Tuesday, November 07, 2006

A Mother's Perspective

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.


Anonymous said...

That was such an honest post Penny. I hate that fear that we don't talk about. I too am scared of DIBS but it has eased some now that I have gotten to know all the adult PWDs here in the OC. I hope one day it will ease for you too. Riley is such a beautiful blessing, as is Holden. You are a very blessed mommy.

Scott K. Johnson said...

Very powerful post Penny.

I find that when I get myself all worked up over things (like I often to), it helps me to think about all of those before me.

And to think of how I made it through just fine with all those years.

To do that, and witness that, and recognize that many of these people didn't have the tools we do today.

Can you imagine trying to make dosage adjustments based on the approximate amount of sugar in his urine? Urine that is HOURS old?

I know - amazing isn't it?

And I look back on all of the things I did growing up, without all of the knowledge I have today, and wonder how in the heck I made it.

Riley will be just fine - and having such a great mom and family helping him along these young years will pay dividends for the rest of his life.

We are strong, and we are survivors. Sure, we have trauma every now and again. But we deal with it the best we can, and we continue living life.

Sandra Miller said...

Penny, I started reading this post on Bloglines, then had to stop.

Came back to it later, and again, just could not continue.

And finally, here I am. At 2 AM (between checks) reading.

Maybe it's because we've hit a rough patch lately, but it was really hard reading this post.

You just capture the perspective-- fears and all -- perfectly.

From one mother to another-- (((HUGS)))

Anonymous said...

I don’t know how I will feel when Gracie starts requiring more intensive insulin therapy, but I can say this, I can imagine feeling this way. One day at a time, I guess……Thank you for sharing, I’m sure this wasn’t easy to write.

Jamie said...

You have definately taken the fears of all the Mom's and Dad's of the O.C and written them down word for word. I don't like to talk about DIBS either. In fact, I don't even mention it to anyone - no one I know would understand that fear - the reality of that fear.

Like you, I am constantly checking Danielle - first, to make sure she's still breathing. I thought I was the only one that did this. Every morning when she wakes up a wave of relief washes over me - cause she's still here with us, alive and happy.

My heart breaks in two thinking of all this burden being put on her someday. She's two, but she knows how to load her glucose monitor, load her lancette, swab the area - she knows how to wipe the blood after the poke, stick the monitor up to it and test. We praise her when she does this, but my head is screaming "NO! She shouldn't have to be doing this!!!"

Thank you for talking about the things we DON'T like to talk about. At least we're not alone in this.