I recently read a book called Heart Warriors: A Family Faces Congenital Heart Disease by Heart Mom Amanda Rose Adams about her journey with her now 9yr old son, Liam's, battle with Congenital Heart Disease (he has HRHS like me.. but more complex than me).
I've known Heart Mom Amanda for about 4yrs, but only online through messages, forums, etc. Amanda started Hypoplastic Right Hearts which is an online support group for parents, family, and adult survivors of HRHS. I first "met" her through her support group/organization and for a year she let me have my own column in her newsletters called "Heart to Heart with Lauren" which I was SO honored to have had the chance to do that and even more honored to have "met" Amanda. I hope to one day meet her in person and give her a HUGE hug!
I got her book right before my big cardiology appointment and in an emotional state. I picked it up and started reading it right away. But after my cardiology appointment and getting overwhelming information and news, I put the book aside for awhile. Tried to pick it back up a few times, but had to put it back down. Finally, last week I was able to keep reading without putting it down and I finished it this past weekend.
Heart Warriors is such a beautifully written book that is packed with such an emotional roller coaster that Amanda went on with her amazing warrior son, Liam. It is touching, inspirational, heartwrentching, and so much more wrapped into one. I know I'm probably one of a handful of Adult CHDers to read it, but I'm glad I did as it gave me a small glimpse into what Heart Parents go through. I know all Heart Parents cope differently and handle their situation differently, but many have some of the same emotions. I know my parents, who are Heart Parents, did not go through all the same emotions and feelings as Amanda, but while reading some of the things she went through were similar to what my parents had told me they went through. Reading this made me feel so much more appreciation for my parents and the hell they went through with me. Not that I didn't already have appreciation, but since I got a more understanding of things it made me even more appreciative. Heart Parents are hereos just like CHDers (even though I don't consider myself as a hero at all).
It was a hard book to read as I never like reading about those in pain in anyway as it breaks my mended heart to pieces. No one likes to read sad stories, but we can learn from other's challenges in life to help us in our life even in a very tiny tiny way. This book should make those NOT touched by a CHD be even more grateful for their health, their children's health, and their family's health. Those going through any hard time with an illness, this book will let them know they are not alone. Amanda not only offers her story of getting through every parent's worse nightmare, but offers tips and advice about grieving and getting through tough situations like this that one maybe thrown into.... even if it's for an Adult CHDer who has lived with a chronic illness their whole life those grieving tips and advice can be helpful as many of us don't fully understand everything and really "get it" until we are teenagers or young adults. I know I went through my own grieving process when I was about 16 and learned EVERYTHING about my heart and fully got that this was very serious... that my heart was fragile. It's hard and you go through many ups and downs... including some of the steps of greif Amanda mentioned like Anger, Denial, Depression, etc... I know I was angry and did go through a bit of depression. It's how you move forward to help yourself in order to continue to live a life and not miss out on all the good, the happiness, the joy, etc as life is already short as it is, that you don't want to miss out on living despite extremely hard times. I know my life has not been all crappy or sad... despite everything I've had a pretty "semi-normal" life with so much love, laughter, and joy.
Reading the last part of the book as Liam was older and understood more, I could relate to what Liam felt on many levels. I too hated tests especially Holter monitors and EKGs because of the stickies hurt coming off. Actually, I still hate them and hate the marks they leave. But it's part of my "normal" like they are part of Liam's "normal". Amanda mentioned that all these tests, pokes, prodes, surgeries, etc. are part of Liam's life that he doesn't know different and he takes it in stride and has this zest for life despite everything, yet pains her so much as she knows most people never have to have that be part of their "normal". That is exactly how my parents have always felt. They hate this is so "normal" to me, yet are so proud of me for taking it all in stride and not letting it get in the way of my joy for life. Us CHDers are special creatures not just for what we have been through, but that we can still love life, be full of life, be full of joy and zest... that we still dream and we act like any other person despite our challenges. I truly believe we are like this because we know that we fought SO hard to be here and we don't know how long we will be here, so we embrace life and LIVE to the FULL no matter how long we are here.
