Sunday, May 29, 2011

One of many long nights

Soooo hating D right now. :( Poor little Brandan had 3 BG checks in a row in the 300s so I did a site change a day early, at bedtime. I bolused for his bedtime snack and added the correction. A few hours later while he was sleeping it was 429. 4-2-9! WTF? So I corrected it and just hoped I didn't have to do another site change. :/ It started to slowly come down. At almost midnight it was still in the high 200s. I went on to bed and set my alarm for 3am. I woke on my own at 2:13. I went straight to the meter and into Brandan's room without even thinking. His BG was 45. He and his bed were covered in pee from the previously high blood sugar. When I was getting everything together to clean him and his bed, I heard him talking. Very casually and conversationally. I only heard the words "smiley face gummies" clearly. I got into the room and asked Brandan who he was talking to. He looked at me with glassy eyes, pointed to his little brother across the room and answered, "I was talking to Logan." Logan was sound asleep. I told Brandan that. Brandan said he knew that, but he saw Logan move so he wanted to tell him something. I asked what he was talking about. "I told him that my sugar is low and I ate some smiley face gummies. It won't be low anymore. . . . Hey, do I need to get off the bed for you?" I don't know how he was talking, much less how he got up and assisted me with the clean-up.

I just did the fifteen minute follow-up test. He is safe again for a few hours. Now I'm about to check his little brother. I can spare him the horrific finger poke for the fasting BG test in the morning. . . . . . . . .

Before I even got this posted, I heard the little guy cry. His butt hurts because he has some kind of rash on it and he just peed on himself, too. Another clean-up job and then I checked his blood sugar. It was 76. His BG hasn't been high since the first 3 times I checked it, Tuesday morning being the most recent high. Still, it appears my second son has this dreaded disease also.

I'm going to toss Logan's pillow pet in the washing machine now. He was very upset about wetting it. Then I suppose I'll get some rest. If you would dare call it rest.

Friday, May 27, 2011

The D Word

Diabetes. We've all heard that word. Most of us have a clue that there is more than one kind. When my oldest (and at the time ONLY) son was in the PICU and I waited for the confirmation of his diagnosis, I *knew* there was 2 or 3 types of diabetes. I wasn't sure which was worse, I didn't know what their differences are, and until that day, I had never heard of a child having it in any form.

I learned all about type 1 (autoimmune) and type 2. I think it's fair to say that most of the population is aware of those two. Nobody really knows the difference, though, unless they are faced with it. Usually, you have to be faced with type 1 to even bother with learning the differences. Or so it seems to me.

I had heard of "pregnancy diabetes" (gestational diabetes). Much later I learned of a less common form of diabetes, ladent autoimmune diabetes in adults (LADA), sometimes referred to as type 1.5. I wanted to be "in the know" of these so I learned about them all. I have a good grasp on this diabetes thing.

My second son started showing those tell-tell signs of the dreaded D. He went from skipping naps 5 out of 7 days to sleeping 3 to 4 hours in the middle of each day. He went from being potty-trained to having accidents every day and every night. I lost count of how many times I filled up his sippy cup in one day. I decided to check his blood sugar. Two hours after his bedtime snack, while he slept in his Buzz Lightyear bed, his BG was 161. I panicked. An hour later I wiped his hand to make sure it is clean and checked again. 143. The next morning I checked while he was fasting. 104. All of these numbers are too high. Between then and the next 2 days, however, it stayed in the 80s.

I got the news yesterday that his A1C was 5.8 and there was no indication of type 1 diabetes. I was instructed to check his fasting BG once a week for a month and report it to the pediatrician. I am to consult Brandan's endocrinologist at his next appointment, for my second son. At his physical in July he will have a complete work-up done to test his thyroid, antibodies, etc., etc. I was/am relieved that he doesn't have it. Not now, anyway. I still wonder why he has the symptoms, if they are symptoms.

