Tuesday, April 28, 2009

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.

Monday, April 27, 2009

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.

Wednesday, April 22, 2009

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.

Tuesday, April 21, 2009

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.

Sunday, April 19, 2009

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.

Thursday, April 16, 2009

First day back at school

I am sending this as a group letter because I have a cold and fever and I want you all to have this information-- I just don't want to type it out a million times or talk on the phone more than I have to.

I just wanted to let you know how Chris's school day is going (I just talked to the nurse). We brought in a jar of peanut butter for his snack so he can dip his pretzels (and the nurse bought a loaf of bread in case he has a low), his lunch with his turkey sandwich on a frozen pack, teddy grahams, grapes, and he is having chocolate milk for lunch. We also made sure that all of his teachers have glucose tabs in the classroom, and they gave him an index card to hold up saying, "I need glucose," and he has another one with our information and the fact that he has diabetes and his name.

Apparently, he had a low at 11:30. He didn't hesitate; even though there was a substitute teacher in the classroom, the sub gave him a glucose tab and when they tested him, he was at 69. So, they took him right to eat lunch, and they will test him in 30 minutes (I just talked to the nurse) to make sure it's up. But they said it was all handled with great expediency.

Jill the Dietitian just called too and was happy to hear how everything is going and asked about the lows. I will send her a follow-up email letting her know about today at school.

I am going on Christian's morning field trip with him, School Nurse said that if you want to go on the all-day fishing field trip, she'd pack everything he needs (the peanutbutter, we can bring extra carbs, the glucose, little cups and ketone strips, his blood glucose meter) in his storage tub so you'd have it. And I'd plan on giving him an extra snack that day in the afternoon or even morning if he's really active.

He was low again at 3 am (69) so I gave milk and then retested half hour later. I didn't re-test him yesterday because I figured it was okay, but last night at bedtime, he was 157, and so when he dropped to 69, I re-tested him because I wanted to make sure I was right about him going up with the milk. And he was in the 140s when I re-tested. So, I'd just do whatever you feel comfortable with at 3am when it comes to re-testing (but also just be prepared to give him milk).

I think the fact that nobody has trouble with the injections is more than half the battle. The diet is even fun. I'd love to come up and see him-- and maybe to go out for Chinese, because that's something I'm going to have to figure out with him too.

Okay, I think that's it for now!

Hey, could you forward this to your sister for me? I am cc-ing my folks, the dietitian, and the nurse educator on this too, because it's just easier than typing or saying a million times. I haven't called your sister because I am sick and talk on the phone as little as needed, but I know she would love to hear an update.


Wednesday, April 15, 2009

Feverish ramblings

I am sorry for no updates once we got home!

I have a fever, a really stuffy nose, a sore throat and chills. Christian has pink cheeks, a good appetite, a good attitude, and good blood sugar levels. We are all following the diet, and so far only Tommy doesn't seem to get enough to eat from it, so of course, I let him eat more. (Okay, I admit-- I am hungrier on the diet too, but I know I'll get over it).

I am getting ready to hit the sack, but I just wanted to check in. I will leave you with this link that my dad sent to me today.

Turn up your volume. Seriously, you should watch this.

Sunday, April 12, 2009

Slowly, the onion layers of change are peeling away and revealing new, inner, shiny parts of themselves to me. Some of our friends came to visit tonight. I suspected Christian was tired and wanted him to go to bed. Dereck took our friends down the hall to a conference room to chat, and I couldn't bring myself to leave Christian alone in his hospital bed in the dark. I sat with him until his breathing fell into a steady rhythm, but even just going down the hall felt far away.

Chris has been sitting in my arms on the bed while we watch movies, and it moves me that I still have the power to make it all better. Even if that isn't really true, he still believes it.

He did admit one fear to me tonight though: He is reluctant to leave the hospital. (First he asked me what the word reluctant meant. Then he used it.) At the hospital, he feels safe: They are on top of his insulin, his meals, his blood sugar checks. I've given him one shot of insulin and checked his blood sugar one time, and helped him pick out meals that other people prepare and bring him. I can't seem very capable of handling this right now, even though I have raised him to this age.

I reassured him that he will be safe at home. It's my job to keep him safe. And I also realized that I won't feel comfortable letting Sam babysit his brothers at night for a very long time. I don't know when I'll feel comfortable with that. Nor do I feel comfortable hiring a sitter. This is my responsibility. I didn't really think about that until I was leaving the room tonight to go down the hall.

