Friday, April 22, 2011

Something I've been thinking- that's all.

I love the DOC. I don't know how I lived without them for the first 2+ years of diagnosis. They are always there to answer my dumb questions and make me feel not-dumb about asking. They have a way of saying exactly what I need to hear exactly when I need to hear it. They give me advice when I need it without it sounding critical, sometimes when I don't even ask for it. lol. I have a confession.

Lately I've noticed how different it is for me. For us. For Brandan and I. I did not say BETTER. I said DIFFERENT.

Many well-intentioned folk like to tell me that it's easier for Brandan because he was diagnosed so young. It's supposedly easier because "he doesn't know any different." I myself have used that line, "he doesn't know any different", but that does not make it EASIER for him. And truth-be-told, he does know different. He knows that nobody else checks their sugar before they eat. He knows that nobody else puts all their food on a scale. He knows that nobody else wears an insulin pump. He knows that nobody else gets up in the middle of the night to eat to save their life. He's 4 so when I say "nobody", it means people he knows, k? ;-)

Oh, I strayed from my point a little. My confession. It looks like it might be just a little easier for ME in comparison to other D-Moms. I read blogs and FB posts that break my heart everyday. D-Moms get scared when they watch their D-child run and play outside. They fear their sugar will go low and she will miss it. They feel sorry for their D-child because of the burden they carry and I don't blame them, not one bit. They stress over the first of each holiday with their D-child. They worry about the candy, the parties, the new foods, the activity. They wonder what they should do with insulin doses, they wish they could leave the child alone for just one day and let them be a kid. And I don't blame them, not one bit.

It's different for me. It's different because I never knew what it was like to watch him play outside without D. He never ate candy, or big dinners, or ran around at parties without D. I was a mom for 12 months. I've been a D-Mom for almost 4 years. So maybe it's easier because it's all I know.

Monday, April 18, 2011

It's Okay.

It's not unusual for children to ask Brandan about the pump pack he wears. They always want to know what's inside it. I have witnessed many entertaining exchanges of words while he tries to explain.

He named his insulin pump Spider-Man. Because it's blue like Spider-Man. Because at the tender age of 3, when it was time to pick a color for his new method of insulin delivery, he associated all colors with superheros.

Imagine, if you will, a four-year-old showing another four-year-old a medical device and calling it his Spider-Man. They called each other silly a few times until I stepped in with some child friendly technical lingo.

Yesterday, I watched from afar as a little girl at the playground asked him what's inside the pocket on his belly. I heard him tell her it's a pump. I heard her ask to see it. But the big reveal must have taken place behind the slides. I missed it.

When I saw the tube twisted around the belt and sticking out of the pack it made me smile. I left it alone until he got undressed for his bath. I commented about his crazy tube (a term we use often). He told me he showed his pump to his friend at the playground. I replied by telling him that most kids don't know what insulin pumps are. He said, so matter-of-factly, so wise beyond his age, "I know."

My insides scrambled with those two little words because of how he said them. He knows what other kids don't. He knows because he has to. He knows and it's not a big deal. He knows that it's different for him and it's OK. He knows. It's no big deal. He's OK. Just like that, I see how he sees it. Just like that, I see that he understands. And just like that, I'm actually OK, too.

Thursday, April 14, 2011

He asked me, so I told him.

I've had an ache in my chest all day. I keep crying about Brandan's hair. To hide it, I've been keeping busy. He caught me staring at him though. Twice. Oops. He asked me, "WHAT?" both times. A shake of the head is all he got from me as I busied myself again.

Here I was, on my Blogger dashboard (home page), and nosey little I-have-to-know-everything-Brandan comes to sit in my lap and play 20 questions. So I showed him my blog and told him it's all about him. I am aware that I have a picture of him bald on here. (2 posts down) But I have that same picture on the wall in my house. Brandan sees it everyday. He asked me to make it bigger. He always does that with pictures on the computer. But right on cue for the day, he asked (drumroll please!)........ "What happened to my hair?" I scrolled the picture down and he was distracted by the image of the teddy bear and his bare feet long enough for me to make a snap decision to go ahead and have THE TALK with him.

I told him the truth. His hair fell out. What was I supposed to say? How do you sugar-coat that, ya know? I involuntarily started rubbing his hair back when I talked about it. I put my finger on the bald spots while I explained to him why I've been putting cream on them. My silly Brandan. Of course. He pulled his bangs straight in front of his face and said, "My hair might come out? Good. Then it won't go crazy and tickle my face." I asked him, "So, you don't want your hair?" (It's okay, I forfeited my mother-of-the-year nom a long time ago.) He's too little to talk like this; "I don't know", he said. "We'll see." Then he wanted to know why the hair in the picture is black. I explained to him about how we shaved those little spots and we might have to do it again. He just shrugged his shoulders. That's all!

I'm leaving small parts of the convo out to keep them between me and him. But, yeah. He knows and he doesn't seem to care. I had a feeling that my superhero would end up saying somethng to make me feel a little better.

Monday, April 11, 2011

Seriously. (only not so serious)

The other day my hubby was munching on some pork rinds. For those of you who don't look at such things, pork rinds have no carbs. (Or maybe just a miniscule amount for the flavoring.) Anyway..... Brandan asked his dad if he can have some so he pointed the open end of the bag toward Brandan and said, "Go ahead and eat some." Brandan responded, in shock, "Are you SERIOUS?!" That made my chest hurt a little. The littlest thing that we, without diabetes, think nothing of is huge for the children with it. See, they never get to just eat out of the bag. We have to weigh and measure everything for them first, so it ends up in a bowl.