~*~*~*~*~*~ BOMBSHELL ~*~*~*~*~*~

Our wonderful, terrific, pediatrician called me today, from her cell phone, on her day off. She went to the lab to analyze Logan's urine herself. She saw that it was watered down. She thinks he could have a condition known as Diabetes Insipidus. IT IS NOT DIABETES. His pancreas is fine. It has nothing to do with INSULIN or BLOOD SUGAR. It's the kidneys that aren't getting their job done. Fluids are not being processed through the kidneys and into the bloodstream correctly. It would completely explain the drinking and peeing all the time and the fatigue. There are several sub-categories to this disease, which I will get more into when I find out which, if any, my son is afflicted with.

I have been instructed to make sure he has something to drink at all times over this weekend. Next week we will schedule to spend a night in the hospital. He will have a water deprivation test done to confirm the disease (yep, there's that ugly word disease again) and a MRI to determine what has caused it. The most likely cause is an underdeveloped pituitary gland.

So here is my tidbit for the day: The word diabetes is derived from the Greek verb diabainein, which means to stand with legs apart (as in urination) or to go through. Insipidus comes from a Latin word meaning without taste. In contrast to diabetes mellitus (DM), which describes the excretion of sweet urine, diabetes insipidus (DI) describes the passing of tasteless urine because of its relatively low sodium content.

We learn something new everyday, don't we? Oh, what fun it will be to explain these diabeteses (is that a word?).


Within a couple of hours after posting this I got another call from the pediatrician. She consulted Brandan's endo and she (the endo) feels that Logan is in the beginning stages of Type 1 Diabetes. This has not been confirmed either, but it's practically inevitable. Turns out, the 5.8 A1C was not a good thing. It shouldn't be above 5.5

Wednesday, May 18, 2011

Interview with a 4-year-old diabetic.

Me: Do you know what diabetes is?

Him: It's an insulin pump.

Me: And what does your insulin pump do?

Him: It plays Twinkle Twinkle Little Star. (it does, for alerts) It's for when my blood sugar is high or low or just right.
And it keeps going up and it keeps going down.

Me: How does your pump help you with that?

Him: I just take some insulin.

Me: What's the insulin do?

Him: When it (blood sugar) goes high we just have to fix it.

Me: What do we do when your sugar gets low?

Him: Then you just have to give me some gummies or a marshmallow.

Me: Do you know anything else about diabetes, besides your insulin pump?

Him: I remember I had a hulk (infusion site) and it hurt my butt! It was over here (pointed to booty cheek) and I sat on it and it hurt my butt! So then you moved it over here (pointed to opposite booty cheek) and it doesn't hurt now when I sit down.... and sometimes.... I play with my toys and sometimes I do nothing....
I was at Daddy's job and my pump ringed!

Me: Oh yeah? What did it do that for?

Him: And I was running out of battery! It went BZZZ BZZZ and (laser sounds? lol) And I went and got in the truck and my pump ring again! And I went to a track and saw big cars! (Daytona Speedway) And I saw 2 cars! McQueen and The King! (now referring to toy track at store. lol) And my pump ringed AGAIN!

Me: Aww, man!

Him: Yeah! And then when we were in the car it ringed again! And when I got home my pump ringed again!

Me: Did Daddy ever push the button on it when it rang?

Him: Yeah. He did. That's all.

Me: That's all? That's all you know about diabetes, your insulin pump?

Him: Yeah.

Me: Can you tell me what diabetes FEELS like?

Him: Yeah. After, I feel better.

Me: You feel better?

Him: Yeah. After I got sick. My sugar was LOW...........

Me: Anything else?

Him: I don't know... I think that's all about my diabetes.

Me: (something I've been wondering lately) Do you ever not like your diabetes?

Him: Yeah, like when it gets low.

Me: When it gets low you don't like it? (He shakes head) What about when it gets high?

Him: When it's high, I just get some insulin and we fix it and we check on my sugar.

Me: How do you feel right now?

Him: I'm feeeeeliiiing.... just fine.

Me: So you don't think your sugar is high or low right now? (because he looked it)

Him: No. (it was 77)

Me: What about checking your sugar all the time?