I haven't really attended karaoke regularly for months now. I don't know why-- fatigue, depression, just feeling more like staying at home where I can smoke in the studio [we can't smoke in our bars anymore, and going outside is, well, cold mostly lately] and watch House any time I want to.

Now, I won't go because I can't leave Christian. What if something happened? We won't even test his blood sugar until 3 a.m. And we will only do that for a couple of weeks. When will we be able to let that go?

It's an incredibly powerful protective instinct, this mothering. Do you know that I secretly think that I love my children more than any other mother on earth loves her children? And when other people talk about loving their children, my inner self shakes her head sadly and thinks, "Oh, you don't even know about loving your children. I have the market cornered on that."

But it's also true that my children haven't needed me constantly in the ways they did when they were younger. They have grown very independent. We are all still very, very close (I cannot blog about the personal conversations I have had this year with Christian, but trust me: We're close). Now, suddenly, I am in charge of making every meal again instead of trusting him to make a sandwich. He needs me again. He really, really needs me.

Even though this SUCKS and I wish so much for him that I could take this away, I can't also help but feel flattered to be so needed again. And I also secretly hope that the structure this will give to our lives will help lift me out of my stupor of fatigue and depression. This sharpens things and gives me an intense focus. When I go to the doctor on Friday, I am going to tell him either to test me for every single thing that could make me so tired, or I will find a doctor who will. I can't afford this bullshit any longer. My son needs me.

Saturday, April 11, 2009

Hell Hath No Fury

I found out today how I am handling things in a rather unexpected way. I mean, I have felt fine. And last night, after I grew a pair, I got a good night's sleep. After Christian's midnight snack, I crawled into the empty bed and slept. In fact, I completely slept through Christian's breakfast, and woke at 8 a.m. when our dietitian came in to talk to Chris.

Christian and I went and used the bathing room and I put up a curtain between us. (It's a huge room, with a separate tub and shower, so we had complete privacy). He bathed while I showered, and we were ready at 9 a.m. when his dad and brothers and Dereck got here for our education.

Let me also say that 1) Everyone is getting along extremely well; and 2) Tommy and Sam are taking this like champs. They have been cooperative, tender, and well-behaved and attentive during all of the education. We all sit around a little table. Sam is like a sponge, absorbing everything. He is already trying to figure out how to bind insulin to food to eliminate shots. Tommy is learning everything quickly; he volunteered to give Christian his shots in the morning so I could sleep in.

Frankly, that is going to be the biggest change for me. Sam has been getting his brothers up and shepherding them through their mornings for awhile; they get me up when it's time to drive them. I will be getting up at 6 a.m. now, no matter what. In the summer and weekends, there can maybe be an hour of variation. For night owls like myself, this is going to be a challenge. However, there is simply no alternative. One does what one has to do.

After lunch, Dereck and I took off for some shopping. I wanted to get a pair of Chaco sandals for summer, for my birthday, which is coming up in two weeks. It's a big one too. So, we drove downtown and went into a nice shoe shop that had a lot of great selection. I asked to try on a pair.

Now, Chacos have a long, continuous strap that takes some education to figure out. The salesgirl simply dropped them at my feet. I struggled with them and asked for a little help. She came over and tugged on them a little and said that there are directions on the box when you buy them. Well, I'm not going to buy them if I can't even try them on, am I? Then, she went back to standing boredly by the register. There were no other customers.

After wrestling for a few more minutes, I slammed down the shoes, slid my feet into my clogs, and stormed past the salesgirl and out of the store. That is the Jen Equivalent of a huge tantrum/confrontation. I didn't say anything to her, but I got out of the store and let loose a flood of obscenities, and stormed down the street angrily. I bet people thought I was insane. I think among the things I said was, "Is it too much to expect to have a little help trying on shoes when YOUR SON IS IN THE HOSPITAL WITH GODDAMN FUCKING DIABETES?"

That was really my first clue that I may be in a little denial, and maybe I have some residual issues that will surface. Hmmm.

Eventually, I calmed down, found another shop that carries the shoes and boasts a very nice salesgirl (Alpine in Columbia, Missouri). Dereck got me the shoes for my birthday, and I wore them out of the store. Then we went to Jimmy Johns and got a sandwich. We sat outside in the sunshine and ate and talked about our new life with diabetes.

Afterwards, we went to the mall. We picked up Harry Potter and the Order of the Pheonix at Christian's request, and a video game that didn't end up working on either of our laptops (dammit). I may have also picked up Enchanted for myself to watch... And I may have gotten it because it has Idina Menzel in it, and right now I am slightly obsessed with both Rent and Wicked. Idina Menzel originated the roles of Maureen and Elphaba in both shows.