But I'm looking at this differently today. I'm looking from Brandan's perspective. He got to eat out of the bag! It's not sad. It's cool! He got to sit on the couch and eat out of DADDY'S bag of junk of all things! It's like when we adults cheat on a diet. Actually, that's exactly IT. Brandan got to cheat on his diet. It felt so wrong and it felt so good!

Yes, I'm looking at the brighter side today. For Brandan, diabetes isn't a big deal. But a few minutes to forget about it, that's HUGE!

Sunday, April 10, 2011

Superficially Aware -or- Admitting My Superficiality

Brandan has some new bald spots. His autoimmune disease, alopecia, has attacked once more. The first and only time this happened was 2 years ago. He lost almost every hair on his head, including his eyebrows and eyelashes. It took over a year for it to start growing back. There are no health concerns with this disease. It is only hair loss. "Only."

I've just noticed that when I look at the back of his head, my face falls. I look at him with pity. I feel sadness. It is just hair and, I dare say, it hurts me as bad as diabetes.

Brandan has OCD (Obsessive Compulsive Disorder). One of his quirks was that he wouldn't let anything on his head. No hats. No masks. No sunglasses. Not even headphones. Nothing at all could be on his head. When his head was bare and it was cold outside I had to make him wear knit hats. I enforced it by telling him he can't, he is not allowed, to go outside without it. He was 3 and he loved to play outside so of course he did it. Just like he takes the needles because he has to.

When summer came I encouraged ball caps. Sometimes he would wear them and sometimes not. I felt better, relieved even, when he wore them. I just realized, looking back, that I saw him differently. But I treated him the same. At least, I think so. I meant to. Did I?

It didn't bother Brandan. It didn't matter to other children. But I can't stand it. I don't hide his diabetes at all. I always do what needs to be done when it needs to be done, regardless of where we are or the surroundings. But. For some reason. That bald head made me feel like it was advertising that my son has a medical condition. Which he does and I don't mind talking about it. So why does it bother me? It just does. I have no better answer than that.

I didn't like it when people asked me what's wrong with him. It happened A LOT. Adults would blurt it out in front of him. "What's wrong with him?" My answer was always, "Nothing is WRONG with him, but he has....(explanation of diseases." To prevent the freak out of making a person think their, their mom's, their dad's, yadda yadda's diabetes would make their hair fall out, I had a prepared speech I gave each time.

"Does he have cancer?" was also very popular. Then I had many good natured souls come up to me out of the blue and tell me how beautiful my boy is. Which he is, was, and always will be, but I know what they meant.

Hypocritically, I got mad when somebody looked at him with sorrow. Once in a while Brandan would hear me say something along the lines of "his hair fell out." I had to watch that because it caused a sadness in his eyes. A few times I had to run away and cry because he noticed and mentioned not having hair.

He thinks it was a haircut. I didn't know that until it grew back. We used to shave off the few little patches he had left. So when it grew back long and I suggested a haircut, he said to me, "But I like my hairs. I don't want them cut away." He like his hairs. HE LIKES HIS HAIRS!!!!!!!!!!!!!!!! It's going to hurt him this time. Every morning and every night I put the cream on his bald spots to grow the hair back. He asks me why and all I say is, "Because you need it." No sense in worrying him about it.

Saturday, April 9, 2011

What have I done?

Maybe not much. Maybe something irreversible. Definitely something I'm ashamed of.

Back in December Brandan got sick. Even though it took him a couple of weeks to get over it, I never took him to the doctor for it. I kept the ketones away and the one time he got a fever I treated it. His sugar stayed high as it always does when he's sick, but other than the cough and runny nose, he didn't seem too sick. I mean, he still ate and played and everything.

He was well by Christmas, but his sugar stayed high. There was no sense in trying insulin changes with the screwy activity and such, so I would wait until after it all settled.

I don't know what kept me from simply downloading his pump and meter to email his nurses in the next couple of weeks, but I didn't. Then, January 14, I was in the hospital. I gave birth to my premature baby. I was out of town without the Animas software for 3 weeks. I could have still called his endo office, but I didn't. Oh no, couldn't take the time.

AT THE END OF FEBRUARY I found the time to contact his nurses. And then....... I'm back at the hospital with the baby. This time I was at least nice enough to check my email and make the insulin adjustments his nurse gave me.

Everyday I saw numbers in the 200s. 300s. Some 400s. And everyday I told myself that I need to download and email his log again. First, I decided to try and handle it myself. I increased all basals. Better, but I still saw numbers in the 200s all day.

I finally emailed the nurses this week. I looked at these numbers. I thought of how long they've been this way. I am sick about it. I wonder, what have I done? Has this continuous stream of blood sugar caused some damage to the little body it courses through? All because I got lazy for a few months, he might pay the price forever. Best case scenario, I just let my boy suffer for months. "Best" is being used very loosely here.

His hair is falling out again. Hair follicles are on a 3 month cycle. Which means that something happened in December to kill them in March. Which means that when he was sick the white blood cells attacked the good stuff when they were attacking the bad stuff to make him better. That's what autoimmune is. They might not have stopped with the hair follicles this time. If I had taken him to the doctor for antibiotics, maybe this wouldn't have happened.

What have I done?