mine left last week to spend the year in South America. I’m going to miss her. She started out being the intense, shy and awkward daughter of my neighbor-friends. Somehow I’ve grown attached to her as a friend.

She’s the same age as my oldest son, which puts her in a category much like hummingbirds or other wild animals. When you run across one by itself and it deigns to stay in your company it’s a rare and wondrous thing. You know at any moment they may figure out you’re not one of them, and bolt. The first time she came berry picking with me, alone without her mom, it felt like a gift. When she reminded me in the following years that it was time for us to go picking, it was a different kind of gift. She seemed to enjoy my company.

It’s one thing for a hummingbird to accidentally alight on your shoulder, as wonderful as that is. It’s quite another for that little hummer to seek you out the following day and follow you around the yard while you garden. That’s the feeling I get every time Annie calls or shows up on my doorstep. It fades as we get into the back and forth of being friends, but I haven’t stopped being honored to have her show up in the first place.
I’m not saying I’m in awe of Annie every time we make contact. I’m not. I’m just aware what a great privilege it is to have a young person for a friend when you’re not a young person anymore yourself.

She’s not perfect, but overall she’s a remarkable young woman. She prepared and left for this trip to the bottom of the world while her parents were half-way across the country, something I never would have been able to do. She’s staying with a family in Chile and going to school. Impressive. While she’s in Chile I hope she remembers me and makes contact regularly.