The Mulanix Street Orchestra

I have some friends who are in a band. A good band.



I met them through some other friends and we just clicked! Even though they are all in their early twenties. One of them is asleep in my studio right now, and the lead singer is asleep in my kids' room (she has been sick and her roommate is out of town so she's nervous staying at her house alone, so I asked her to stay here and have been stuffing her with Mucinex and orange juice).

The one in the studio is also an art major. He has been using the studio to work on collage posters advertising their next show, which is this Friday, in town. They are also playing two shows in St. Louis next month-- one with a band that has been on David Letterman called An Horse. It's a band they are huge fans of, so playing with them means the world to them.

I think I have learned more about new music in the past few weeks than in the past twenty years.

J likes to hang out here because nobody knows where he is. It's a respite from his busy life and people constantly stopping by his house and making demands on him. It allows him to think and work on his art and be anonymous. Every day when I go out there, he has hung another poster or another piece of art or in some other way made it a cooler place to be.

At any rate: With all of these musicians hanging around playing guitar until the wee hours, I pulled out Tommy's guitar and learned to tune it (okay, still learning) and yesterday I learned two chords. I had to cut down my nails to be able to hold down the strings on the frets. It took me awhile to learn just two simple chords, so I just practice them over and over.

E, the singer with the cold, can really write the HELL out of lyrics. I am really amazed. They have a great sound (J is the drummer, but he plays multiple instruments, completely self-taught, and so is she).

I haven't really met or hung out with their bassist yet-- just have met him a couple of times at J's house.

At any rate, this has all been very fun and absorbing.

Sam has been at his father's since Monday, but the boys are here for a few hours today and I swear, this morning he is taller. He said he has noticed that he can look his father directly in the ear now. Good grief!

As for work, I am really busy right now! Which is great! I am a little leery because I am engaged to work on another huge grant this summer-- same grant, different clients. And we haven't really gotten started yet. I've been working on manuscripts for them, though, and a group in Toronto, so basically every day this week, I've been engaged with one manuscript or another. I have two more to do this week, and then one more next week. I just want to knock them out so I can get back to writing poetry! (I admit, the band and E in particular have inspired me to get back to it).

My knitting has stalled out since Christian's diagnosis-- I had to rip out a lot in the hospital because I kept messing up, but I am still "working" on a new shawl! With baby Alpaca. I think I'm focusing on guitar and poetry this summer, but I am sure the knitting will be in there too!

So, anyway, now you know (at least in part) why I've been so busy and too busy to blog!

In other news:

1) I hit a car in my drs parking lot on Dereck's birthday. Fun!

2) I am on anti-inflammatories for my rotary cuff and they are helping

3) The Wellbutrin is still helping me act like a normal person (aka, awake)

4) The children are now out of school!

Anything beyond that, well, I just can't remember because I had a running list of things to report in my head and then too many things happened to remember them all. But the important thing is that life is good and I'm having a hella lot of fun. I feel vibrantly alive-- which is the opposite of how I felt for most of winter.

I hope you are well!

Still alive

I just wanted to check in and say that I have given up on trying to update everything that is going on (good! mostly good!) because it's been so long. But I'm still here and will resume regular blogging tomorrow-ish.

Older, but not Wiser

Last night, I was ready to go to bed after watching House. But John texted me and asked if I wanted to hang out. Then Heather called and without violating either of their privacy, it was clear that they both sort of needed to hang out a bit last night, so I told them to come on over. Two other people joined us, and Dereck, so we all hung out and ended up toasting my birthday at midnight.

I went to bed finally at 1:00 a.m. I got up at 3:00 a.m. to test Christian's sugar. I got up at 6:00 a.m. and went to his bedroom to test his sugar before having him leave his warm covers for his shot and then his bath before breakfast. (He eats 1/2 hour after his insulin shot, and he is not supposed to go back to sleep in that time).