Amanda talked about Adult CHDers and the few that have now passed, yet have touched her life forever as well as the one's still here continue to give her hope and inspiration for her son. I know I'm included in her hope for her son and it warms my mended heart that I give hope to CHD parents. I love giving hope and love giving support where I can. Amanda talking about CHD adults who have touched her heart gave me warm fuzzy feelings inside to know how us Adult CHDers mean to CHD parents... that we are an important part of the CHD community and that we need to keep being part of it.
Amanda mentioned how us Adult CHDers should never be ashamed of our scars as they are badges of honor. I agree with that and have always thought of my scars of badges of honor. BUT some Adult CHDers do not like to show off their scars, but that does not mean they are ashamed of them... I know a few Adult CHDers who don't like to show off their scars, but they still love them and know what they stand for. Some Adult CHDers don't like their scars and that is OK. Just because they don't like them does not mean they are not grateful to be here and they know what they stand for... I know a few Adult CHDers who don't like them, yet are just as grateful to be here. The end thing is... all CHDers are different and cope with their CHD differently. Their scars are on their body and so they have a right to feel however they want to about them... all that matters is that they are grateful to be alive and grateful for the hell their parents/family went through to fight for them, that they realize they are beautiful with the scars, and that they are strong for what they went through. In high school I did not like showing my scars as I was a bit self conscious as I did not want people staring or asking... I especially did not want a guy to say I was not pretty because of them. After high school I decided that it did not matter what others thought of my scars... all that mattered was that I loved them and were proud to have them. Come to find out most guys do NOT care about the scars or that be the first thing they notice on a woman.
What Amanda said at the end of the book happened to be something I'm so glad she mentioned and I totally agree with her wholeheartedly. Amanda talked about how Liam has dreams about his future, he has plans onto what he wants to do as an adult... one of them to be a dad. That Liam just keeps living and does not dwell on his special heart. Amanda said it's SO SO important to never crush his dreams and to keep letting him live HIS life to the fullest he can. She may not know how long Liam will be around for, but she owes it to him to let him life his life to the fullest while he is here. Amanda said that CHD parents should not put their fears on their CHDer and hold them back from living as "normal" or "semi-normal" they can. She said she knows Adult CHDers who call other Adult CHDers "cardiac cripples" because their parents held them back because of their fear of them dying or not growing up or not being able to do anything. I too know there are Adult CHDers like that. My parents did NOT know how long I would be around for... they were told before when I was little that there were no promises of me making it to a teenager or an adult. My parents knew that and they did have fear, but they let me live. They gave me as "normal" as a life as they possibly could... I went to school, I made friends, I had sleepovers, I went to parties, I was in activities, etc. I'm SO SO SO grateful my parents gave me that. Them doing that has helped me in being an independent adult. One thing my parents did do, was taught my how to be responsible for my health and ask questions which has also helped me GREATLY in taking my CHD into my own hands and making sure I do the best I can to be around for a long time. I can't control everything and I don't know what the future hold or how long I will be around, BUT I CAN control the care I receive, the questions I ask, the things I eat, the things I do, and the attitude I have.
Amanda's book Heart Warriors is SO worth the read. You may need tissues, but know that you will come out the other end with either learning something new, a new understanding, and/or knowing you are not alone... or at the very least if you are not effected by CHD, have been inspired to be a little more grateful and loving to your loved ones and your life.
Want a chance to own your own copy of Heart Warriors by my friend Amanda Rose Adams?
Well I have TWO copies to give away!! That's right TWO!!
Here is how you can be entered to win one.... you can get up to 2 entries:
1 Entry- Leave a comment on why you'd like the book
2 Entry- Leave a comment saying you got a NON CHD friend or a family member to "like" Amanda's Facebook, Heart Warriors page... make sure you have your friend or family member write a comment saying "Heard about your book through my friend or family member so and so" and leave your name in your comment so I can verify this when I look. Here is Amanda's Facebook book page link: Heart Warriors Facebook Page
The Giveaway will END at 10pm Saturday June 9th, 2012.
I will announce the winners on Sunday June 11, 2012.
Good Luck!! And get out there and spread the word about Amanda's Book,
Heart Warriors. Be sure to check out Amanda's Website about her book: Amanda's Website!!!