National Reading Month: You’re Here for a Reason

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 3rd post of our series, PCHA’s Jessica Chenevert talks with us about one special book. Read on to hear why You’re Here for a Reason holds a special place in her heart.

Barrett checking out his book

When I bought this children’s book, I had no idea that the first time I would read it to my son, Bear, I would be brought to tears. Never in my life has a book made me cry. The book is titled, “You’re Here for a Reason,” and it’s written and illustrated by Nancy Tillman. I decided to buy it, because I loved another one of her books, “On the Night You Were Born,” which Bear had received as a gift for his first Christmas. Not only does the book have a beautiful rhyming phrases, but it is written in a way that floats off the pages and can truly relate itself to your life. In my case, the words reached through the pages and spoke to me about Barrett’s journey with Congenital Heart Disease. The book, as far as I know, has no relation to heart disease and wasn’t written with a heart kid in mind, but every word I read applied to it perfectly.

Barrett is here for a reason. Every one of us is. Nancy shows her readers how each of us fits into life’s big picture and how this world would simply be incomplete without each of us in it. As we sat there after reading the book, I held my sweet, strong warrior and rocked him back and forth and thought it was such a perfect gift for children and families living with CHD.

One of the fun things I am able to do at PCHA is pick a quote and pair it with photo to create an inspirational design of sorts. Naturally, I created one using a passage from one of these great books and posted it on social media. To my great surprise, the author herself engaged in the post. I immediately reached out to her on my personal account about my love for her books and sent her a picture of Barrett.

Of course, she responded to those also, and I was overjoyed. A small interaction, but one that would stay with me. Little did I know it would not end there. Last September, I had the privilege of being honored at the Congenital Heart Gala in Milwaukee with the Heart Hero of the Year Award. Our Director of Programs, Amy, knowing my love for Nancy Tillman books, reached out to the New York Times best-selling author so that when I walked up to accept the award I would also have a copy of “You’re Here for a Reason” made out to Barrett, complete with a signature.

Ezra on his 2nd Birthday

Giving parents words that can match the feelings they have for their children is Nancy Tillman’s goal in creating these books. Before I even knew about that, I had felt it. I had already decided it would be the book I wanted to gift to other amazing little warriors and their parents. Just one month earlier, I had given it as part of a gift from Barrett to his buddy Ezra on his 2nd birthday. Now, Barrett and Ezra were born roughly two weeks apart, they had all the same newborn clothes, underwent surgery at the same hospital, and were both living with CHD. Ezra’s battle had been particularly rough, but Ezzie’s mom and I liked to call them twins, because even with different defects, different struggles, and ultimately different outcomes…they were brothers on this journey.

This book has a special place on Barrett’s book shelf and in my heart. Each time we read it, I hope he knows how truly amazing and strong he is and how much he is loved.

 

 

 

Note from the Author:

Dear loving parents,

My own grandchild was born with a hole in her heart, so I know much of the struggle that you are going through.  She is well and happy now and that is what I wish for all your precious children.  I wrote You’re Here for a Reason to speak from your heart. I so dearly hope it does.  Your child is miraculous.

Blessings,

Nancy Tillman

 

 

 

 

Jess lives up the North Shore of Minnesota with her husband Nolan and their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. With a background in several aspects of the medical field Jess. Joined PCHA shortly after Barrett’s Birth and subsequent diagnosis. Now a stay at home heart mom she strives to be an active volunteer as an advocate, committee member, and Social Media Coordinator for PCHA.

National Reading Month: A Q&A on The Love of Reading with Members of the CHD Community

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 2nd post of our series, PCHA asked members from across the spectrum of our CHD Community to tell us what they love about reading. Sharing with us this week, about what reading has brought to their lives, are Megan Setzer from the perspective of her son Caleb, born with Hypoplastic Left Heart Syndrome, Alison Connors, mother of two heart warriors, McKenzie and Archer, and Carol Raimondi, an Adult CHD patient with Congenitally Corrected Transposition of the Great Arteries.

 

PCHA:  Why do you love to read?

Megan + Caleb: I’m still learning to read. I love being read to. I like feeling like I’m part of the story.

Alison: Reading is a great escape for me. When I read I am able take time to myself to decompress. Life can be stressful and having that outlet is so important. Reading is probably the most important skill you learn besides math.

Carol:  I love to read because it relaxes me. It allows my mind to focus on the story, and take me to wherever it is set. I can be in a place where the characters are, and that lets me temporarily forget any stresses or worries I have going in my life. 

 

PCHA: Where’s the best place to settle in with a good book?

Megan + Caleb: Anywhere. My favorite place is to snuggle into my bed and look at books before I go to sleep at night.

Alison: The best place to read a book is anywhere! A good book can be read in the loudest place imaginable, because once you start reading you are taken to a different place anyway!

Carol: I love stretching out in bed when I read. Being somewhere with little distraction is key!