Him: I checked my sugar 4 days! And 5 days and 6!

Me: You did?! Does that ever bother you?

Him: No. That's all about diabetes now.

Synopsis: It's all about the insulin pump for him! I never realized that! The only thing that bothers him is lows. How 'bout that? I can't say it surprises me. Can't say it makes me feel any better either. For the record, we all learned a lesson on that day out with Daddy. He will be taking the little emergency kit with them from now on. It has extra batteries. I asked Brandan if it made him mad that his pump kept beeping. He said, "No. It freaked me out!" I wanna laugh while I cry about that one!

Monday, May 16, 2011

Dear Diary,

Things didn't turn out the way I imagined. When I was pregnant with my first son I always, for some reason, had an image play in my head of his first day of school. I envisioned a blonde-haired, blue-eyed boy standing next to me while I introduce him and myself to his kindergarten teacher in front of the classroom. I didn't expect that boy to have the curly-do he has now. I sure hope he still has it when he gets there, though.

Nowhere in my thoughts did I think he would be going to the clinic on his way to his kindergarten class. On his way to and from lunch. Before recess. Before PE. Never, did I think my child would need constant medical care in school or at home. I didn't plan on having "emergency" kits in the diaper bag and purses I carry.

My pregnancy didn't end in a usual way. The result was a baby that came before he was due and put in the NICU. Nobody expects something like that.

I didn't know that the only big milestones he would reach disease-free were to sit up on his own and crawl.

I didn't think about giving him a shot when he ate his babyfood. Or his first real meal. I would have never thought that a glass of milk would be so much trouble.

Doctor appointments were expected, but I didn't count on living from one scheduled appointment to the next.

I thought I could raise a child and do something right for once. I would have never thought that I can't raise him without a medical team.

On a different note, Diary, I didn't know how impressed, challenged, proud, and oh-so-very-loved I would be.

My first son was born with an old soul and it has served him well. He is wise beyond his years. Strong. Eager to make me happy. Fast to learn.

My second son looks like the one in my vision of the first day of school. My second son is the one I thought of when I was pregnant. He is smart too, maybe even beyond his years. He's a good boy, but.. lol... he is the one that every mom "hopes you have some day".

Diary, in my wildest dreams, I never thought I, Trish, little me, would have THREE boys! Up until the minute I heard my third son cry, I wouldn't have believed it. He was my second baby to start life early and in the NICU.

Still, I didn't realize how fragile life is until I saw him die and come back. I said it. He died. But he isn't dead. He is here and he is strong.

I have been in 4 ICUs for 2 children. I just realized what I.C.U. really means. It means, YOUR CHILD'S LIFE IS IN DANGER.

Dear Diary, I love my children just the way they are. All of them. Always. So don't take any of this the wrong way. If I had the choice to start over, I wouldn't.

Saturday, May 7, 2011

Written Proof

My heart pounded, my head spun. I was only filling out paperwork. I was registering my baby for his first year of school. I was answering the medical questions.

Does your child have a life threatening condition? __yes __no
I checked yes

Does your child take medication that could be life threatening? __yes __no
I checked yes

What is you main concern about your child's medical care at school?______ _________________
No room for the essay in my head, so I said, "His blood sugar needs to be checked often. I'm concerned that he will go low and nobody will notice."

I left that whole section blank. Because if there is an emergency and I or my husband can't be reached, the doctor is the only other option. Nobody else knows what to do.

This sucks. That is all.

Monday, May 2, 2011


I have a good D-Mom face. A face that lets everyone, all the time, know that everything is fine even when it's not. Even when it's so far from fine that my insides hurt and my brain is swelling. I lost face tonight.