We also went to Mr. Bulky's candy and got some sugar free candy for Christian. However, management of diabetes has changed ENORMOUSLY from what I had heard about it when I was growing up. Case in point: Chris had picked out a solid chocolate bunny for Easter before he was diagnosed. Boy, he was so bummed about Easter and that bunny. But we met with the dietitian today and mentioned the bunny. We checked the carbs on the back, and when we were planning his meals for Sunday, we included 1/4 of the bunny for one meal. Isn't that incredible? There is NOTHING he CANNOT have anymore. It's just timing and planning. This is NOT your grandmother's diabetes.

As much as everyone here has been supportive and upbeat and great, and as much as I think I am really coping with this very well, underlying everything is the appalling knowledge that my CHILD has a PERMANENT disease that could KILL him. I mean, my paternal grandmother (no biological relation) died from complications due to diabetes. We found out today that we can expect Christian to have low blood sugars (which are worse than the highs) as often as every other day. That is absolutely, forgive me for my repetition here, appalling. Suddenly, I have to turn into hyper-aware mother when I have always been easy-going mother.

Don't get me wrong: I am completely up to the task. And you will be happy to know that at the same time I scheduled Christian's appointment for his ear infection (which they treated in the ER Thursday night in one dose, thankfully, though he has such a runny nose that I suspect all he will remember about this weekend is blowing his nose), I also scheduled an appointment for myself for this Friday to talk about my ongoing depression/fatigue. Yay me.

Anyway, backing up, we got some sugar-free candy, and a gift bag, some Propel water that he can have (anything less than 20 calories is a "free food." Propel has ten calories a pop; this means he shouldn't have more than one... well, I don't really know the time frame, so maybe we'll just stick with one. I'll ask the dietitian on Monday.

Oh, the things that enter your head when you get a diagnosis like this: I have been making the kids walk home from school, despite Christian's heavy backpack. He is dancing around the room, and both Dereck and I realized that he hasn't really done his little Asperger's dancing for awhile. There are roses in his cheeks. I took him to the doctor last YEAR sometime or maybe before because he had dark circles under his eyes and sallow skin. I thought he was anemic. The professionals here have guessed that Christian has had diabetes for at least three months. I think he has probably had it for more like a year. Maybe more. And believe me, typing that makes me want to weep with shame.

I have also made an appointment for Sam. Yay me. Let the healing begin.

A long phone call later and I think I am ready to close this out. I bought myself some new clothes today, because I think I've gained some weight this winter. That is depressing, but I have enough other crap going on, so I am not going to focus on that and become more depressed. I just got some clothes that fit me better, and I'm moving forward. I am going to, in this order, figure out my shit: 1) Learn all there is to know about keeping Christian healthy; 2) Keep myself healthy; and 3) Get Sam the care he needs. Sam is only number 3 because his appointment happens to follow mine.

On a final note, Dereck's parents asked today if I wanted anything in particular for my birthday. My first thought was, "Yes, I want Christian not to have diabetes anymore." What came out of my mouth was, "I like Amazon gift certificates."

Isn't that just how life goes? We want our children not to have diabetes anymore, and we make do with Amazon gift certificates. Such is life without a wife and kids to do the dishes.

Friday, April 10, 2009

From what I can tell, having juvenile diabetes in today's world is not unlike having a free, lifetime membership to Weight Watchers.

Gallows humor

Last night, I texted two friends (who would get and appreciate this): "Trying to decide which is worse: Gay sex, or sleeping in this chair."

One of them is gay, incidentally, and I have no problem with gay sex. It's a comment based on something we say often-- probably not translating well here, but there it is. This blog is also a journal for me.

One texted back almost immediately (1:53 a.m.): "The chair."

John told me yesterday that I should enjoy the learning and ask as many questions as possible, but I should also freely make fun of people. In that light, I will say that when I met the diabetes team leader, who was perky and skinny and tan, while I was sitting, bleary-eyed, in my pajamas, I mentioned that my knowledge of diabetes was almost completely academic.

She asked me if I worked in academia.


Eat, Drink, Pee

Christian is enjoying his breakfast of cornflakes, milk, and apple juice. He has twice as much liquid as solid. He has to pee into this plastic tub in the bathroom, and they keep track of everything going in and out.

Last night after he fell asleep, the nurse showed me the shower room, the nutrition room (from which I took a milk in the futile hopes that it would help me sleep), and told me about the Ronald McDonald room. I guess they might have a tad better sleeping arrangements there than this foldout chair that I have.

