Time Flies....

Maddie drew this when she was 5 years old, on the day she was diagnosed, while we were getting our first 12 hour crash course in diabetes. It's still hanging in the endocrinologist's office 7 years later.

Reply

I just wanted to write a quick post to reply to a comment that someone made on one of my older posts.  I don't know the commentor, but I am very glad that she found my blog and read it.  That really means a lot to me.  The more we know about the stuggles people have with diabetes, the closer we'll be to finding a cure.

I think she misunderstood the title of my blog, which is "A Beautiful Diabetic".  She wrote:   

"It is sad that you identify your daughter as diabetic.
It should be....My Beautiful daughter is Maddie. She is 9 and she's smart, talented, full of life, and hilarious, all rolled up into one precious little body. o yeah she is diabetic.
Diabetic is not who she is."

You're right--a diabetic is not who she is.  And just so you know, I don't really 'identify' her as diabetic.  The reason I called my blog "A Beautiful Diabetic" is because I want people to know about this disease, and how it affects children and families on a realistic daily basis.

I could have called it ":My Beautiful Maddie" and that would have been a wonderful title, but for me, I want to reach out to that one mother, who sits in despair at her computer, googling diabetes because her child was just diagnosed.  I want her to know that my diabetic child lives a normal, fun-filled, yet sometimes treacherous life.  This disease is a fight that we are going to win, and that is the point of my blog.

Another reason for writing my blog, mostly about diabetes, is because there is a huge community out there of families with children who have the disease.  Personally, I value those other moms who have that in common with me, and who also have blogs about their diabetic kids.  I look to them for support, and questions when necessary.

But, thank you, friend, for caring enough to leave a comment on my blog.  I sincerely appreciate your input.  But don't be sad~  I don't identify Maddie as a diabetic.  It's just a creative title that is intended to catch the eye of someone who is struggling with the same thing. 

Being a Mom

My initial intention was to write a blog for moms whose kids had been recently diagnosed with diabetes.  My thought was to let them know that even thought it's devastating to find out that your child has a chronic disease, it's probably the best one to have.  You see, it's not cancer (thank goodness) or a tumor or a disability that will make her look very different.  Diabetes is something that can be easily hidden, easily regulated, and pretty easily monitored.

I also wanted those "newly diagnosed" moms to read about a normal family with normal kids, who live a normal life, but that live it with diabetes.  See, I don't claim to know much about politics, or the financial world, or business, or even sports.  I don't watch the evening news, or really care about watching it.  I don't have a medical degree, or ever thought about getting one.  My talents lie only in being creative.  I don't claim to know much about the cardiovascular system, or the nervous system, or the endocrine system, or any other systems.

But, I can tell you that I know almost all there is to know about taking care of a child that has diabetes.  I know what to do if her blood sugar gets too low.  I know what to do if it gets too high.  I know how to give shots.  I know how to change an infusion set.  I know what to feed, and what not to feed a diabetic.  I know how big "one serving" of pasta is.  I know how many carbs are in a half cup of white rice.  I know what's going to happen if she's too active.  I know what to do if she's been sitting still for a long time.  I know what to do if she gets upset.  I know what to do when her adrenaline kicks in.  I know what to do when she's sick.  I know what to do if she has ketones in her urine.  You give me a diabetes scenario, and I can tell you what to do with it.  

My sister always says that I know way more than she does about diabetes, even though she's had it for over 13 years.  I think I know why.  It's not me that has the disease.  It's my child.  I didn't set out to learn about diabetes.  I did it because I had to.  It's my responsibility to take care of Maddie, so I have to know all of that stuff.  If I were the one with this disease, I probably wouldn't know as much about it. 

As moms, we don't let our kids out of our sight, unless we know that they're going to be safe.  That's our job.  It's why we're moms.  I went to college at a huge university for 4 years and got a Bachelor of Arts degree.  No employer or cushy job in the world is as sweet as being a mom.  I'm going to give it my all.  And that includes taking care of a child with diabetes.

10 Things I Want My Friends To Know

Here's another good one from www.juvenation.org:

10 Things I Want My Friends To Know

1. When I'm testing my blood sugar or giving myself insulin, please don't get grossed out or make a big deal about it.
2. Please stop telling me I can't eat something because there's sugar in it!  I can eat all the same things as you can, just in smaller portions and with a dose of insulin.
3. Just because I've had diabetes for a long time doesn't mean I'll ever get used to it.  Most days I'm fine, but some days my diabetes can still get the best of me.
4. I'm not going to die every time I check my blood sugar or experience a low.
5. You don't need to announce to everyone that I have diabetes.  I'll tell them if I want to.
6. Having diabetes is like a full-time job and can be exhausting, so please be patient with me.
7. Just because I have diabetes doesn't mean that I can't play sports and do all the things that everyone else does.
8. It's OK to ask me questions about my diabetes.  I want to help you understand what it's like.
9. I didn't do anything to cause my type 1 diabetes, and there's still no cure.
10. Diabetes doesn't define who I am, it's just something I have.

