I can’t post about what it feels like to live with diabetes. I don’t know what a high of 400 or a low of 40 feels like. I don’t know what it feels like to prick your finger upwards of 10 times a day. I don't know what it's like to give yourself an injection just to have a little snack. I just don’t know.
I wish I did.
You don’t know how badly I wish I did. If I could take all those highs and lows, if I could take this disease from Riley and keep it as my own, I would. I wouldn’t think twice about it.
But, I can’t. You don’t know the nights I’ve spent praying, “Please God, just take it away from him and give it to me.” It just doesn’t work that way.
I’ve asked others to write about what living with diabetes means to them. I can’t do that, but I can tell you what it’s like to live as the mother of a child with diabetes.
First, I want to state that I am not writing this trying to get sympathy. I am not the one with a chronic disease. I’m just the one handling this disease until Riley can handle it on his own.
This post is hard for me to write. To write this post, I will have to ponder the bad things. The things I try to keep tucked in the back of my mind, the things that somehow find their way into the forefront sometimes. The things I try to keep locked in the box.
When Michael and I got married, we were not planning on having anymore children. We already had Holden, who Michael later adopted. I never planned on having more children and Michael was fine with that.
But, a year and half into our marriage, I was late one month. I'm never late. We just knew I was pregnant. It was not planned. I took a pregnancy test. It was negative.
We were both a little disappointed. Turns out, once faced with the possibility of having another child, it sounded great. A couple of weeks later, we decided to try to have a baby. Two weeks later, I was pregnant with Riley.
I shared that story with you because diabetes has taken one of the happiest moments in my life and tainted it. When I think back to the beginning when I was first pregnant, I can't help but feel a little sad for what was to come.
Don't get me wrong, I wouldn't change it. Knowing what I know now, I would still do it all again. Riley and Holden are the best things that have ever happened to me. But, when I think back to Riley's birth, I can't help but think, "We had no idea what was coming down the road."
My desk at work is covered with pictures. Many of them are pictures of Riley before diabetes entered his life. Every once in a while, I catch myself staring at them and thinking, "We were so happy and carefree then." Sometimes a tear will slip out because my heart aches to have back the Riley that didn't have diabetes. Not that I don't love the Riley with diabetes, I just wish he didn't have to deal with this disease.
You see, I'm basically a happy person. But, diabetes sneaks a jab in almost on a daily basis. Sometimes I'll just be sitting on the couch and Riley will run through the living room and the thought will cross my mind that he has diabetes. A sadness overcomes me.
Almost everything is bitter sweet, vacations, soccer games, Christmas, all tempered by diabetes. Every single thing in our lives has diabetes hanging over it. I have to look through the diabetes fog just to see what's going on.
The best thing about this disease right now is that it doesn't consume Riley like it does me. He doesn't have to count carbs or try to figure out how much insulin to give. He doesn't wake up several times a night to test sugars. I do all of that for him. I'm happy to do it.
That way he doesn't have to worry. He feels the lows and the highs, but he doesn't have to worry about what to do about them. He picks out what he wants to eat without worrying what it will do to his sugar. That's my job. Worrying, watching, praying, hoping.
But, the pain comes from knowing that one day, all of this is going to be his to bear on his own. If I could handle it all for him forever, I would. But, that's not very practical.
So, I've begun teaching him a little here and there. He can tell you what to do if his sugar is low or high. He can test his own sugar and read you the number. He hasn't quite figured out what's low and high yet, but that will come.
Teaching him to care for himself is a necessary evil. It's painful to watch him struggle to get the strip in the machine. It's painful to watch him poke his own finger. Even though he says it doesn't hurt, he still scrunches his face up everytime he sticks his finger, just bracing himself for the prick of the needle.
I don't worry about future complications all that much. They cross my mind occasionally, particularly blindness and kidney failure. But, if they come, it will be farther down the road. I have too much of the here and now to worry about.
I worry on a daily basis that something bad will happen to Riley. There is always that possibility of a low. It's always lurking. If Riley feels the low, he will often say "My head feels funny." Several times a day I find myself asking, "How's your head feel?"
I worry about Dead in Bed syndrome. I can't help it. I read a post by someone else (I don't remember who right now) that said their mother called them every morning to make sure they had woken up. This person didn't understand. Dead in bed syndrome is not all that common, they said. But, I understand. It's there. It happens.
Michael and I take turns getting up to check Riley's sugars during the night. Depending on how his sugars are, we will test anywhere from 2-4 times a night. It's usually only 2 times though.
But, when it's my turn, I walk in and turn on the light. As I'm turning on the light, I stop breathing for just a moment. The first thing I do as soon as the light clicks on is to look for the rising and falling of Riley's little chest. This means he's breathing. It means he's alive. I do this every. single. time.
I'm terrified of finding him dead. I just can't help myself. I really do brace myself for it everytime I get up to check his sugar. I've never told anyone that before. Michael doesn't even know. It's just a terrible fear that I have. One that won't go away.
I worry about him going into DKA. Even though I keep a close check on his sugars, it doesn't mean it can't happen. A little bug that would keep most people down for a day or two, could kill my child. Riley getting the flu is one of my worst nightmares. Even though he has had the flu shot (as have all the rest of my family), he could still get the flu or a terrible virus.
Both would wreak havoc on his sugars and could make them uncontrollable. Several months ago I got an email from another mother who had just learned of someone whose 8 year old grandson had died from diabetes. He had gotten sick and gone into DKA. As a result, his brain had swelled and he had died. 8 years old.
You can just never feel like you're in control with this disease. I try to fool myself sometimes into thinking I can handle anything that diabetes throws at me. But, I can't. I can't handle losing my child.
I can't imagine living my life without him.
But, on a daily basis, it crosses my mind that one day, I may have to.