I called maintenance to have the room temperature lowered just two degrees. It makes a difference.

After thrashing around on the chair, I spied a Mommy-sized space on Christian's bed, so I climbed in with him and was finally able to sleep. Until they woke him up to pee at 5:30 and gave him an insulin shot. And then woke him at 6:00 for breakfast. He asked where my breakfast was, and I laughed and told him that I'm on my own. I'll find something later. Right now, sleep is so much more important. So, I'm chatting with him and writing to you.

I asked him finally this morning if he knew what diabetes was. He didn't, of course, so I gave him a rudimentary explanation:

You have an organ called a pancreas. It makes insulin that tells your body what to do with the sugar it eats, tells it to send the sugar to your cells. They told us yesterday that they think sometimes a virus attacks the pancreas, reducing and slowly killing off insulin production. So, when your body doesn't produce insulin, your sugar stays in your blood. When the levels rise to the degree that they had in Christian, sometimes it can ruin your kidneys and lead to all kinds of bad things.

So, he will learn to eat foods that don't put more sugar into his blood than his insulin shots can tell it where to go. And if he were to do something like eat three really sugary doughnuts, he'd learn that he has to take more insulin to make up for that.

I hope I have it right and haven't confused him too much.

I realized two things last night:

1) Nobody on Lost or Battlestar Galactica had diabetes. It colors how I view those shows now, just a bit. Diabetes would have been a genuine tragedy. But it also seems somehow unfair that patients with diabetes don't get to share in the fun.

2) I need to ask about getting Christian a medic alert bracelet.

Christian just spilled a little juice. Got to go.

Thursday, April 9, 2009

I don't yet have a title for this post. A night to remember? Too corny?

I could KICK myself for not seeing that Christian's symptoms pointed to Juvenile Diabetes. He drinks a lot and pees often. I know that this can mean diabetes. So, why did other explanations always seem plausible?

This actually started last night, with a discussion I had with Sam. I don't really want to get into that here right now, but it resulted in my deciding he could stay home today. Take a mental health day. Let's just say that in some ways, he really does take after his mother.

So, this morning when Christian told me he had an ear ache and had felt faint in the tub, I wasn't inclined to keep him home. I told him that if you stand up quickly after being in hot water, you will feel faint. This in spite of his saying he had felt faint when he got up to use the bathroom last weekend. I took his temperature. No fever. I told him to go see the school nurse, and if she said he looked like he had an ear infection, I'd take him to the doctor.

The phone started ringing as soon as I walked through the door after dropping them off. So, I went back to get Christian, whose ear hurt and who was also tired from being up with his sore ear. I called and got an appointment with the doctor for this afternoon. Their dad was to take the kids for the weekend, so I called and had him meet me at the dr. with Tommy.

When we got to the doctor, I mentioned that Christian has gotten really skinny lately, and I wanted them to see if maybe he was anemic, because he seemed... frail.

Weighing him revealed an 8 pound weight loss since February. That sounds like a Will Smith movie, doesn't it? Sorry, poor joke. Anyway, our dr. asked the student physician what is most likely to cause that kind of weight loss in a child. The student physician didn't know. The doc said they could test for diabetes immediately. I said, "Doesn't he have to fast and drink a disgusting liquid?" No, with the kind of weight loss he has had, if his blood sugar was above 300, this test would detect it.

My ex asked what normal blood sugars would be: 60-100. Christian's couldn't be counted by their office's machine, indicating that it was over 500.

I didn't know at the time, but this can lead to high PH levels and the breakdown of kidney function. Basically, he could have slid into coma or death. Just gone to sleep...

Fortunately, Christian's blood isn't the kind that becomes acidic. So, he probably would have simply continued to lose weight until we freaked out and took him in. Still, it was a fortuitous ear infection. As my ex wryly noted, that school nurse probably deserves a gift basket.

The doc sent us over to the ER. They gave him an IV and treated his ear infection and hydrated him. An arterial blood oxygen test showed us that his kidneys were fine. Big, huge relief. I mean, I could see it in our physician's eyes (bless the man, he had been planning to leave the office early and instead ended up with us in the hospital).

The whole time were were at the ER, poor Tommy and Sam were hanging out in the waiting room until Dereck came and brought me an emergency bag with knitting, laptop, and phone charger in it and took them home for dinner.