I changed Brandan's infusion site for his pump when he got out of the tub. The needle entered and exited his skin smoothly and he barely flinched. While I was clipping the tube to the site on his hip he had one simple request, "Don't hurt me anymore, okay?" I stared straight in his eyes and debated what he meant. Right now while attaching it, maybe. Hopefully. Because once-in-a-while he complains about that. "Mama. Stop hurting me, okay?" The screaming inside my head went something like this: SOMEBODY DOOO SOMETHING! MAKE A NOISE! LOGAN! DISTRACT HIM! JONATHAN! COME INSIDE! OH GOD, HE'S STILL LOOKING AT ME! HE'S WAITING FOR ME TO ANSWER! "ooookkkkaaaaayyyyyy, mmmmmaaaaaaammmmmmaaaaaa?" (Slowed down for dramatic effect) Teary-eyed, I told him that I WILL hurt him again because he's gonna need more hulks (the name he donned his infusion sets). I finished with the task of getting his pump ready to deliver the insulin. "Why? Why do you have to keep hurting me with hulks?" I tried to squash all emotion when I said, "Because you need your pump, Brandan." FAIL! His big blues met mine and he said, "But mama, when you hurt me like this it makes you so sad." I sputtered out some nonsense, "It makes me a little sad, but I don't mind because I know that it will only hurt a minute and the insulin will make you better for 3 days before I have to hurt you again."

Okay, let me tell you why that didn't make any sense. First; I lied. Bold-faced. It makes me a lot sad. I mind it every minute of everyday with every breath. I don't know if it will be 3 days before I hurt him again. I could have to wake him up tonight to hurt him. Hell, if the lancet hits him wrong when I check his sugar I will hurt him.

Second; It doesn't "make him better", it keeps him WELL, it keeps him ALIVE. And THIS is what almost came out of my mouth tonight: I HURT YOU SO YOU DON'T DIE!

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?

Thursday, March 31, 2011


I ran the water and added the bubble bath. I helped Logan get undressed and he climbed in the tub. Brandan undressed himself. I unhooked his pump, took the belt containing the pump off his waist, and placed a clip into the infusion site. I left them to play in the sudsy water and get clean. I was feeding the baby and trying not to think of the only thing on my mind. The last time I washed Brandan's hair I saw new bald spots. His second autoimmune disease is attacking again. He has alopecia. The last time, it took all his hair. But I'm not thinking about it.

I hear a musical tune. (Twinkle Twinkle Little Star) I know that the battery in his pump is low.

When the baby finished his bottle I swept the floor. I was stalling because I didn't want to wash his hair. Maybe it would be easier in 10 minutes. Yeah, right.

I washed Logan's hair first. I poured the water on Brandan's hair oh so slowly, but I still saw them. Two bald spots in addition to the big bald space at the bottom of his head that was already there. I stared at my hand, probably a little too long. I was looking for his curls. Finding them stuck to my fingers, I assured myself that it's normal for hair to come out when it's washed. I did the bathing thing and walked out.

I forgot. The pump needs a new battery. I went back to grab it and kept my eyes on the floor. I don't think the boys noticed. I got the AA battery out of Brandan's diabetes drawer and made a mental note that it's the last one. I sat at the kitchen table and replaced the battery. That little lithium device has a big job to do now. It's essentially gonna keep my son alive. I pushed the buttons and performed the whole "new battery" routine on the pump.

I got the boys out of the tub, dried them off and walked to their room with them. I put Logan's diaper and pj's on him while Brandan dressed himself. Then I put the belt on him and hooked the pump back to the site. Moment of truth. I put the comb through his hair. He didn't notice the extra attention I gave it.

I hadn't fixed any dinner. I offered grill cheeses. Brandan said no. The blood sugar reading confirmed what I heard in his voice. It was 285. Of course he didn't feel like eating a grill cheese. I pushed the buttons on the meter to give him enough insulin to bring the sugar down. He wanted crackers so I got the meter back out for more insulin.

They're done eating now. Their hair is dry. It's past their bedtime. And I'm sitting here writing this blog. I'm about to brush their teeth. The cream for Brandan's bald spots is in the bathroom. I used it a few nights ago and Brandan asked me why. I just told him because he needs it. He said he doesn't have boo-boos on his head. I don't want to do this. Yes, I do, because maybe I can save some of his hair.