While I was in my bathrobe in Christian's room, I heard my friend Chris's voice in the kitchen, talking to Sam. I thought, "Why is Chris in my kitchen at 6:00 a.m.?"

By the time I went in to find out, Chris was gone and had left: A full thermos of coffee; additional packets of Paneira coffee (we don't have a Paneira in town, by the way); a loaf of bread from Paneira, and a lovely fruit and cheese danish tart. Oh, and a lovely, pottery forest green pitcher filled with brightly colored sunflowers, with a card from him and Talia. Isn't that a nice way to wake up???

I tried several times to return to sleep today, but the phone rang, and then I had to de-skin some chicken breast for dinner because Dash had to run to campus. And then I had too much coffee, so every time I tried to lie down, I couldn't sleep. I had coffee with a friend this morning, and then Heather and Chris came over for some House this afternoon. So, it was a great birthday, except that I am psychotically tired right now, and am expected to show up at karaoke because not only is it my birthday, it's a BIG birthday. I am so tired, I was trying to help Christian with his sixth grade math; I didn't understand it, so I was snapping at Dereck, who was trying to help. Heather was nodding off at the table, and by then, Chris has left for work and Talia and John had gone to play rehearsal.

Dereck finished up the homework, while I dozed on the couch. Heather left to go brush her teeth. Now, I am counting the minutes until I put the little ones to bed and wondering if I can lie down for an hour before karaoke. On the one hand, I really need to go to sleep. That would be the responsible thing to do.

In these situations, I always think of a line from the great Richard Russo book Straight Man. The lead character is a beleaguered chair of an English department at a university in a small town. His wife is out of town. He has excruciating gall stones. He has recently caught up with an old friend whom he doesn't even particularly like. They are in a bar, and his friend has engaged in a fight. So, our weary narrator thinks about his pain, how mad his wife will be, his job, and says, as he rises to join the fight anyway, "We do not want what is good for us."

That has resonated with me for the past ten-to-fifteen years since I read the book. Sadly, I have based some unfortunate decisions (that usually involve staying up way too late) on the fact that I also do not want what is good for me.

I'm going to karaoke.

Why doesn't anybody at the hospital know how to pronounce the word "Christian"?

In spite of my Wellbutrin and going to bed at a reasonable time last night, I feel tired today. Like, I should get up and go get the list of Christian's blood sugars from the weekend and update the computer form, but I don't want to go to the effort. Days like this are almost never productive.

With one notable exception, it has been an exhausting four days. First Tommy got a fever, and then Christian did. And fevers will never be the same in this house again. Fevers cause blood sugars to spike. And when that happens, you have to introduce urine testing for ketones and additional insulin into the mix. Giving Christian additional insulin makes me very nervous. I hate it.

He stayed home from school Thursday with Tommy (both had fevers). Then, Tommy's went away, and Christian's got higher. Friday morning, it was 102.6 and he complained of chest pain. When his blood sugar gets high, he gets paler, until he gets the flush of fever which is too bright, two red stains on his cheek.

I called the doctor and his office was closed. So, I called our team in Columbia and they recommended that I take him to the ER just to be seen. So, I gave him his lunch and packed his sugar meter (what is that thing even called?), snacks, glucose tablets, insulin of both kinds (slow acting and fast) and needles, my laptop, video games, cell phone and charter, novels, and off we went. I told him, "If we pack as though we will spend the night, maybe we'll get out of there before dinner."

Well. If you take a child into the ER and say, "He has juvenile diabetes," you will not have to wait. I have never gotten such fast (urgent) service in my life. In fact, it wasn't even until they had strapped heart and blood pressure monitors on him that they asked why we were there. They did a blood panel and an X-ray after listening to him. They determined that what he had was viral and sent us home. We were home in time for his afternoon snack.

Friday night was a mish-mash of dinner with friends and watching a little bit of the Battlestar Galactica preview show Caprica. However, with Christian's fever, I had been up more frequently checking his blood sugars and I knew I would be again, so we called it an early night.

