Moira McCarthy - Raising Teens with Diabetes: A Survival Guide for Parents

Moira McCarthy

with technical review by Jake Kushner, MD,

and Barbara J. Anderson, PhD

Text copyright 2013 Moira McCarthy

All rights reserved under International and Pan American Copyright Conventions.

No part of this book may be reproduced or transmitted in any form or by any means electronic or mechanical including photocopying and recording, or by any information storage and retrieval system, without permission in writing from the publisher.

This edition is published by Spry Publishing LLC

2500 South State Street

Ann Arbor, MI 48104 USA

10 9 8 7 6 5 4 3 2 1

Library of Congress Control Number: 2013932653

E-book ISBN: 978-1-938170-21-8

Disclaimer: Spry Publishing LLC does not assume responsibility for the contents or opinions expressed herein. Although every precaution is taken to ensure that information is accurate as of the date of publication, differences of opinion exist. The opinions expressed herein are those of the author and do not necessarily reflect the views of the publisher. The information contained in this book is not intended to replace professional advisement of an individuals doctor prior to beginning or changing an individuals course of treatment.

Who else but for Sean, Leigh, and Lauren,
who have been willing to take this crazy ride with me.
And to every Diabetes Parent out there.
We are family.

August 1989 was hot in Washington, D.C., really hot. Desperately hot. I remember Marissa, not quite two, playing on the swing set in the heat. She was thirstythat was the heat, right? But she was thirsty at night, really thirsty, begging for water, all night and every night, for far too long. That wasnt the heat. That was something else. Just days after turning two, Marissa was diagnosed with type 1 diabetes.

My wife, Brenda, took Marissa to Childrens National Medical Center, while I scrambled to return from a business trip. At Childrens, we were luckyvery luckyto be seen by a pediatric diabetes team, who told us, basically, not to worry and that everything would be OK. We had a great diagnosis experience, one that would guide us as Marissa grew up and that put our family on a path to share our experiences, many years later, through Children with Diabetes.

Today, nearly 24 years later, Marissa is grown-up. She graduated with a Bachelors of Science in Nursing, passed the state boards to earn an RN, and married Adam, whom she met in nursing school. Marissa and Adam live close to Brenda and me; they work at a beautiful new hospital just down the road; and we spend a fair amount of time together as a family. And our daughter is perfectly healthy. For what more could we possibly ask?

As parents, we have one important jobhelping our children grow up to become happy, healthy adults. Type 1 diabetes makes that job more challenging. What should be simple is not. For younger kids, you worry about care at school (who will be there if something happens?), how to take care of sleepovers, helping young friends understand diabetes, helping grandparents overcome their fears, among many things. For teens, you worry about care at school (will they remember to check blood sugars and take their insulin?), driving, peer pressure, dating, and what in the world to do about college. Add in the normal tension that comes from adolescence and you have the makings of potentially serious issues.

Thats where Moira McCarthys Raising Teens with Diabetes comes in. Moira opens her heart to us, sharing her familys experiences helping her daughter Lauren through her teenage years. With kind, knowing wisdom and a wry wit, Moira takes on the task of helping us to navigate adolescence with type 1 diabetes. Whether your teen was recently diagnosed or your family has been living with type 1 diabetes for years, youll find much to learn here. Confused about the various insulins available? Moira will help you consider the options. Injection therapy or an insulin pump? Checkand why not both? Continuous sensors? Yep. What about the impact of diabetes on family dynamics? Well covered. Consider Raising Teens with Diabetes as your compass and Moira as your captain through the potentially rough seas of the teenage years with type 1 diabetes.

The suggestions and strategies within these pages will yield the best results if they are shared with your spouse, partner, and other adults with whom you share the responsibility of shepherding your teen to adulthood. Its not so much presenting a united front. Its more that these suggestions and strategies are valuable and can help enormously, so its important for everyone to understand them and use themand that includes your teen. Theres no reason not to share and discuss Moiras wisdom with your teen. Chances are, they want to do well with their diabetes care, just like you want them to.

In my many years of leading Children with Diabetes, I have had the great fortune to meet some amazing people. Two are worth notingWill Cross and Sebastien Sasseville, both of whom have type 1 diabetes. These two gentlemen have climbed to the top of Mt. Everest. I dare say that if you can climb to the top of the world with type 1 diabetes, there truly are no limits to what you can do.

JEFF HITCHCOCK

Founder and President, Children with Diabetes

When my daughter with diabetes was about eleven, I knew I had it all figured out. In fact, if I could have chosen a moniker, it absolutely would have been Master of T1D! (with a seldom-used-by-me exclamation point because, gosh darn it, I was the Master!). My daughter was the model patient. She checked when I needed her to. She bolused like a champ. She did all her own site changes and shots and all that kind of stuff. I was her personal assistant, logging blood glucose values, studying charts to make changes in doses, keeping the insurance cads at bay. Clearly, shed been listening to me since her diagnosis at six years old. Yep, we had it all down.

I felt sorry for some of my friends with older kids with type 1 diabetes (T1D). They struggled. Their kids rebelled. Their A1Cs skyrocketed. Im so glad, I thought to myself (with more than a moderate dose of Im just a great Mom smugness), that I raised Lauren not to be like that.

What I should have been thinking is this: Be careful what you crow about. Because in a heartbeat, it all can change.

Thats what happened when the teen years hit. Seemingly out of the blue, Laurens life with diabetes changed. Part of it was hormones: her body was playing games with her that even a crackerjack medical team could not figure out. Part of it was my own burnout: when she moved toward independence with her disease it was easy for me to think shes got this, when in fact she was not ready. Another part of it was free will: her brain was playing games with her diabetes that shook me to the core and, since I had little clue it was happening, sent her on a downward spiral that bottomed out in an intensive care unit.

There she lay, tubes in arms, trying with all her heart to tell her mother and her doctors that shed done this to herself. But each time she opened her mouth, someone else popped in to remark about the model patient and how her pump must have broken, or insulin must have gone bad, or the like. She told me later she didnt have the heart to steer us all right. She didnt want to let us down. Eventually, the labs told the story and she fessed up. Shed somehow lost her way with diabetes. Shed been lying and faking and skipping boluses and more. Once she told me, the clues were all lined up in front of me. I should have known. I should have seen. But I didnt