The other day I received a large box from Insulet Corporation in Bedford, Masschusetts. It was Taylar's starter kit for the OmniPod insulin pump! At first I kind of just stared at the box but then dove right in. Starting the pump is going to free us of giving her shots 3+ times every day. It's only going to be one stick every other day. The pump will be attached to her body 24/7 and will give spurts of insulin all through the day and night, much like a normal functioning pancreas does. It will help with her blood sugar numbers and will free us up from our very tight eating time table. Once she starts the pump she will eat to her appetite, not by the clock or carb count. I see a little bit of freedom at the end of this tunnel!
The other day Taylar came home with a list of sentence that she had written at school which incorporated her spelling words for the week. I noticed right away that the handwriting was very well done which I was proud of and then that word "diabetes" stuck out like a sore thumb to me. One of her spelling words was "happy". The sentence she wrote was, "There will be a cure for diabetes. I am so happy!" I bet no one else wrote that sentence. It's times like this that I hate diabetes. I just want it to go away! It is something that invades my thoughts on a minute by minute basis every single day. It is something that I have to consider when making most of my daily family decisions. Although Taylar doesn't complain or talk much about her diabetes in a negative way except for the occasional, "I really don't want to do this", it is sadly always there and always on her mind. I wish I could take it away. It comes out of her in certain ways at random times, like this spelling word sentence. I was happy to see that her teacher drew a little smiley face next to it though. :)
Another example happened last night. It was raining pretty hard and she is the only one with a bedroom upstairs. She sometimes gets woken up from the rain pouring down on the roof which is what happened last night. She came into my room around 3am scared saying she couldn't sleep. I walked her back up after trying to convince her that it's just rain and she'd be fine. She asked me to pray, so I did while sitting on the edge of her bed. In my sleepiness I prayed that the rain would stop soon and that both of us would be able to fall back to sleep until the sun came out. I then asked her if she wanted to pray too and she did. This is what she said, "Dear God, thank you for this night and that I have a Mom, a Dad, and a sister to take care of me and all my diabetes stuff...." I don't know if she said something more after that. I think she did. I totally didn't hear her though because I was trying to figure out what was going on. I thought she was afraid of hearing the rain and couldn't sleep? What did her diabetes have to do with it?
No she doesn't complain about this new way of life but it never leaves her and it's obviously always on her mind. I was so sad when I went back to bed wishing I could take it all away. There are times too when she'll randomly mention some fact about Nick Jonas from the Jonas Brothers, who happens to have type 1 like her. Or the time she told me a boy had school bought and ate not one, but two ice creams at lunch. She was horrified that he would eat that much sugar. I was too, but that's besides the point!
So I don't know what the root of the problem was last night. We are hopefully transitioning to a pump soon instead of injections and a part of those many appointments is meeting with a social worker to discuss the changes that pumping will bring to our lives. I may let our social worker in on a little bit of my concern of Taylar possibly keeping things bottled up inside of her. Maybe she can ask Taylar the right questions in the right way and she'll express some of her true feelings about having diabetes...without me in the room. I think it may be a good outlet for her. Maybe I'll make myself an appointment while I'm at it. Seriously.
Number check: We've only seen the 200s once this past week. I'm so happy about that!
If there is one word used to describe diabetes, it's unpredictable. We had to make lots of changes recently to Taylar's insulin doses because her numbers have been all over the place. Luckily this week has been so much better! Today, in fact, we have kept her out of the 200s completely! It definitely makes her feel better and that, in turn, makes me pleased.
It rained for 2 solid days. It was finally sunny out and gorgeous today. After doing homework we were able to go for a bike ride. That was nice.
During our two night stay at the hospital we learned so much about type 1 diabetes. It was extremely overwhelming. At night when she was sleeping I would cry. The quiet of the night (well, as quiet as it could be in a hospital) would just make everything come to the forefront of my mind. I did not want her to see me upset and was so strong during the day. At night I would crumble.