His blood sugars plummeted during the night because we had to give him extra insulin Friday night. So, we'd wake him and give him milk and then back to sleep for a couple of hours. Rinse, repeat.

On Saturday, he still had a temperature, but was feeling better. Dereck had plans to take the kids to a snake exhibit on campus, and my friend Jamie was in town this weekend and wanted to go out for a cocktail. Dereck left me lying on the bed with a sinus headache and wondering how I could manage to duck out of my drink with Jamie. So, I called my friend Talia and invited her to join us. She and Jamie came here first. I tried to convince them that we should just stay home and drink cider, but they wanted to go out. So, Jamie drove us up to Il Spazio... where Dereck had a surprise party waiting for me! For my 40th birthday, which is tomorrow.

I think I have had maybe one other surprise party, but the other one was notably smaller: When I was 18, my friend Diana and some other friends surprised me for my birthday and took me out.

This one took the cake: The kids had known about the party for two weeks, but nobody blabbed. Unbelievable. Sam said, "Why weren't you suspicious?" and I looked at him and said, "Because today isn't my birthday!"

My headache vanished and I was able to enjoy good friends, appetizers, and decadent cake. A few friends followed us home for dinner where we got some chicken and side dishes for supper.

And then. I was calculating Christian's insulin at 6pm because he needed to go up a step for his evening dose. But I got the morning dose in my head. I gave him 22 units of insulin, instead of 11. I said, "Oh, I have to give you one more, because I forgot to go up!" He and Dereck said, "Wait. The evening dose should have been 11."

I don't know when I have been more panicky. I gave my kid twice his dose of insulin! Fuck! So, I got hold of the Team Doctor on call and he said that it's a common error. He told me I wasn't a bad mother. He said, "Just check him every hour or two and feed him sugary drinks." So, I ran out for pop and Skittles and we checked him every hour or two. And gave him milk and chocolate milk again, depending on how low his sugar was.

Yesterday, his blood sugars were still wonky from the insulin, but his fever was much lower. He did have a temperature though, so I have kept him home today. He is much better today, but I just wanted him to have one stable day. I spoke with the school nurse and she said, "Don't rush him back. Don't feel like you have to send him back tomorrow either. Kids have been out with this for a week, and they don't have diabetes."

It's a little like diabetes is a trump card for everything. It could go to our heads if we let it.

The other night, Christian wanted to play on the computer before bed. I told him that because he was sick, he could either go lie down in bed and read or go lie down on the couch and watch TV with Tommy. He said, "If you force me to make this decision, I'll just get sicker."

I said, "You can lie down in bed or lie down on the couch. I am your mother, and you are sick. And you are not going to manipulate me this way."

He apologized immediately and went to bed. Wow, I can see how some kids might use illness as a way to get what they want! If you don't do what I want, I'll stress myself out so my blood sugars spike!

Oh, hell no.

My dad is an asthma researcher. Self-management. He said that when he began, a lot of the kids at the center where he worked would induce asthma attacks because the hospital was fun: TV, ice cream, no school work. So, he took away the TV and the ice cream and brought back the school work. Suddenly, the rate of hospitalizations went down. They told me down at the hospital in Columbia that some kids will impose high blood sugars with ketones so they can be at the hospital-- because the hospital is nicer than where they live.

That breaks my heart.

Jamie and his wife Karen gave me a book of poetry by C.D. Wright called Rising, Falling, and Hovering. I started reading it yesterday afternoon and it is beautiful, but also writes unflinchingly of poverty and war in Mexico, Central America, Iraq. Situations that I, sitting in my living room, cannot imagine. Cannot fathom. Noam Chomsky says our society breeds us for apathy. Isn't that true? Isn't that horrifying?

I don't know what to do about it. I should pack up and move to a third world country and make things better. Maybe when I am not so busy poking a small boy with sharp instruments every two hours, I will be able to go out and make the world a better place. Until then, I am afraid I am very much tied to my homestead.