I don't want to have to do this.

Monday, March 28, 2011


Every mom has to be doctor sometimes. For us with a child who has a chronic illness, it's part of the job description.

My child has Type 1 Diabetes. He woke up this morning with stomach pains. I didn't rush to the ER or even call a doctor. I didn't have to. My house is stocked like a clinic. I did what any doctor or nurse would have done, I tested his urine. I wish I could have gone Mary Poppins with "a spoonful of sugar helps the medicine go down." Instead, I hope this syringe full of insulin will bring the ketones down.

Mommy always makes it better. D-Mommies just have to do it with needles and test strips. Mommies comfort their little ones when they feel sick. D-Mommies do, too, but we have to hurt them to accomplish it. We hurt them physically with the needles. We hurt them emotionally because we have to force them to participate in their recovery. They rest about as well as they would in a hospital. ppfft. We have to pull their hands from under their favorite blanket to check blood sugar at least every hour. We have to keep reminding them to drink. We have to ask them 100 times if they can pee so we can test for ketones. We have to force them to decide what, if anything, they will eat. They can only eat what we offer and if they ask for something else the answer is no. The reward for their effort to keep the food down is another needle. We work hard to hear "I feel better" before a trip to the ER is needed.

Wednesday, March 23, 2011


Fear is my enemy. The fear that while I sleep one of my children might be suffering.

Fear that Brandan's blood sugar has dropped and he won't wake up.

Fear that Devin has stopped breathing and I might not get him to start again.

The fear for my first and third sons are obvious. But I fear for Logan as well. I learned nearly 4 years ago how quickly the world can change, how easily I could wake to find a new reality.

Each night is a battle between my physical need to sleep and my fear of what might manifest while I do.

Each night I go through my checklist of actions before I rest. Did they get their medicines? Their vitamins? Insulin? How many times did they eat? How many times did they pee? (yes, I think of that) Should I stay up for another BG check? Is the heart monitor on?

Did I really notice them all today? (Fear)

Did I forget anything? (Fear)

What if somebody is getting sick? (Fear)

Maybe I shouldn't have let him do that. Or should have let him do this. (Fear)

Every action I make has a direct reaction. A consequence. (Fear)

I sleep with one eye and one ear open. I sleep with fear.

Fear does not let me rest. Especially while I sleep.

Saturday, March 19, 2011

Brandan's Angel

Do I believe in angels? Yes and No. I don't know if there are Heaven sent, celestial beings here on Earth. What I do know is that Brandan has an angel.

When I get the urge to check his blood sugar for no obvious reason and find it to be low or high; that's Brandan's Angel.

When I wake during the night and get the feeling that I should get up for an unscheduled check and find him sweating in his bed and/or unable to wake easily; that's Brandan's Angel.

There are times that Brandan's Angel wakes me to find a not-so-high or not-so-low number. The angel gets me there in time to stop a bad situation from getting worse. Sometimes everything stays okay. I don't get mad at the angel. Better safe than sorry.

I've been listening to Brandan's Angel for years now. I never ignore it.

I've only recently learned to trust it when it tells me he's alright.

I was trying to stay up one recent night to check his blood sugar at midnight. I fell asleep and woke up at 11:30. I was so tired that I asked to Brandan's Angel if I needed to get up. The angel told me he would be safe for this night. And he was.

I don't hear Brandan's Angel. I feel it. I feel it everytime Brandan needs me. Now, I'm learning to feel it when he doesn't. Brandan's Angel is unseen, unheard, always here.

Monday, March 14, 2011

Why didn't I think of that?!

Lastnight I was discussing the possibility of my newborn having brain damage because he was in cardiac arrest for over 6 minutes. I know the person meant well when she said, "pray that it will go away if there is".

My train of thought is raging because I've been told the same thing about Brandan's diabetes. "Pray that it will go away." Why didn't I think of that?

