DON'T BE AFRAID TO PRAY THE SCARY PRAYER
Before CHD (Congenital Heart Defect) invaded our lives I don't even think I knew what a Scary Prayer was. Since our CHD diagnosis I would be happy to help pray the Scary Prayer with you or for you. I promise the Scary Prayer is nothing to be afraid of.
Several months back on one of my social media sites I saw the post, "Don't be afraid to pray the scary prayer"
It was one of those moments when I read the post it stopped me dead in my tracks. The thoughts that rushed through my mind were Jackson and the three times I released him to a surgeon, Madelynn's entire heart journey, visiting with families who are waiting for a heart for their CHD warrior, making memory boxes for CHD warriors that have earned their wings, recent events of CHD warriors fighting for their lives and sometimes losing all in about 30 seconds.
Not every one's scary prayer is the same. Some of my scary prayers were hoping my sisters twins would survive premature birth, my son would not have any complications to his three surgeries, praying daily that Madelynn would be strong enough to win her CHD battle, praying some of our CHD Warriors don't earn their wings. I can assure you that not all of my scary prayers were answered.
The importance of scary prayers is praying them out loud. Hearing yourself say it out loud helps make it real and will help you cope. To this day certain words or phrases make me cry. The realization of where we were and how far we have come can be overwhelming; almost breathtaking. Today as I stand on the other side of our journey, I remember praying for help we would make it there.
Don't forget that not all Scary Prayers are answered. Sometimes the lack of an answer is the answer. This was one of the hardest concepts for me to accept. But it is also harder to help others understand it. I encourage you to never give up and don't let fear control whether you pray your scary prayer. I will never stop praying my scary prayers.
TTFN~
Thursday, January 21, 2016
Friday, December 4, 2015
Happy 12th Birthday Punkin!!!
She is a soccer player
She is a grand-daughter
She is a clarinet player
She is a daughter
She is big sister
She is basketball player
She is a niece
I love her freckles
I love her blue eyes
I love her long brown hair
I love her silliness
I love her sneakiness
I love her funkiness
I love her determination
Today my oldest turns 12
12 years of laughter
12 years of surprises
12 years of awe
12 years of happiness
12 years of tears
12 years of fighting
12 year I wouldn't trade for anything.
Happy Birthday Kaitlynn!!
I love you to the moon and back
She is a grand-daughter
She is a clarinet player
She is a daughter
She is big sister
She is basketball player
She is a niece
I love her freckles
I love her blue eyes
I love her long brown hair
I love her silliness
I love her sneakiness
I love her funkiness
I love her determination
Today my oldest turns 12
12 years of laughter
12 years of surprises
12 years of awe
12 years of happiness
12 years of tears
12 years of fighting
12 year I wouldn't trade for anything.
Happy Birthday Kaitlynn!!
I love you to the moon and back
Friday, October 30, 2015
Greater than I ever thought possible
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~
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~
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~
Friday, August 14, 2015
16 years........and counting........
Today Phil and I have been married for 16 years. We have been together for 18 years. It seems like forever. Some days I can barely remember life without him. Other days something stops me dead in my tracks and I remember everything about my life without him.
This month I have seen LOTS of friends posting wedding photos celebrating their anniversary. The perfect wedding day, wedding smile, the thinner her and toner him. Pictures that include parents, grandparents or that special family friend that helped make you who you are. Some of them gone but most of them just older and none of them ever forgotten.
But this life I made with Phil is not about the wedding day bliss. It is about the choice we made to love and cherish this life together no matter what...........
No matter what..........Did no matter what include waiting for me to finish college before we started a family? the craziness that includes step parents, step brothers and sisters, half brothers and sisters? Job loss? Economy crash? Fatal accidents? Burying someone way too soon? Birth defects? surrendering your children to surgeons 4 times? Three children under the age at 5?? The ultimate answer is yes!! All of this and more, our list would scare you into tears.
These are the things that have truly tested the vows we took and made us who we are today. Everyday life is hard. Sometimes we get really angry, sad or we need to cry. Sometimes the anger, sadness or tears came from the one we promised to love forever. Thankfully our parents and siblings who look a little older than they did 16 years ago have stood the test of time with us. Our glorious friends who have been there since the beginning or joined us along the way; we would not have been able to do this without you.
