Hey everyone, this is the rough draft of the the first chapter of Kylie Half Hearted Hero.  I give it to you to look over and I wonder what you make of it.  Also, please be praying that God blesses this and makes something useful out of it.



What is it like having a child with CHD
It is Lasix, aspirin, duril...It's wondering...Lord what's your will?.... It's monitors and oxygen tanks...It's a constant reminder...to always give thanks...It's feeding tube, calories, needed weight gain...It's the drama of eating...and yes it's insane! It is the first time I held her...(I'd waited so long) It's knowing that I need...to help her grow strong...It's making a hospital... home for a while...It's seeing my reward...in every smile. It's checking her sats...as the feeding pump's beeping...It's knowing that there...is just no time for sleeping...It's caths, x-rays and boo-boos to kiss...It's normalcy...I sometimes miss...It's asking...do her nails look blue? It's cringing inside...at what she's been through. It's dozens of call to the pediatrician...(He knows me by name...I'm a mom on a mission) It's winters homebound...and hand sanitizer...It's knowing this journey...has made me much wiser. It's watching her sleeping...her breathing is steady...It's surgery day and I’ll never be ready. It's handing her over...(I'm still not prepared...) it's knowing her heart...must be repaired...It's waiting for news...on that long stressful day...It's..praying...It's hoping...that she will be okay. It's the wonderful friends...with whom I have connected...It's the bond that we share ...It was so unexpected.....It's the long faded scar....down my child's small chest...It's touching it gently...and knowing we are blessed...It's watching her chasing... a small butterfly...It's the moment I realized....I've stopped asking...why? It's the snowflakes that fall...on a cold winter's day.... (They remind me of those...who aren't with us today) It’s a brave little girl...who has been through so much pain....it's a special heart bear...or a frog in the rain...It's the need to remember ...we are all in this plight...It's their lives that remind us...we still need to fight! It's in pushing ahead amidst every sorrow....It is finding the strength to have hope for tomorrow. -Author Unknown
                At the risk of sounding cliché, it WAS a dark and stormy night, both outside our room at the Ronald McDonald House in Ann Arbor, Michigan but also in my spirit and in my heart.  This night, my mind was so overwhelmed with the happenings of the last 48 hours, that I couldn’t sleep on a bed that wasn’t mine,  in this room that didn’t belong to me, and in a place that I had never really been in.  As my wife slept beside me, I sat on the edge of the bed and watched as the big white flakes of snow covered the hospital campus and dealt with the big black flakes of confusion, insecurity, and fear blanketed my heart.  My newborn  daughter, my flesh and blood, and my two  day old charge that was my responsibility to protect, wasn’t where she should have been , she wasn’t right here.  She wasn’t sleep in this strange room with us, where I could watch over and where I could protect her.  She wasn’t even in the same house.  She was fifteen minutes away in one of the biggest hospitals I had ever seen, University of Michigan Hospital.  Instead of being in our bed or in a crib next to us, she was in a hospital bed up on the fifth floor in a special unit for children just like her.   She is lying there with a tube down her throat, to help her breathe, because her lungs weren’t well enough to support her.  Lying there with wires and tubes all over her weak little and jaundice little body, pumping medicine and support into her.  Even though she, and all the little ones like her, was born fighters she just wasn’t strong enough to win this battle without some help.  My child, who I have yet, to hold and who I won’t be able to hold for another three days fights and sleeps as peacefully, as one can in her position.
                So, here I sit, with my daughter there and my wife, who had just given birth two days ago, here.  The family that I had been tasked to defend, protect and provide for, were not only not together, but both were in need of care and attention.  Here I sit, in the darkroom, staring at the cold and white ice falling towards the ground, wrestling with the ice that grips me.  Here I sit wrestling with the coldness of uncertainty and fear of the questions that fill my head:
                What is going to happen?
                Is she going to make it?
                How did we get here?
                Am I up for this?  I am just a kid myself?
These and other questions swirl around my head like the snow swirling outside in the cold night air.  Sighing, I lie down beside my wife and hold her close.  I am not sure where we are going from here and have no idea what the future may hold.  I am amazed at where we have been, though, and I know two things for sure.  As I drift off to sleep, I make this silent promise to my family.  I, by the grace of God above, was going to help support my family through all of this and that my life, as I knew it, would never be the same.
                Hi, my name is Ron and I am the, lucky father of a miracle,  A miracle, in the form a two and a half year congenital heart special needs little girl named Kylie. I write this book to share my family’s story with parents, new and old, alike.  Maybe you are a parent of special needs little one and can relate to some of my journey.  If that is the case, then we can gain strength from each other.  Maybe you have just found out that you are going to be the parent of a special needs child.  I understand the loneliness, the stress, the anger, the frustration, the sadness, the joy and happiness, and just the overwhelming flood of emotions that you are experiencing.  I write this to show that you are not alone on this journey, that others have walked it before, are walking it now, and want to walk it with you.  I offer this as guide to you, to see what we have gone through and to experience what we have experienced.  It is my hope and prayer that you get some ideas, inspiration, strength, relief and (hopefully) a few laughs from me and my quirkiness.  Also, for all families, I hope that we all get a renewed appreciation for the joy and blessings that are all of our children.
                 There are two other things that might be nice to know about me.  First, I write this as my daughter is in the hospital in Ann Arbor for what I believe is our tenth stay.  We are in the hospital for fluid build-up, rhythm issues and a probable pacemaker.  We visit hospitals like most people visit amusement parks, we pack and anticipate.  We have been in Cleveland Clinic, St. Vincent’s in Toledo, and U of M in Ann Arbor, with visits ranging from the span of days to two months.  We have had too many doctor, therapies, and appointments to count.  This has become as much a part of our lives as feedings and diapers have been.
                Secondenly, I am what Webster defines as a “person who behaves awkwardly around other people and usually has unstylish hair, clothing, etc.  This type of person also goes by the wonderful label of DORK!   I have tried to reform, I have tried to be better but always slip back to my old self, so I have now resigned myself to the fact and truly enjoy it.  I have an interesting sense of humor, am slightly old fashioned, and almost everything I do, I do with the best of intentions.
                I thank you for taking an interest in family and our experiences.  I hope that you are able to relate to some of our experiences, laugh at a lot of them, and that you are able to take away something that you can use in your own life.  So without further ado, I welcome you to meet my little one, Kylie, my half hearted hero.