The funny thing about Maddie and her friends is that a lot of her friends feel like they have to look out for her or protect her from harm.  She really thinks it's sweet.  She loves her friends!!

Panic

Have you ever not totally known what was going on, but you could tell that it wasn’t good by the face on the person in charge? To look at a man, that had inspected every square inch of my child’s body, and see his face go pale, and his eyes bug out, is never good. All he said was, “She’s over 600,” and he left the room.

“What’s he doing?” I had such a confused look on my face.

“She’s definitely got diabetes. She’s higher than I’ve ever seen a child be.”

Susan was speaking quietly, as if she didn’t want Maddie to hear her, or as if it wasn’t going to sting my innermost being to hear her blurt out something so dreadful about my child. She cleaned up from checking Maddie’s blood sugar and left the room.

You know, when you are trying not to cry, and you get that lump in your throat, then it kind of burns your nose, and your eyes well up? You know that feeling? Or when you get in some kind of accident and right as it’s happening, you’re thinking, “Great--wouldn’t you know this would happen to me.” Or what about when something happens, and you know that you can do nothing to change the situation or influence the outcome?

I could hear him in his office through the walls. He was talking too loudly. But I could only make out phrases like, “immediately,” “serious,” and “she’s only 5 years old.” I had forgotten that Maddie was actually sitting there on the bench next to me, or that my mom was in the waiting room with my 18 month old. I just remember staring at the tiles on the floor, wondering what I had done wrong for my beautiful daughter to be sick.

“What’s wrong, Mama?” That’s usually a question that any mother shouldn’t want to answer. What should I tell her? How do I tell her what diabetes is, when I don’t even know what it is? Is it going to go away? How can I fix it? Does she have to go to the hospital? What’s going to happen to my little girl’s life???

“I don’t know, Maddie.”

The Date Was June 28, 2006

The first week of June in 2006, our family went to Disney World. Yes, we went in June. Yes, it was 150 degrees outside in the sun all day. And yes, we went to the parks as soon as they opened, and we were there until the parks closed. Maddie was 5 and Reilly was 18 months old. We had lots of snacks, and we ate every meal at the park restaurants, and at the different fast food stands. The kids had every slushy flavor that existed, every cotton candy color that they sold, and ate at every snack food stand that they saw. We were just living it up. That was our vacation, and we hadn't been on one like that ever, and probably won't again for a long time.

For quite some time before that trip, I had noticed that Maddie had terrible dark circles under her eyes. I just thought it was from being tired, or maybe her glasses prescription had changed and she was straining her eyes, or maybe she needed to drink more milk, or eat more vegetables.

She had also started wetting the bed every night. Here is my daughter, who at 2, decided that she wanted to use the potty, and never, I repeat, NEVER, wet her pants again. No pull-ups, no accidents, and no changing the sheets in the middle of the night. This girl had a camel bladder. I went twice as many times as she went during the day.

Maddie had begun to use the bathroom all the time during the day. She would go every 15 minutes. She would go as soon as she woke up. She would go whenever and wherever she was. When she went, it was as if she hadn't been in hours. She also began drinking everything in sight. If you had any beverage, she would walk up to it and down it in a matter of seconds. She would drink the whole glass if you didn't take it away from her. She didn't even care whose it was. If it was liquid, she would drink it.

Instead of buying her summer clothes that spring, I went digging through her old clothes because not only was she not fitting into her shorts that were 4's and 5's, but some of her 3's were falling off of her waist. She had started wearing size 2 and 3 shorts (normally a 2 and 3 year old size) with her size 4 and 5 tops.

All of these things mentioned were strange things that I had noticed over the spring months, but I never put them all together. I just thought she was acting weird, or she was just going through a growth spurt and maybe she was leaving her "baby-ness" behind and turning into a "big kid". I started getting a bad feeling about all of these things when we got home from our vacation because it seemed as if everything was magnified from that point on. All of these "symptoms" seemed to get worse. I realized I had to do something about it, or at least talk to a doctor.

I remember June 27th, 2006, sitting in my driveway, calling my sister, who at the time, was the only diabetic person I knew. She told me things like, "She doesn't have diabetes--you're crazy" and "save your copay, and I'll check her blood sugar next time I'm in town" but something inside of me was making me feel uneasy about the way Maddie looked and the way she was acting. So I hung up with my sister, and still sitting in the driveway, I called the pediatrician and asked to speak with the nurse.

As of right now, 3 years later, I can remember sitting in the driver’s seat, the car running, it was 5:00, and Maddie and Reilly were both asleep in the back seat. The nurse’s name was Susan, and all I remember is her saying, “Well, if you think she has diabetes, we need to get her in first thing in the morning.” There was no appointment made, there were no instructions, just get up, and bring her in! So, as directed, the next morning, my mom and I took Maddie up to the pediatrician’s office. Mom waited in the waiting room, and Maddie and I went down the hall, where we had gone so many times before. All the way, I’m telling Maddie that it’s going to be fine, but they would have to prick her finger, but I would get her a prize if she didn’t cry. At this point, my main concern was whether or not she would let the nurse have her finger.

That was the longest walk down that hallway that I can ever remember.