Christian's diabetes reminds me of when the boys were newborns, only instead of them waking me with their cries, my alarm wakes me and I pull on my robe and quietly go to his bedside to check his blood sugar. It's both nice and a little overwhelming to be so needed. The blood sugar is getting to be routine; the shots aren't so much yet. I asked at the emergency room if there was a trick to not hurting him and at the same time checking to make sure I haven't hit a vein (by pulling back on the plunger). The nurse told me no. But this morning when I had my own blood sugars tested for insulin resistance, the nurse told me simply to keep the needle still.

Now, that wasn't so hard, was it?

I am lucky: Christian is okay. Yesterday was the 6 year anniversary of Sam being hit by a car. He is okay. Tommy was playing with our friend Heather's mandolin all Saturday afternoon. He was writing songs, and Jamie was writing them down, recording them, and paying Tommy $5 to perform. Yesterday, Tommy found a mandolin on Ebay for $27, and we got it for him.

School will be out soon. Summer will be upon us. I don't have any grants due this week. Yet, I do have work to do. Even though I have often felt like I have been pummeled by the universe this year, I still know I'm lucky.

I do.

Today was better... but weird. It's like yesterday there was a huge earthquake, and so today I was just sort of wading through the tremors. The silence was deafening.

Sorry I can't be more specific. But you know how it is. I went for a walk with a friend tonight to catch up and it took me AN HOUR just to tell her about YESTERDAY. By the end of it, she was slightly in tears on my behalf. I do sort of feel like I must have a bull's eye on my forehead lately.

But, things will work out.

How will they?

I don't know yet.

(Sorry, a little Shakespeare in Love for you.)

That's about all I've got. Except that Tommy and Christian both have fevers (Christian's is very low, but now I have to practice due diligence), so I may have two kids home tomorrow.

Sam is a little miffed that his temperature is normal. I can't say I blame him, but I'm glad somebody is healthy.

Dancing Through Life

Today was a no-good, terrible, awful day. And I mean that for me. No other members of my family are represented by that statement, though Christian had his lowest low at school today-- and it was a half hour AFTER his morning snack! And he has had the same breakfast and snack with me that he had all of last week. So, I am a bit baffled. But, he had a glucose tab, then some milk, retested a half hour later, and he was fine. I appreciated the school nurse calling.

Back to me (because although I find Christian's diabetes interesting, I am not sure I want this to become Christian's Juvenile Diabetes Blog). The day was intense, stressful, and long. But at least, thanks to my Wellbutrin, I got to stay awake for all of it. Yay me.

I can't write about why it was bad. Let's just say that I'll live, it wasn't tragic, and everything will be okay.

One of the things I do, one of my callings right now, is to drive my friend John around town. He lives near me, and due to a series of unfortunate events, he is car-less. Our town is small, and it only takes me about five minutes to drive him anywhere he needs to go; it takes him considerably longer to hoof it. And he also has arthritis in his knees (and he is only 25, poor kid!). So, this evening, before dinner, I left Christian in Dereck's care (after his insulin shot, and with semi-low glucose, and a timer set for when he should start eating) and went to get John from work and take him to his next destination.

I have been listening to the Wicked soundtrack non-stop lately, and watching every YouTube video about it that I can find. Usually, I listen to "Defying Gravity" in the car, and belt it (despite my horrible cold). I'll never be Idina Menzel, but man. She can sure sing. However, Christian and I had been talking about Wicked, and I was telling him about when Glinda and Elphaba say goodbye, and so I listened to "For Good" on the way to get John. And by the time I got to him, I had made myself cry. Fortunately, John got me hooked on Wicked to begin with, so he didn't mind, and we listened to it again. By the time we stopped, I was weeping, and John just hugged me. I said, "I had a bad day." He asked if I wanted to go for a drive, but I told him I was okay and I'd see him later. Then I came home and listened to it just one more time, and cried in the driveway.

