Wednesday, February 21, 2007

Parenting a child with diabetes

I’ve been thinking a lot lately about the parents out there who have just learned that their child has diabetes.

What would I say if a mother approached me and said, “My child was just diagnosed with diabetes yesterday.”?

Is there really anything that can be said? There are really no words of comfort to give. There is nothing to say to make it better. But, I’d try.

If nothing else, I’d be there to hold their hands and answer their questions. Even though, unfortunately, a lot of the questions they might ask really have no answers.

I know I’d try to convey to them that things will get better, but they probably wouldn’t believe me.

I remember when Riley was first diagnosed, I kept hearing, “It will get easier.”

And, I kept thinking, “No it won’t. It might have gotten easier for you, but it won’t for me. My son has a chronic disease and that is not going to change.”

But, somehow, even though the chronic disease part isn’t going anywhere, things did get easier, at least a little.

I think maybe the worst part for most parents is worrying that they’re not doing everything right. (which is impossible by the way)

I mean, we spent one night in the hospital and then I’m supposed to come home and be a pancreas for my 3-year-old son. I was armed with the knowledge of drawing up and injecting insulin and a vague understanding of counting carbs, but that was pretty much it. And, there is so much more to it than that.

The hard part is realizing that you’ve got to learn as you go. Of course your endo is there to guide you a bit. But, they can only do so much.

If there’s one thing I’ve learned, it’s that taking care of diabetes is a lot of guesswork. Now, once you get the hang of it, it’s an educated guess, but it’s still a guess nonetheless.

You’ve got to get to where you’re OK with that. There is no x + y = good blood sugar.

That was really hard for me. I thought you give him the insulin to cover the carbs and his sugar will always be in range.

I quickly learned that his sugar is often not in range no matter how hard I try.

When Riley was first diagnosed, I would sit for hours and look at his log book trying to figure out what I did wrong, why his sugar went up to 350 and then down to 57.

I’ve learned that usually it’s not anything I did wrong or anything that Riley did, it just is what it is. That’s a hard pill to swallow.

As parents we are supposed to protect our kids. We are supposed to fix things and with disease there’s no “fixing it”. Try as hard as I might I can’t fix it. I can’t make all of his sugars be in range.

Now, does that mean I should just give up? Heck no. It just means I have to be resilient. No matter how I tired I am of trying and not getting the results I want, I have to keep trying. I don't have a choice.


So, for any parents out there who might be reading and your child is newly diagnosed I wanted to leave you a few tidbits that have helped me.

#1) Keep good records. Even if you’re tired at the end of the day, log those sugars. They are your key to recognizing patterns. And recognizing patterns lets you know where you might need to make adjustments in insulin. And, by pattern, I mean at least 3 days worth of similar sugars at similar times.

#2) Don’t obsess over a few high sugars. (Yeah, I know, it seems impossible.) I used to freak out ANYTIME Riley’s sugar got high. I’ve kept all of his records and one time I went back and looked at his sugars from his first few days home. There were a few high ones, but they were way better sugars than what I would see down the road. But, I remember panicking a lot back then if his sugar went over 250. Now, at the end of the day, I go through and average his sugars. It’s really helped a lot to put it all into perspective. All of the sugars are not going to be OK, but I know at the end of the day if his average blood sugar is OK, then we’re on the right track. This is also another good way to notice patterns. If he has a few high days in a row, I know some adjustments might be needed. ( This only takes a few minutes. I usually do it while I'm watching TV.)

#3) Don’t forget to let your kid be a kid. (That probably should have been #1 on the list) I try very hard to let Riley be like everyone else as much as I can. I let him have cake and ice cream at birthday parties. He has a cookie or two for dessert every night. He got a sucker after getting his hair cut yesterday. When he was first diagnosed I would freak out about birthday parties. I would go in the bathroom and cry when he ate his cake. But, I’ve since figured out how to dose for birthday cake and for ice cream. The only way to learn how to deal with things, like cake and ice cream, is to let them have it and learn what it does to their sugars and then figure out how to fix it. There is not really much that your child can't do. Really.

#4) Test their sugar and test it often (kind of quoting Wilfred Brimley there) Don’t ever let someone tell you you’re testing your child’s sugar too much. You are the parent; you’re paying for the strips, test as much as you need to. I tested more than Riley really needed to be tested in the beginning. It was more for me than for him. It helped calm my fears. But, since then the testing has decreased. But, I still test anywhere from 9-12 times a day (on average). If he has a string of lows I test more, of course. You will know how often you need to be testing. And, to go along with that, don't let anyone tell you you're getting up to test too much at night. Again, you do what you've got to do.

#5) Never stop being an advocate for your child. (That kind of goes with what I said in #4. Don’t let their endo brush you off when you feel like you need to talk to them. (If they keep doing this, find a new endo. Riley's endo lives 3 hours away. But, I trully believe she's the best there is and it's well worth the drive.)Don’t let others make comments about your child having "bad diabetes” without correcting them (nicely, of course). We are their voice. We’re all they have until they can do it on their own. Educate, educate, educate. That is the key to getting people to help find a cure.

OK, I didn’t mean to ramble. Nor did I mean to sound like the authority on parenting a child with D. I am far, far from it. Most days I feel like I'm flying by the seat of my pants myself.

I'm just sharing a little bit of the knowledge I've picked up. I'd love to hear some of yours.

9 comments:

Jonah said...

Looks to me like this would be good advice to a new diabetic too.

Jen @ Diabetia said...

I don't know about easier - it gets different once you've settled down into the day to day routine.

Most of the time I forget that I have a daughter with a chronic illness - thankfully.

For us, the key was to change our diet as a family and to go on living as normally as possible.

And to keep on smiling - whatever!

Scott K. Johnson said...

Penny,

Great advice.

I think it would be very hard not being able to learn everything right away. I would be driving myself CRAZY trying to make it ALL sink in that first night.

What an impossible demand. Heck, I've been at it for almost 27 years and I still don't have it all figured out.

Laura said...

Hopw All is Well :-). and btw Great Advice

Lyrehca said...

Great advice, and a great sense of growth and knowledge. Nice post.

Danny said...

Great post, especially the part about letting your kid be a kid. My son is 9 and was diagnosed with type 1 diabetes at age 4. If I were to tell him, "no sugary snacks," he'd probably sneak them anyway, and I wouldn't be able to compensate for them. Instead, I tell him, "You may have a snack, just let me know so we can count the carbs."

We've been very fortunate, with supportive school administrators and a great endocrinologist just 40 minutes away. We ALL try to eat healthy, because it's good for ALL of us, but on the other hand we never skip dessert just because our son has diabetes.

The one thing I'm thankful for is that Ethan was diagnosed when he was 4. I think it would be a lot harder for him to adjust to the challenges of diabetes if his first diagnosis came now at 9.

I'm glad I found your blog. Thank you.

Shannon said...

These are awesome pieces of advice and I agree with every one of them. Parents would be served well to accept your advice.

I would also add:

The parents are the experts first and foremost over the diabetes team.

And, read read read everything you can get your hands on...education is empowerment.

Ask the doctors and nurses every question that comes to mind and even question the advice they give if it doesn't jive with what you think should be done. Like I said with reading, education is empowerment.

Penny said...

Danny,

I'm glad you found my blog too.

Shannon,

You're so right. I read a ton of books when Riley was first diagnosed and also when he started the pump. I also read a lot of things on line.

And, yes, we are the authority on our children, not their endo. This is such an individualized disease. What works for one may not work for another. The parents (or the PWD) themself is the authority.

Sandra Miller said...

Wonderful advice, Penny.

You've learned a great deal in a very short time.