I read an article that said Vitamin D will control blood sugars and ultimately "cure" diabetes and the best way is to spend lots of time in the sun. Why didn't I think of that?

Some people like to point out that "that cookie will make his blood sugar go up." Why didn't I think of that?!

Some people like to advise me that he might go blind.; he might die young; he's going to have a hard life IF I don't control his blood sugars and IF I don't teach him good eating habits and IF I don't take him to the doctors. IF I DON'T FAIL, HE'LL BE OKAY! WHY DIDN'T I THINK OF THAT?!

Saturday, March 12, 2011


Brandan had a BG reading of over 300 twice in 2 hours, at bedtime. So I put the little plastic cup and bottle of ketone sticks on the bathroom sink just in case he woke up and went to the bathroom, but he didn't. The next morning his BG was in the 80s, so I wasn't worried about checking for ketones. I was very sick and paying bills online when Brandan called out from the bathroom, "Mom, I peed in the cup!" Ok, that's fine, but I didn't get up to test it. "No more ketones!" he called out. OK, whatever. (He always says that when he pees in the cup.) All of a sudden, he was behind me asking, "Do I throw this away in the kitchen?" I turned around to see him holding a ketone stick with a dark pink tip!!!!! Moderate to large ketones!!!!!! YIKES!!!!!!! He never did that before. He actually opened the bottle, did the test and closed the bottle! I wasn't going to check! I was ashamed of myself and bittersweetly proud of him. Now he won't let me do it, he insists on doing it himself. Oh, so much responsibilty for a 4-year-old.

Good news!

Brandan saw his endo today for his annual face-to-face consult with her. (We usually see her thru satelite TV). This is also the time of year when he gets his full blood work up done, so I've been a little nervous. Here's the good stuff (drum roll please)..... His A1C is 7.4, down from 8.3 three months ago! His cholesterol is good, his thyroid is functioning properly and there are no signs of new complications! There was only one basal rate change. Add to that his new headful of hair and it seems we have things under good control! (Knock on wood.)

4 years, 1 month and 28 days

This was Brandan's exact age we he asked me the question I always knew would come. "Why do I have diabetes?" This is one of life's questions that there is no good answer for. I think about it all the time and hoped that by the time I was asked I would have an answer for him. I thought, I hoped, I would have more time. So when he threw me off guard with this question 2 days ago, the only answer that came to my mind was, "It's just something that happened to you." He asked, "Did it happen because my Hulk (his infusion set) came off?" It's strange that he thought of that because he's had T1 for over 3 years and just got his pump a few months ago. Oh, the thought pattern of an innocent 4 year old. I of course explained to him that his Hulk is there to give him insulin so his diabetes won't make his sugar get high, etc, etc. He accepted this answer, for now. I suppose when he's a little older and asks me that question I will get into the technical details of how he got diabetes. The why will never truly be explained or understood.

He knows Mama has a baby in her belly and he is fascinated that he used to be in there. :) He went through the whole story he learned; "I was in your belly, I grew bigger and bigger until it was time for me to come out, then I came out of your belly and the doctor caught me." But this time he added, "And I had diabetes." He was absolutely shocked when I told him he didn't have diabetes when he was born. He asked me when he got it so I told him, "When you were one year old." He thought on that for a minute. He had a look that no child should be able to put on their face. My heart broke. He didn't say anything else about it. He said he wanted to watch his movie and he turned toward his TV. I don't think he really watched his movie. I could see that he had thoughts going through his mind. I asked him if he was ok, he said yeah. I asked him if he wanted to talk about his diabetes anymore, he said no. I asked him if he wanted to talk about anything, he shook his head. He never turned away from the TV, but the look stayed on his face. I gave him a hug and told him I love him. It felt like longer than it probably was and he finally snapped out of it and got his attention on something else.

My thoughts are a bit scattered in this post, but it's been a while. He wants to know and understand and I want to help him. I know the questions will get more difficult. He always just accepts it though. He accepts every answer, everything he has, everything he has to do, everything he has to live with. He just accepts it.

