Thursday, March 31, 2011
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
Wednesday, March 23, 2011
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
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
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
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.
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!"
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.
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.