The song reminds me of him, but it also reminds me of her, my Glinda, or my Elphaba, whichever you choose. So, I came home and copied the lyrics and sent them to her in an email. We only talk now a couple of times a year, but because I knew her, I have been changed for good.

I just came out to the studio to work because this is where my laptop has been living. And by work, I mean blog. And by "where my laptop has been living," I mean that I can smoke out here.

You'll be happy and proud of me to know that I went to my doctor on Friday, FINALLY. I had made the appointment at the same time I wanted to have Christian checked out for an ear infection... Well, I think we all know how well that turned out (on the plus side, they did cure the ear infection in one night, with a single, IV dose of anti-biotics).

So, I walked in with my list and said, "Please keep in mind, I made this appointment BEFORE what happened with Christian, so let's just keep that out of the equation for now."

I was nearly sure that he would tell me that my fatigue was caused by going to bed too late and then having my sleep interrupted by driving kids to school and my subsequent returns to bed. But when I asked about that, he started shaking his head almost immediately.

Apparently, when you've been on anti-depressants long enough, you can have a condition called a seratonin poop-out. I am not kidding. Google it. You will also start to see words strung along with it. Words like chronic. Words like fatigue. Words like syndrome. All strung together, for convenience's sake. Chronic fatigue syndrome.

Basically, I need something else to compensate for the fact that my body doesn't produce its own seratonin anymore. So, he prescribed wellbutrin. The fact that I am not nappy this afternoon MIGHT be a placebo affect. I mean, I probably could nap. But I tried yesterday afternoon and... couldn't. Even though I was on an anti-inflammatory drug for my sore rotator cuff, and I felt dizzy for hours. I didn't like that drug at all, so I stopped taking it.

We also discussed my weight and insulin resistance. He is going to check me for that on April 27 (I have a massive deadline this week, so I can't afford to starve, drink disgusting sweet drinks, and then run back and forth for them to check my blood five times).

Then he dangled this little tidbit in front of me: There IS a drug that can help with the insulin resistance. And it can cause people to lose weight. A LOT of weight. It's NOT a weight loss drug, however (but if it walks like a duck...).

Here's the catch.

I have to quit smoking first. Because then I'll gain about ten pounds, and then I can go on the drug and I'll lose more. BUT, if I quit smoking after I've lost a lot of weight, I'll gain it all back. My body will be confused. So, naturally, I said...

"Well, I'm not quitting smoking right now..."

Of course, what he failed to point out is that if I just NEVER quit smoking, all will be fine. Yes? No? Well, a girl has to try.

So, now I'm mulling that over.

I'm willing to try following the low carb diet right now, though. And I must admit, I am hungrier. Christian is allowed to have more carbs than I am, so he's always full. I have been drinking tons of water a la Jennifer Aniston in an attempt to pee so much that I don't notice that I'm hungry. But I notice. It makes me feel sorry (eye roll) for skinny celebrities because they must be hungry ALL THE TIME. But, wow, when you really have to learn about portion sizes you realize, hey, dude, I was eating about, well, a LOT more carbs than I should have.

Christian is doing well at his father's. We all (Dereck, their father, the boys and I) went out to lunch for Chinese food today to see what Chris can have. We even weighed stuff. Let's just say that it's not entirely all clear and that occasionally, he can have Chinese food, and once again, lows are worse than highs. He has been having enough low readings lately that none of us minded if he went a little high today, but I don't think he did: He was all about chicken on a stick.

Now, I should go look at a grant application. The client called me on Thursday: I still don't have a contract, and they haven't heard from the contract office. They had to warn me that there is a possibility that I won't get paid for this work. Well. I have a four-year relationship with this client: What am I supposed to do? Ditch them? On the other side, they don't want to take advantage of me. So, I told them that I just wouldn't stay up all night or put my health at risk. And since I seem not to be napping, I might as well go work on it.

I hope you are all enjoying a nice Sunday.