Then, once we figured out he was stable in the hospital, they contacted the children's floor down in Columbia and I drove him down here. They insisted that he come tonight. They have now started him on insulin with a snack: pb and j with two graham crackers and two things of 2% milk. I was surprised to see so many carbs, but the nurse told me that he will eventually be allowed to eat ANYTHING, as long as he makes up for it with the insulin.

The reason for the hospitalization is that they spend 4-5 days here with us training all of us in nutrition, diet, and insulin shots. We are going to get all of the tools we need here to go home with his diabetes. I know that this is going to mean a lot of changes for all of us. However, after first worrying whether or not he had something like leukemia causing his weight loss and THEN worrying about his kidneys and him slipping into a coma, the rest of it all seems pretty manageable.

Christian is also getting over his initial shock. He is greatly relieved that he can still have soda-- it just has to be Diet now and forever. I think the whole family will be healthier once we learn about how to manage Christian's diet. It's hard to justify eating a bunch of crap when your kid isn't allowed to.

I felt like a bad mother when they asked if anybody smoked. Yes, I do. The nurse (who is really very nice) told me primly that I'd have to leave the entire campus of the hospital to smoke. Grrrr. Well, Missy, what you don't know is that I'll be FINE while I'm here. So there.

Now that Christian has had his snack, I'm shutting off Harry Potter and the lights, and I'll unfold my chair and set it up so we can try to get some sleep. I doubt I'll get much while we are here, which sucks. But wow, things could be so much worse.

Monday, April 6, 2009

I'm just waiting on a phone call

As it so often happens in this business, suddenly work and clients are pouring in. I stopped typing for a minute to find wood to knock on. I settled for the metal locker in my studio because that was the closest thing, and it's the thought that counts.

This Monday morning, I am sitting wearily in my studio waiting for a phone call. I am also sitting here with Chris, and we are drinking coffee and watching Lost. Not that we have given up on House, of course. We are simply branching out.

Friday, I finished some work I had had, and today I need to do more. But right now, I'm too sleepy to do anything but type a few thoughts and drink my coffee and, well, a cigarette or two won't hurt...

On Friday night, I had a headache so I stayed home. Dereck had gone out for dinner with a thesis committee he was on. While I was at home watching House with Chris (I made him watch the season finale of Season 4, which is awesome), my friend Jamie called. Jamie is a poet. He and his wife Karen, who is also a poet, were going to come by with their friend Mary. They didn't end up coming by. Dereck told me later that Mary is also a poet, and she was giving a reading on Saturday. It turns out there was a whole conference last weekend that I would have loved to have gone to, but that's life.

So, Saturday afternoon, I went to hear Mary read. And she was wonderful. Absolutely wonderful. Of course, none of the poems she read Saturday are published yet. I recognized a lot of myself in her poems. I was lucky that I had a chance to go and hang out with her and Jamie and Karen and their friend Allegra that evening for an hour.

They were playing with a dream website and we were talking about recurring dreams. I mentioned that my recurring anxiety dreams are always that I am in an airport, train station, or hotel that is like a labyrinth. I can't ever get to my destination because I am stuck, but I end up having such interesting adventures that I end up not caring. And for the first time, it occurred to me that maybe my dreams are trying to tell me that even if I am not at the point in my life that I may think I need to be, even if it feels like I am being waylaid en route to my destination, maybe the journey IS the point. And maybe the fact that it's so interesting along the way makes up for not arriving.

Mary looked at me and said, "I've known you for ten minutes and I knew that's what your dreams meant. This means that you need to stop worrying about not writing. Live your life, take care of your children. This is more interesting."

I mentioned to her that when I first became friends with Jamie (I met him before I met Karen because she teaches in Southern Missouri), I was excited to have a poet to talk shop with. However, we almost never talk shop. She said, "All of my closest friends are poets, and I can assure you, we never talk about the craft of poetry. We share a worldview so we hang out."


I was also thinking yesterday of how fortunate I have been to meet so many interesting people in my life-- many of them right here. It made me feel better about where I live. I was also thinking about Emily Dickinson. She rarely left her house. Yet, what a very vivid life of the mind she had!

Every once in awhile I have to rattle my cage and then I eventually accept again my perimeters. Until I don't.

I did start knitting. I am making another shawl. I have gotten a lot done on it so far-- I love the pattern. It's very easy and repetitive, which suits me. It has enough variation to keep me from getting bored. I am enjoying the process and the soft alpaca yarn, but I am always impatient when I am working for the final project. And then to start another one. I have two more projects in mind after this one, and lovely yarn to use for them.

Here is my shawl so far:

I hope things are going well for you.