"JUST" A BATH BEFORE DINNER

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.

DR. MOM

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.

SLEEPING WITH THE ENEMY

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.

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.

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?!

Whoa!

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.

AMAZING

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.