 

PCHA: What’s the best part of your favorite book?

Megan + Caleb: Everything! I don’t really have a favorite.

Alison: For me, I like to read historical biographies of famous figures, like Abraham Lincoln, Che, Jackie O and Benjamin Franklin. Reading about the lives of historical figures and about our past customs in American history is a favorite of mine.

Carol:  I really don’t have one favorite book. Anytime I can relax and read for an extended period of time makes me happy!

 

PCHA: What character, from any book, do you most identify with?

Megan + Caleb: There is a small part of all the characters that I can identify with. I am strong like the Super Heroes that I read about and I’m silly like the funny creatures in the Dr. Seuss books.

Alison: When reading historical biographies I don’t necessarily identify with the characters I read about, but one thing about reading about someone’s history is that the past does sometimes repeat itself so I can see how America and the world hasn’t really changed as much as we all assume it has. Technology has changed but as human beings we are still fighting over the same things, fighting for the same things and uniting about the same things. It’s very interesting.

Carol: I tend to identify with any female lead character. Someone who has obstacles to overcome time and time again, but stays strong and shows perseverance. 

 

PCHA: Do you have a favorite author or genre? What do you like about that style?

Megan + Caleb: Dr. Seuss is my favorite author, because his books are funny.

Alison: Historical biographies are pretty much all I read. I figure I’d like to learn something while I am making the time to read. Abraham Lincoln is probably one of the most interesting people I have ever read about. How he ran the country, how he united with his rival, his views on leadership, and work ethic really impressed me. As a person you are always evolving, so whenever I can learn something from reading, I feel accomplished.

Carol: I tend to vary on the genre I read. Sometimes I will read medical non-fiction, as I enjoy learning about disease management and how others have handled living with chronic illness. Other times, I prefer to go the exact opposite and stay light by reading fantasy books. Anything with a vampire or werewolf will suffice! It is nice to escape reality and let my imagination go wild!

 

PCHA: Have you ready any books involving characters with CHD? How’s they hold up to your own experience?

Megan + Caleb: I have read the book, Zipline…It’s about a girl who had a heart surgery, and she is all better now.  Unlike this character, I have had multiple heart surgeries.  I also have a hard time keeping up with my friends when they are running around the playground.

Alison: I have not yet read any books involving characters with CHD! I will have to look into that! Every CHD story is different, which probably why CHD is not as well-known as I would like. Having over 35 different types, so many different outcomes, and sometimes having multiple CHDs really makes every Heart Family’s perspective completely unique, but I think each of us, whether your child’s ASD closed by itself or whether you child is on his/her 4th surgery, we’re all the same. We’re shocked, worried parents who strive to give our children the best life possible, and we’re not alone in this CHD heart journey. Heart parents and patients are pretty passionate people, so I think I would definitely relate to a book with a CHD character.

Carol: I have read several books with CHD patients as the main character. In some cases, I have identified completely with the feelings they have shared, to the point where it hits too close to home, and I need to put the book down for a few days. In other circumstances, I felt like the CHD patient did not give a good representation of what life is like with heart defects. It was either overdramatized or made to seem like it wasn’t a big deal. I prefer a happy medium between the two.

 

PCHA: What’s missing from bookstores? What book would you like to see on the shelves?

Megan + Caleb: I don’t know what’s missing from the bookstores, because most of my books come from the school Book Fair, in the mail, or are on my tablet. I love it when the Book Fair comes to my school and seeing all the different types of books that they have!

Alison: We lost my husband’s Mother, Nicky, suddenly last year. She was a fiction writer. She worked hard for her kids, and, when they were grown, she worked hard for herself. She went to Columbia College in Chicago and worked there as well. She was the coolest person to have as a Mother-in-Law; every time I talked to her she challenged my thinking, inspired me to be a strong woman, and always gave my husband a hard time, which was fun to see! I always thought we would have more time with her. I would love to see her works put into a book. She always talked about having so many works, pages and pages of unfinished work, a life unfinished. Maybe one day, as a family, we can make that happen. I would love to sit one day, open a book by Nicky Chakalis, and read it to the next generation of our family. For me, that’s what is missing on the bookshelves. 

Carol: I would love to see more books geared towards teens on living with chronic illness, whether CHD or not. I think this an important age group that needs as much information as they can get.  What book would I like to see on the shelf? A manual for life with CHD, from pre-natal diagnosis through adulthood, with chapters specifically for family members, friends, spouses and health care providers. That’s not asking too much, right?