Right now we are in the thick of it. We have a middle-school-er, 5th grader and a 2nd grader. Life is going to get much more complicated before it gets simpler again. All three of them play soccer and our oldest made a Classic Travel team (an amazing feat for an 11 year old). Our son also plays basketball. We spend a record number of hours on the soccer field and basketball court. I know in the back of my mind one day I will miss all of this.
That wedding photos you see of us looking younger, thinner, and grinning from ear to ear was only the beginning. A photo of us smiling today means that we were able to shower, find a brush, clean clothes and threaten the kids to turn that best smile on just long enough for the camera shutter to capture it. It means we made it this far and we will Keep Moving Forward!
Pictures are just that one beautiful, ugly, scary or funny moment in life that we were able to capture the millisecond it occurred and nothing more. As we continue to live the vow we took 16 years ago, we will look past the milliseconds that have occurred and do our best to savor the moments to come. Today we send a heart felt thank you to those that have traveled this journey with us. For those that came along before this adventure began we thank you for preparing us to start the journey. We are so glad to have crossed paths with you along the way.
Most importantly to Pilbert.......When you think about how life started before we met most would have never believed we ever crossed paths. Thank you for melting on our wedding day so I could be married in the same church my parents were married in. Thank you for always holding me up every time we surrendered a child to a surgeon. Thank you on those really dark days we thought Madelynn might not make it for being my light. Thank you for always helping me find joy in the chaos. Thank you for always making me laugh even when I didn't want to.
Happy Anniversary!! I love you most!
TTFN~
Wednesday, July 29, 2015
When God provides the Clarity...........
Because of my experience with Madelynn's heart journey, I volunteer with Camp LUCK (www.CampLUCK.com)to help other families in crisis. It is not a pretty job but it is one I believe does the most good. I get to remind people they are not alone in their journey. I have no problem being the sounding board when they are angry. I love to share their joys of victory when an appointment went well or a surgery went better that expected. But I won't lie it is a very emotional ride. One I wholeheartedly agree to take every time I am matched with a family in need.
Recently, my work life and my volunteer Camp LUCK life have become a little blurry. Suddenly I receive calls from families reaching out to the church because they have a need. The Ronald McDonald house is full and they need a place too stay near the hospital. Their funds are low and they need a few things and they live more than 25 miles from the hospital. All of these things happen every day. When it's a heart family I try to offer emotional support since I have been there.
Most of time I can connect them with a community group that will help with that financial need. Most of the time I don't hear from them again. For what ever reason most of the time I am completely ok with that. I can look myself in the mirror everyday and know I gave it my all.
There are however those families who change your life FOREVER.
It doesn't seem right. I signed up to help them and they are changing me.
I found a letter I had written to a family. Their heart warrior was in bad shape, waiting for a transplant and really thought they needed to be planning a funeral. I started to cry when I left from visiting that family. The mother said I would cry with you but I have no more tears to cry. I can't imagine feeling so broken and disheartened that you can't cry anymore tears. It made me cry harder all the way home. I prayed for this family and asked God is this really the end for them it just seems so unfair. A few hours later the call came for a new heart and on Easter Sunday this warrior was given new life. A few months later I received a message of thanks and the mom said, "I know how to find you if I need you again".
My energy to continue helping these families was renewed. God really has a plan for them and me.
In March, a family needed help to stay at the Hospitality House near the hospital. At the recommendation of the Hospitality House the family called the church and I received the call. If you knew how difficult it was to actually reach me if you didn't know me at the church....almost impossible. (Yes I know it was God's plan).
It was a heart family who had exhausted all of their funds to stay in Charlotte near their very sick heart warrior. I was able to connect them with another community group that went above and beyond to keep this family together until the warrior succumb to her failing heart and died. I felt completely helpless unsure anything I said helped them. I left them with a few gifts from the church, a few kind words, a hug and a few tears.
In truth, I felt completely helpless, cried all the way home and hugged and Thanked God for my children when I got there. I have to force myself to just lift the family to God in hopes he will provide the right people and tools to help them grieve since they lived out of the area. The thought of going home empty still makes me cry.
