Seven years ago this morning I was anxiously awaiting for Phil, his mom, his sister and my parents to arrive. They needed to hurry up it was almost time. I was close to falling apart and no one was here yet. When the medical staff came into Madelynn's hospital room to wheel her down for open heart surgery, still no one. When I thought I was at my breaking point, the cavalry arrived. I was not going to be alone when I surrendered my child to the surgeons. Everyone who promised they would be there, was there, they all kept their promise.
Promise is a dangerous word and should not be taken lightly in an capacity. There are very few things that can be promised and kept forever. As we have traveled this heart journey with Madelynn, I have had to break promises because I tried to live life like before her diagnosis. I could no longer do that. I was learning the hard way......we were a heart family and we needed to find the new normal. I also learned that it is not impossible but you need to be open and accepting to your new life.
I can promise you that seeing your child right after open surgery is NOTHING like you thought it would be. When I meet a new family and they are facing surgery in the immediate future I always ask what has the doctor told you about after surgery. I was not prepared for what my child would look like after surgery. My best description is stunned silence. Thankfully the nurse caring for Madelynn knew that deer in the headlights look and went into action. She just took the steering wheel and lead us into our journey and explained EVERYTHING.
Realizing that not everyone will have a stellar nurse like we did, I can only remind you to ask questions and LOTS of them. If you don't know, ask. Don't be afraid to ask the same question more than once. Because you are in a form of shock make notes to ask questions later. If I have learned anything in this journey it is to ask questions and take charge of your child. Who will fight for them if you don't? I feel all heart parents (ok all parents) should feel empowered to fight for their child. If you won't fight for them who will? It was not an easy journey. I watched Madelynn fight for her life everyday. She never gave up so why should I.
Sadly while I was fighting for her I lost friends. They do not understand your journey and sometimes are too afraid to take it with you. People I really thought were my friends disappeared and never returned. However, you all know after the rains there is always sunshine and the promise of a new day. For me it was new friends. Obviously I would have never made these new friends with out this horrible experience. But I would never trade them back.
They understand nerves before a heart doctor visit, tears when today was not what we thought, and the urge to vomit when you hand your child to a surgeon knowing they might not survive. They understand some days you will find each other on facebook at 2 am because worrying is keeping you up. There are things you don't need to speak about because it is just understood and accepted for face value any day of the week and twice on Sunday.
I really thought I had life together before this journey. God had other plans and gave me Madelynn with all of her surprises. I would have never chosen this life, EVER. But I am here, I am living it and I am so lucky for Phil, my children, this crazy journey, my heart family friends and all that life has in store. What I can promise you today is that there is life after a CHD diagnosis. Maybe not the one you thought but it can be GREATER than you ever thought possible if you embrace it and live IN every moment.
Happy Heart Day Madelynn!! I love you to the moon and back!! Thank you for making my life greater than I ever thought possible.
Love, Mama
TTFN~
Friday, October 30, 2015
Thursday, October 29, 2015
The day when life changed forever
Sometime after 2 pm October 29, 2008 Phil and I were being told that our beautiful 10 week old daughter had a broken heart. I can only imagine it is like being hit with a flash grenade. Suddenly the world stops, you lose all your bearings, you are forced to immediately regroup and figure out how to survive.
But we didn't just survive, WE THRIVED!! Most importantly we did not do it alone. The doctors for what seamed like hours educated us about what it meant to be a heart family. Madelynn would have Open Heart Surgery the next morning and we were trying to process it all. When I hear about a newly diagnosed family, the flashbacks of my own journey take a front seat for a few days. When the opportunity arises I always want to help a new diagnosed family. I want them to know there is life after a CHD diagnosis and they are not alone.
We were lucky enough to have family especially my dad. As soon as he could he came to the hospital. He asked a lot of questions from me after we talked to the team who would ultimately save Madelynn's life. To be honest it was the best thing he could have done. For me to share and repeat the things the doctors had just told us helped me manage what was happening. He would ask me questions I should have asked Madelynn's medical staff. It truly helped understand, build my own list of questions to further understand what was about to happen. This is always one of the tips or things I offer to help families with. Do they understand what is happening? What don't they understand? I am no medical expert but thanks to my dad I have learned how to help ask questions or create a list for the medical experts to solve.
Although medical experts solved a lot of issues and family helped process it, a best friend just makes the world better. Seven years ago this evening my best friend called from Florida and we talked until my phone died, I plugged it up and we talked some more. I know we talked about Madelynn's upcoming journey. Since she is a nurse she helped me understand some of the things I was going to ask the doctor. Most of all she was just there. She is the one person for almost 30 years that always makes my world right again. She is just a special kind of wonderful that I am truly lucky to call her friend. In about three weeks my world will be right again because I will be engulfed in one of her hugs, humor and family.
A CHD diagnosis is terrifying, something I would never wish on even my worst enemy but is is survivable and life does go on. It might not turn out like you envision but it worth every tear, tense moment, horrible day and ounce of fear you carry in your soul. My life changed forever October 29, 2008 but is was all part of the plan and I am a better person because of it.
I love my heart warrior with every ounce of my being and am truly grateful for the journey. Love you Peanut!!
TTFN~
But we didn't just survive, WE THRIVED!! Most importantly we did not do it alone. The doctors for what seamed like hours educated us about what it meant to be a heart family. Madelynn would have Open Heart Surgery the next morning and we were trying to process it all. When I hear about a newly diagnosed family, the flashbacks of my own journey take a front seat for a few days. When the opportunity arises I always want to help a new diagnosed family. I want them to know there is life after a CHD diagnosis and they are not alone.
We were lucky enough to have family especially my dad. As soon as he could he came to the hospital. He asked a lot of questions from me after we talked to the team who would ultimately save Madelynn's life. To be honest it was the best thing he could have done. For me to share and repeat the things the doctors had just told us helped me manage what was happening. He would ask me questions I should have asked Madelynn's medical staff. It truly helped understand, build my own list of questions to further understand what was about to happen. This is always one of the tips or things I offer to help families with. Do they understand what is happening? What don't they understand? I am no medical expert but thanks to my dad I have learned how to help ask questions or create a list for the medical experts to solve.
Although medical experts solved a lot of issues and family helped process it, a best friend just makes the world better. Seven years ago this evening my best friend called from Florida and we talked until my phone died, I plugged it up and we talked some more. I know we talked about Madelynn's upcoming journey. Since she is a nurse she helped me understand some of the things I was going to ask the doctor. Most of all she was just there. She is the one person for almost 30 years that always makes my world right again. She is just a special kind of wonderful that I am truly lucky to call her friend. In about three weeks my world will be right again because I will be engulfed in one of her hugs, humor and family.
A CHD diagnosis is terrifying, something I would never wish on even my worst enemy but is is survivable and life does go on. It might not turn out like you envision but it worth every tear, tense moment, horrible day and ounce of fear you carry in your soul. My life changed forever October 29, 2008 but is was all part of the plan and I am a better person because of it.
I love my heart warrior with every ounce of my being and am truly grateful for the journey. Love you Peanut!!
TTFN~
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