 

Megan Setzer is a mother of a child with Hypoplastic Left Heart Syndrome. With a background in Social Work, it has become her passion to provide support and resources to those impacted by CHD.  Shortly after her son’s birth in 2009, Megan chartered Mended Little Hearts of Winchester as a way to connect area families and to offer support and resources. Under her leadership, the group was honored with the 2012 MLH Group Excellence Award and it continued to grow its network. In 2013, her group expanded geographically and became Mended Little Hearts of the Shenandoah Valley, serving families in the Shenandoah Valley of Virginia and Panhandle of West Virginia. She was elected as the Mended Little Hearts National Board Director in 2013, where she served until December 2016. She is currently serving as a Board Director for the Pediatric Congenital Heart Association.Megan has a Bachelor’s of Social Work from James Madison University, graduating in 1999.  She worked for almost 10 years as a Medical Social Worker, and is now employed in the health technology field as a Clinical Advisor, specializing in care transitions. When she is not volunteering, she is kept busy by her husband and two boys. She loves to read and crochet.

Alison Connors is a mother of three children: McKenzie, Jackson and Archer. Her oldest McKenzie and youngest Archer both had open heart surgery for congenital heart defects. McKenzie and Archer have been in the care of the PSHU team at Advocate Children’s Hospital in Oak Lawn, Illinois since birth. Alison has been married since 2009 to her best friend Christopher, and she recently went back to work as a 1:1 teacher’s aide for children with special needs. She and her family have a busy life, but she has a passion for volunteering and believes that there is healing power in taking part in something that is bigger than yourself. Having two children with CHD threw Alison onto a path she never expected to be on, but a path her family is very grateful to be on. It’s an honor for Alison and her family to share resources, give hope, and support to others who face the same situations that they have.

 

Carol Raimondi is an adult CHD patient and nurse, living with Congenitally Corrected Transposition of the Great Arteries.  She has had 4 open heart surgeries in her 40 years, as well as a pacemaker since the age of 6. After spending a large part of her childhood in and out of hospitals, she developed a passion for nursing. She went to school to become a cardiac nurse. Carol’s many hospital experiences helped her as a nurse to better understand what her patients were going through and  to care for them with that much more compassion and empathy.

Due to worsening medical issues, Carol had to give up the profession she loved. That did not stop her from being a patient advocate, however. She joined her local hospital’s’ Patient Family Advisory Council, which she now co-chairs, and shortly thereafter she joined Mended Little Hearts Chicago(MLHC) as an adult CHD liaison. She then expanded her work in the CHD community by starting an adult and teen CHD group within MLHC and became an  Ambassador for the Adult Congenital Heart Association. Currently she sits as the Pediatric Congenital Heart Association of IL(PCHA-IL) Vice President and State officer, after a recent transition from MLHC. Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.

National Reading Month: It’s My Heart Book

For the month of March, PCHA will be focusing on the theme of National Reading Month. In the first post of our series, the Children’s Heart Foundation shares an overview of the It’s My Heart book, a resource for families affected by CHD. PCHA and the Children’s Heart Foundation are partnering to include the It’s My Heart book in every Conquering CHD Kit. 

 

 

 

Receiving a congenital heart defect (CHD) diagnosis is often an emotional, confusing and overwhelming time.

In 2003, The Children’s Heart Foundation (CHF) – along with a dedicated group of doctors, nurses and parents – set-out to address a dire need noted by patients with CHDs and their loved ones. Although doctors and nurses often explained things well, written materials were either too simple (pamphlets on how the normal heart works) or too complex (medical journals). There was a need for a resource guide with clear writing and illustrations on the most common kinds of heart defects, tests, equipment, surgical procedures and medications.

Published in 2004, It’s My Heart, was written in plain, understandable language. It provides descriptions of the types of CHDs, explanations of the various tests, surgical procedures and treatments for CHDs. This book also contains helpful “before and after” diagrams, a glossary of medical terms, and much, much more.

“Hours after my son was first diagnosed with a CHD at 2 days old, our nurse handed me a copy of It’s My Heart in the hospital. I remember being so scared and confused at that time; it felt as if everything was broken,” said Sally Powers, CHF Executive Board Member & Heart Mom to Sam.

“But that book was one of the first resources I had to help lift me up and move me forward on our journey with CHD,” Sally continues. “And that made me feel hopeful.”

Today, in its’ second edition, It’s My Heart is still a widely used resource book. CHF distributes this book to patients, parents, family members, healthcare professionals and friends of congenital heart defect patients worldwide.

It has always been a high priority for CHF to offer the book free-of-charge. Thanks to support from Medtronic Foundation, Northwestern University Dance Marathon 2011 and various grants, CHF has been able to continue to do so.

“I’ll always be thankful that The Children’s Heart Foundation knew the need for newly diagnosed parents to have that kind of easy-to-understand resource at such a critical time,” Sally said. “My son is 8 now and I still refer to It’s My Heart often.”

To order your free copy of It’s My Heart, please visit: http://weblink.donorperfect.com/Itsmyheartbookorder.
If you have any questions or to place an international order, please contact Rosemary at RWheeler@childrensheartfoundation.org.

 

 

About The Children’s Heart Foundation

The mission of The Children’s Heart Foundation is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects. For more information, please visit:www.childrensheartfoundation.org. Follow us on Facebook and Twitter.