Cuteness inspired by the pump. :)

Brandan has a blue Animas Ping he calls his Spider-Man pump and green infusion sets he calls his Hulk. Suddenly, everything he gets has to be blue or green, or both to match. From his Medic Alert bracelet, shoes and accessories, to toys. He has 2 pump packs right now and he's anxiously awaiting the arrival of the Buzz Lightyear pack "he" ordered. He has collected a few coins that he carries inside of one of his packs. We used the EZmanager software to download the tune "Twinkle Twinkle Little Star" to his pump for alerts and warnings.

We went to Wal-Mart with my mom the other day. This Wal-Mart has a McDonald's in it. Even though it was only 10:30 in the morning, Brandan insisted that he was "hungry for lunch" and asked my mom to get him a Happy Meal. My mom jokingly asked him if he had any money. His face lit up, "Yeah!" But then he looked disappointed when he lifted up his shirt. He said, "It's the wrong pack, I don't have any money. Can I have yours money?!"

When he saw his pediatrician he impressed her with his knowledge of the pump. She didn't even ask, but he explained to her how it works. "My Spider-Man pump has insulin in it and the insulin goes through the tube and into my Hulk and in my belly and it gives me insulin ALL THE TIME and mama pushes a bolus when I eat." Amazing. So, when we saw his endo I bragged that he knows all about his pump and she asked him what it does. He told her, "It plays Twinkle Twinkle Little Star!"

He's gotten to the point where when I call him "baby" he gets defensive because he's a "big boy" now. I slipped up one day and called him baby. I got a lecture! "I not a baby, I a big boy, I big and tall and I have a insulin pump!"

Awww, my boys.

The other day Brandan (4) and Logan (22 months) were sitting on the sofa watching TV. I approached with Brandan's insulin syringe in my hand and he pleaded, "No, not again." It was the usual conversation of telling him that I have to and I asked for his arm. He told me no. His little brother looked very sympathetic and held out his arm and said, "I'll do it, Mama." As if that isn't heartwarming enough, Brandan shook his head, pushed Logan's arm down and offerred his arm in it's place.

I can't put into words how I feel about their relationship. What more could a mother ask for between siblings? I hope they never change. I think they never will.


Brandan (almost 4 years old) and his brother, Logan (22 months old) were playing together in the bedroom while I was at the computer and Dad was playing a video game. Brandan didn't want anything at snack time and his sugar was in the low 100s when I checked. I yelled to him, "Brandan!" "What?" "How's your sugar feeling?" "Fine." Some minutes passed, not too many, and little Logan was standing in the hall screaming in a high pitch at his brother, "Come on Dan-Dan NOW! Come here! Come here!" He waits a second. "Dan-Dan!" He's really worked up now, face turning red. Finally Brandan comes out of the bedroom and Logan goes to the drawer with Brandan's meter and supplies in it. I usually don't allow Logan to open that drawer, but I was stunned to say the least. I thought he was yelling at his brother to come play. So, Logan brought the meter to me, "Here Mama," and stood there watching as I checked Brandan's sugar. 69. My jaw dropped and Logan just stood there with some look on his face I don't think I'd ever seen before. I asked Brandan if he knew his sugar was low and he shrugged. I asked Logan if he knew Brandan's sugar was low. He still had that stranger's look in his eyes, but he smiled just a little. His dad and I praised him, of course. With tears in my eyes I said to my husband, "Brandan's gonna be alright out there. His brother has his back already."

A Picture's Worth A Thousand Words

I took a picture of Brandan's supplies; meter, insulin, syringe, everything we use every time he eats. I did this for a little photo project I'm working on. Brandan wanted to see the picture in my camera, so I showed him. His reaction was, "That's me!" He's not in the photo. It's just stuff. Diabetes is more than just something he has, it's part of him. I already knew that. Maybe I already knew that he knows that. I don't know why those 2 little words, 'that's me' felt like a punch in the stomach.

My Epiphany!