Having a diagnosis of type 1 diabetes means that four times a day Taylar has to do finger pricks to obtain a number relating to the amount of sugar/glucose in her blood. (I may use the words sugar or glucose interchangeably) Her normal range is between 70-180. (Remember she was 550 at the doctor's office?) Depending on what the number and what she is going to eat she gets a certain amount of insulin injected under her skin with a syringe or insulin pen. Four shots a day. NO person should have to live like that. I have to mention here that I have a very strong dislike for needles and have actually fainted twice from shots I received! Can you imagine how I felt learning to give a needle to my own daughter?? It was horrible.
The carbohydrate counting was a learning curve too and still is. She is allowed a certain amount of carbohydrates for her three meals and three snacks per day. We have discovered, however, that not all carbs are created equally. It makes it hard with meal planning, that's for sure. If she has a picky night and doesn't want to eat some of the dinner I made but she already had her insulin shot, there is a chance she may have a reaction to having too much insulin and not enough food, a low blood sugar. She calls it a "low". Fortunately, she has become aware of how she feels when she is low so we can treat it right away by giving her juice, skittles, or glucose tabs.
So seven months in and things don't exactly seem "normal" yet but as I' ve read in a few books it could take up to a year for things to seem "normal". I know inside things will never be the same again however.
It was that time of year when I go away for a mountain biking weekend in Waterville Valley with my sister. Our "sister weekend" as it has been named, is one of my favorite things to do every year. On Sunday, August 2, 2009, I came home from an awesome weekend of sleeping late, eating good food, and just being with my sister.
While I was away my husband took our two girls to his parents' place on a lake in Maine. There was a pancake breakfast, trip to the candy store, and a birthday party all in that one weekend up there. Sunday night our 7 year old, Taylar, continued to come downstairs at night to use the bathroom. She had started doing this during the two weeks prior, but not as bad as this evening. She was constantly asking for a drink of water and in turn, constantly going to the bathroom. Because her bedroom is upstairs and the bathroom is down, we would hear her every footstep and she would leave the light on. It got very annoying.
The next day I mentioned this situation to my Mom out of frustration of having my precious sleep disturbed. With much hesitation, because that's how Mom is, (she would never want to "butt in". BUT I would never think of it that way anyway! My Mom is the best and would listen and take her advice any day of the year.) my Mom asked me if I thought Taylar's situation had anything to do with the fact that my husband's grandmother has diabetes. She thought some of the symptoms sound like what Taylar is experiencing.
I had no clue. I never thought of that. I just thought the girl was driving me crazy! On Tuesday, August 4, 2009 I made a doctor's appointment for Taylar because the constant drinking and urinating continued. I made them aware of the symptoms and they wanted to see her right away. They took a blood sample by doing a finger prick and her blood sugar level was off the charts...somewhere around 550. Thank God my Mom said something to me.
The doctor looked at me and said, "What you suspected is correct. Your daughter has diabetes." I froze. I completely froze. I didn't have anything to say and I certainly didn't know what to do. How are you supposed to react when someone tells you that your baby has a chronic disease?
Before I knew it the doctor was on the phone informing Children's Hospital Boston that we would be arriving within the next two hours. "You can make it there within two hours, right? Expect to stay for a couple of nights." My world was slowly being turned upside down and my heart literally ached.
I called my Mom on the way home from the doctor and told her the news. She instantly teared up as I could hear in her voice and just kept saying, "Oh no! Oh no." over and over again. I didn't cry. I was still frozen and just going through the motions.
After an immediate call to my husband at work, and as soon as he arrived home and I was able to grab the bare necessities for a hospital stay, we left for the hospital and were admitted through the emergency room. Our younger daughter stayed with my parents through all of this. The rest of the story is a whirlwind.
My life has changed so dramatically in the past seven months since my 7-year old daughter was diagnosed with type 1 diabetes. Although there is a lot of family support and I am slowly meeting people in a similar situation, I'd like to have somewhere to go and vent my feelings of having diabetes be such a huge part of my life. I'm thinking this blog may help.
I'm realizing on my facebook account that I often update my status to include my diabetic story of the day. In order to lessen the frequency of that and to give people a break from hearing it, I am looking forward to coming here.
I can't help but be an advocate of type 1 diabetes and finding a cure for the millions of people this disease touches on a daily basis.