Yep, your special

“Do these make me special”, I hear my son Donovan say – or at least I think that’s what he said. I’m trying to figure out how much insulin to give Evin. I gave him 1/2 of a bagel…did he eat 2/3 or 3/4 of it? Does it really matter, you ask? When you are only 4 and take just a little bit of insulin, those carbs do matter. And I am sitting at 2.3 units. I hate .3. I can only give insulin in ½ unit dosages, so what am I suppose to do with .3? Run him a little high or risk that low. I look at our “bible”, our log book. He had lots of activity this morning…I’ll go for 2. But after his normal morning spike, he didn’t come down as much as he usually does. Maybe I’ll do the 2.5. But I’m about to put him down for a nap and I get way too nervous when he is sleeping. I’ll go for the 2. You can see why I wasn’t giving Donovan my full attention.

“Do my glasses make me special?” I hear his voice again. We had picked up his first pair of glasses yesterday and he has done great with them. I am so proud of how he has adjusted, telling him so as much as possible. Since he has not asked once to take them off, I know he is seeing better. “You were special before the glasses, honey.” I say it a bit off handedly, but the pen is primed and I call for Evin. “No, Mom”, he says, “Do my glasses make me special like diabetes makes Evin special?”

That certainly gets my attention…and makes my heart ache. Donovan is my sensitive one – so very empathic. He has had a really hard time with they whys of this whole thing. We have tried to explain, but since I don’t understand, I know he doesn’t. When he asks over and over again why Evin has diabetes, I usually say that that is just how he is made and its one thing that makes him so special.

I bend down and give Donovan a hug. I honestly don’t know how to handle this. I know all about the siblings feeling left out and it’s always at the back of my mind. We have tired not to make diabetes the center of our lives, but this horrible disease has taken over everything.

“You are very special, Donovan. You are funny and smart and make us all laugh. You care so much about how we feel, especially your brother. Your glasses just add one more thing to your list of special things.”

“So my glasses do make me special,” he says with a huge smile on his face. A truly Donovan smile. I have to remember he is only four. “Yep, little man, they make you special”

He hops off happy as a clam. I stand there trying not to cry and call Evin once more.

It's not the sugar

It happened again today, and frankly I’m sick of it. Tomorrow will be 4 months since Evin was diagnosed and I don’t know how many times I’ve explained that the kid does not eat too much sugar. That is not why he is diabetic folks, so shut the hell up. It first started at his preschool. Evin missed 3 days while he was in the hospital. When he returned, many of the moms weren’t sure what to say. A few asked how he was feeling, and a few asked what he was eating to cause this. It caught me by surprise at first and I did my best to explain how type 1 was different. As time went on, more and more people made similar comments.

Today it was at soccer camp. We tested Evin’s blood in the parking lot before the camp – 303. We have been dealing with spikes in his blood sugar after breakfast almost every day since the diagnosis (and no one seems to be worried about it except me). He said his head hurt but he wanted to play. So off he went with his brother. I went to the only shady place on the field with the other moms and a few dads. It was hot – 85 at 9:00 am. As the parents made idle chit-chat, the coaches had the kids play – and they played hard. Fifteen minutes later, Evin comes and tells me his sugar is low. This is new for him, figuring out that something is happening in his body and then telling me. I was pretty convinced it wasn’t low, but I did think his sugar may be dropping. I tested him and he was at 185 – over 100 points in 15 minutes. This is where being the non-diabetic person is so hard. I have no idea how that 100 point drop feels, but I’ve heard it’s not pleasant. I tried to explain how this feeling (that I can’t feel) is different than his lows (another thing I can’t feel), but he’s only 4 years old and all he knows it that something is feeling funny. I give him a couple of mini nilla wafers and off he goes. That’s when I notice everyone looking at me. I see the pity first...and then the knowing looks. Someone says, “He’s diabetic?” and I say yes. And then it comes...”Wow, he must eat lots of sugar.” My first reaction was to slap the women upside the head, but instead I took the time to explain how type 1 was different. I don't think anyone was really listening.

Four months and I’m already tired of it.

And so it begins...

I don’t remember much about that day. Being winter, I’m sure it was cold, and I have a vague feeling it was sunny. My son and his twin were six weeks from their 4th birthday and both were sick. But Evin was constantly drinking, yet could not quench his thirst. I didn’t think much of it at first. But I did keep track and when he had consumed over 100 ounces in 24 hours, I knew it was something. I expected millions of hits when I entered “toddler excessive thirst” on Google, but only one answer stood out…juvenile diabetes. It was February 27th, 2007.

From then until now, our story is one that many people have told – way too many people. Our lives changed that day – our son changed that day and we are still trying to find out who we will all become. I am still haunted by Evin’s cries of, “Mama, Mama please don’t hurt me”, and of Donovan begging me to just leave his brother alone. I returned to the place where I found that first answer over and over again. It is through the Internet that I have learned so much about this hideous disease. And it is through the Internet that I have come to realize that I have so much more to learn and yet will never fully understand. Through the efforts of many, many people who are willing to put their stories and knowledge out to the world, I have learned so much and gained such solace. Until now, I have never thought of starting my own blog, but I have been moved to tell our journey by those who have told theirs before me.

And so it begins…