"Not again! Not again! I'm done!" That's the plea Brandan gave me when I was trying to give him his Humalog. Suddenly I fugured it out. He only gets upset about it when his sugar is high, in this case it was over 300. He doesn't seem to mind having diabetes, he's usually OK with getting insulin, checking his sugar is just a thing to him. So these fights we have, it's just a 3 year old being ill because he doesn't feel good. Even though I know he doesn't feel good because he has diabetes, this realization has strangely made me feel better. Seriously, when he's in that mood he'll fight about anything. So I shouldn't feel any worse because he happens to be fighting about insulin. I think a little weight has just lifted off my shoulders

A Battle In The War Of Diabetes

Yesterday my 2 boys, Brandan (3, who has diabetes) and Logan (18 months, who does not), were eating one of their favorite snacks, yogurt raisins. Logan started throwing his raisins across the floor, as he often does and I'm trying to get him out of the habit. For the first time ever Brandan started throwing his too. And the dog was eating them as soon as they hit the floor. So, yeah, I had no idea how many of Brandan's carbs the dog just consumed. I warned them to stop or I was taking their snacks away, I told Brandan that he knows better than that. Several minutes later I saw them sitting in front of the dog putting the raisins in front her and because that didn't make noise I have no idea how long they had done it or how much they fed her.

I didn't give Brandan insulin because I thought he probably gave MOST of the raisins to the dog. I actually thought to myself that if his sugar gets high I might be able to teach him a lesson. So I waited 2 hours and checked his sugar for dinner. 461. What kind of horrible mother am I?! I instantly regretted my previous thought of teaching him a lesson and I feel so guilty!

Brandan saw me preparing his insulin before dinner (I usually wait 'til after he eats) and screamed, "I don't need insulin!" I told him he does because his sugar is real high. (It was my fault.) "No, no, no!" He screamed. "I don't need insulin! I don't want it!" He continued to fight and struggle with me while I was being as nice and comforting as I could be. I know he was only fighting me because his BG was so high. (It was my fault.) I finally got him in my lap ready to inject the insulin and he said to me, "I don't like to need insulin." Such an innocent voice to say something like that.

I gave him the insulin and cradled him in my arms while I sang "the song" to him. When he said he felt better I told him why his sugar was high. He understood and agreed to never throw his food or feed it to the dog again.

"Bad Sugar"

A couple of nights ago my husband and I were watching a movie. My 3 year old son, Brandan, who has diabetes woke up crying "that" cry. I grabbed his meter on the way to his bedroom. When I opened the door he was curled up in the fetal position and said, "Bad sugar." He has never said that before. When I sat on his bed to check his sugar he sat up. His cheeks were flushed, his eyes were wide and wandering and his hand trembled when he held it out to me. He pointed toward the living room and said he wants to go sit with Maw-Maw. I told him she's not here, it's night-night time. He must have heard a woman on TV, he was confused. A panic washed over me as I pricked his finger and waited for the low number. The meter read 429. He looked at me and said, "I want to go home." "We are home, baby." "I don't like doctor," he said. Did he think he was at the hospital? Did he think he needs the doctor? I was scared and I had to focus. I knew I needed to check for ketones. I asked him if he had to potty, and of course he did. He stood and peed right there beside his bed. My poor baby didn't know where he was or what he was doing and now I couldn't test for ketones. As I carried Brandan to the living room I thought about taking him to the ER. I gave him insulin instead. I didn't know if it was enough or too much, I just wanted him to get better. He curled up in my arms, asked for his Care Bears cover, and closed his eyes. I tried to stop my tears, but I failed and he didn't notice. About 5 minutes later he asked where his daddy was. Daddy came to him and gave him a kiss and a few comforting words. Another 5 or so minutes passed and Brandan asked for a cup of water. After taking a few sips he said, "Night-night Mama. I love you." Some of the weight lifted off my shoulders in that instant. I checked his sugar 3 more times during the night to make sure he didn't go low. He woke up the next morning a little high, but with no ketones, and seemed to feel fine.