As I shifted my focus to whatever else God had in store for me and I was engulfed in my own family chaos last week I received this text.
".....I haven't had a sincere way to Thank You but I am so grateful for your help. You helped me stay by my child's side and that means so much to me. I couldn't repay you if I could so I just wanted to say Thank You again. I can't say you were wrong either because I was not ok. I've never been so hurt in my life. I tried to be strong but it really does hurt. I saw that you were a very sincere person. I love that you are a Godly Woman. I've never seen someone care the way that you do. I have a lot of growing and changing to do in my life. I hope to have a heart as big as yours. Thanks again."
Just another reminder that it is ok that my volunteer life with Camp LUCK and my job at the church will get a little blurry and God will provide the clarity.
TTFN~
Recently, my work life and my volunteer Camp LUCK life have become a little blurry. Suddenly I receive calls from families reaching out to the church because they have a need. The Ronald McDonald house is full and they need a place too stay near the hospital. Their funds are low and they need a few things and they live more than 25 miles from the hospital. All of these things happen every day. When it's a heart family I try to offer emotional support since I have been there.
Most of time I can connect them with a community group that will help with that financial need. Most of the time I don't hear from them again. For what ever reason most of the time I am completely ok with that. I can look myself in the mirror everyday and know I gave it my all.
There are however those families who change your life FOREVER.
It doesn't seem right. I signed up to help them and they are changing me.
I found a letter I had written to a family. Their heart warrior was in bad shape, waiting for a transplant and really thought they needed to be planning a funeral. I started to cry when I left from visiting that family. The mother said I would cry with you but I have no more tears to cry. I can't imagine feeling so broken and disheartened that you can't cry anymore tears. It made me cry harder all the way home. I prayed for this family and asked God is this really the end for them it just seems so unfair. A few hours later the call came for a new heart and on Easter Sunday this warrior was given new life. A few months later I received a message of thanks and the mom said, "I know how to find you if I need you again".
My energy to continue helping these families was renewed. God really has a plan for them and me.
In March, a family needed help to stay at the Hospitality House near the hospital. At the recommendation of the Hospitality House the family called the church and I received the call. If you knew how difficult it was to actually reach me if you didn't know me at the church....almost impossible. (Yes I know it was God's plan).
It was a heart family who had exhausted all of their funds to stay in Charlotte near their very sick heart warrior. I was able to connect them with another community group that went above and beyond to keep this family together until the warrior succumb to her failing heart and died. I felt completely helpless unsure anything I said helped them. I left them with a few gifts from the church, a few kind words, a hug and a few tears.
In truth, I felt completely helpless, cried all the way home and hugged and Thanked God for my children when I got there. I have to force myself to just lift the family to God in hopes he will provide the right people and tools to help them grieve since they lived out of the area. The thought of going home empty still makes me cry.
As I shifted my focus to whatever else God had in store for me and I was engulfed in my own family chaos last week I received this text.
".....I haven't had a sincere way to Thank You but I am so grateful for your help. You helped me stay by my child's side and that means so much to me. I couldn't repay you if I could so I just wanted to say Thank You again. I can't say you were wrong either because I was not ok. I've never been so hurt in my life. I tried to be strong but it really does hurt. I saw that you were a very sincere person. I love that you are a Godly Woman. I've never seen someone care the way that you do. I have a lot of growing and changing to do in my life. I hope to have a heart as big as yours. Thanks again."
Just another reminder that it is ok that my volunteer life with Camp LUCK and my job at the church will get a little blurry and God will provide the clarity.
TTFN~
Monday, July 20, 2015
Happy 10th Birthday Jackson!!
Today Jackson enters in the double digits never to return to single digits again. I could be sad and some days I am sure I will be. But today I am very excited for his new adventures to begin. I can't wait to see what this world has in store for him.
HAPPY 10th BIRTHDAY JACKSON!!
Love you to the moon and back!!
Mama
**Due to copyrighting I could not use Verge by Owl City so I chose the song in this video. It was not Jackson's favorite but he said it will do. I on the other hand was totally bummed.**
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