Our lives have changed drastically over the last few weeks. Greg sent me a text one day and says he feels bad b/c the girls don't get to have normal lives...
That led this mother on a crazy journey with the girls. I waited for them to wake up and I ask them: Do you girls want to go back to school? Trinity said I do momma and Pyper said I want friends. So what does that leave this mother to do? It left me to get them ready and get them registered back in public school.
My heart broke but it also made me realize my girls are more than fighters, they are two of the sweetest, most loving, little girls who both have the biggest personalities ever. They are more social than most kids who have been thrown into daycare from day one. They are the light of my life.
I found me a prn job and my life has changed. I hate it. I don't lie. I just want to be the one who picks my girls up from school, and who sees them wave and smile when they see me waiting in line. I want to be that person. I want to be there for my girls. I am their mother. I am their biggest fan. I am complete with them. I have cried more in the last month, than I think I have ever cried. I miss them. I miss us.. I miss our times being together all day long. I miss my life. Greg keeps saying: I didn't tell you to go back to work. No he didn't but with medicine cost going up everytime I order, then what does that leave me to do? WORK!!!!!!!!
I want my life back, I want my heart back, I want it all but can't have it all. I want to be a mom. That is what I want.
Two weeks into school and Pyper is wheezing like crazy, Trinity has a cough, and greg keeps laughing at me b/c he knows he didn't tell me to go to work. I just want to break.. Break down b/c I need to work, break down b/c I want to be home, break down just b/c I need it. lol.
So the girls are loving school, and I am losing my damn mind. I am lost. I am not lazy but god knows my heart is with my girls. I want to be close incase they need me, I want to be just a minute away to get to them quick, I want to be there for football games, lunches, and just be there for whatever they need. I want to be a mom. Hello my name is Martie and I am a mom. Nothing more, nothing less... I am a mom who loves her girls more than anything. A mom who wants to watch them grow and a mom who wants to love them more than life itself. A MOM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I AM ONE MOTHER FIGHTING TO SAVE HER BABY GIRLS, FIGHTING FOR THEM TO BE ABLE TO BREATHE EASY. I HAVE TWO DAUGHTERS BOTH WITH CYSTIC FIBROSIS, AND THEY ARE MY WORLD. THIS IS MY JOURNEY WITH MY GIRLS AND OUR JOURNEY WITH CYSTIC FIBROSIS.
ME AND MY GIRLS
THE LOVES OF MY LIFE
Thursday, September 11, 2014
Monday, March 10, 2014
where are you at
Where are you god??????
Today has been one of those days were I feel I am fighting a battle I can't win. That battle is CYSTIC FIBROSIS......... For the last 2 years, I have given everything I have to protect my girls and still their lung functions are low, and poor pyper is fighting battles I don't think, anyone should have to fight. Sometimes in life I have battles. I fight those battles and try to keep them to myself and then sometimes those battles win and I cry and cry. Yesterday was one of those days. One of those days were I just wanted god to tell me everything was going to be ok. One of those days were I hugged my husband and I said I am fighting a BATTLE I can't win... Is Cystic Fibrosis going to win? Is Cystic Fibrosis going to beat me? If anyone knows the real me, they know I am a beast, a fighter, a person who want let someone hurt her, or run over her, or lie on her or hurt her children or husband. I am a fighter b/c that is all I have ever known. I fight for our family, I fight for us, I fight CYSTIC FIBROSIS each and everyday with everything I have in me. I fight it... Cystic Fibrosis is a ufc fight, a fight with mike Tyson, a fight with a mean bully at school. Cystic Fibrosis is that one person u want to beat the shit out of but can't get your hands on them. Cystic Fibrosis is my enemy. My fear... The one and only thing that I think can take me down. Take me down with my girls.
Fear is awful and not knowing the future is worse. Is there a cure? Is there a better way to win cystic fibrosis? Is there a medicine on the way to make my girls life easier? IS THERE????????????????
Fear eats me alive everyday. I continue to smile, and no one other than my husband sees my fear. He knows b/c he can read it on my face. He sees through me like no other. He sees my battles, he sees my fear, and he sees that on one side I feel I am doing the right thing by protecting them until a medicine comes and on the other I feel I am letting them down and keeping them from great times and being around someone with a cold or runny nose who is a friend they just want to see. FEAR is just as bad and CF.......
Love is the best. I love my girls with everything I have in me. I love them more than I love myself.. I love them more than god.. That is another battle that I hope god understands. I love them more than anything on earth. I just want to protect them and keep them from evil. That evil being cystic fibrosis, and diabetes, and neuropathy, and feeding tubes, and asthma. That evil being so mean and cruel. Love gets me through so much. I look at them and I see two healthy beautiful little girls who are growing up quickly. I look at them and I see love. I see my heart, and I see my life.... Love is not cruel. Love is beautiful.. Love is what keeps me going everyday even when I feel like I am losing. LOVE!!!!!!!!!
So this is my question: where are you at GOD????? where are you when I need you and my girls need you and my husband needs you? Where are you at? I feel the devil everyday try to take me but I don't feel you. Are you there? Are you with us? are you by my side through all this stuff? are you with me? Are you protecting my girls? Are you going to keep them safe, and healthy? Do you have my back? I know the answers to these questions but sometimes I feel you left us.. I know you seen us through some terrible times, and seen my girls through some awful times. I know you are there.. I have scares and fears that I ask you a lot to protect us through. Are you there? I feel there are times that I know you heard me. Like a simple request the day a friend died, I felt you by the crazy birds I ask for at her funeral. Am I the only one that saw them? am I the only one who heard them? I ask for clarification that she was in heaven b/c she went so quick I wasn't sure she had time to ask god to be with her.. I felt you the day of my grandfathers passing, I felt peace with him. Those feelings are crazy. I felt you when trinity was in the hospital with some of the worst bacteria's and you showed me a sign by the room number which happened to be our anniversary. You showed me family. So I do know that you are beside me through everything but there are times I feel alone. Show me your glory?. Show me that I am making the right decisions? Show my girls that you are with them and never going to forsake them? Show me that my girls are going to be ok? SHOW ME!!!!!!!!!!!!!!!!
Today has been one of those days were I feel I am fighting a battle I can't win. That battle is CYSTIC FIBROSIS......... For the last 2 years, I have given everything I have to protect my girls and still their lung functions are low, and poor pyper is fighting battles I don't think, anyone should have to fight. Sometimes in life I have battles. I fight those battles and try to keep them to myself and then sometimes those battles win and I cry and cry. Yesterday was one of those days. One of those days were I just wanted god to tell me everything was going to be ok. One of those days were I hugged my husband and I said I am fighting a BATTLE I can't win... Is Cystic Fibrosis going to win? Is Cystic Fibrosis going to beat me? If anyone knows the real me, they know I am a beast, a fighter, a person who want let someone hurt her, or run over her, or lie on her or hurt her children or husband. I am a fighter b/c that is all I have ever known. I fight for our family, I fight for us, I fight CYSTIC FIBROSIS each and everyday with everything I have in me. I fight it... Cystic Fibrosis is a ufc fight, a fight with mike Tyson, a fight with a mean bully at school. Cystic Fibrosis is that one person u want to beat the shit out of but can't get your hands on them. Cystic Fibrosis is my enemy. My fear... The one and only thing that I think can take me down. Take me down with my girls.
Fear is awful and not knowing the future is worse. Is there a cure? Is there a better way to win cystic fibrosis? Is there a medicine on the way to make my girls life easier? IS THERE????????????????
Fear eats me alive everyday. I continue to smile, and no one other than my husband sees my fear. He knows b/c he can read it on my face. He sees through me like no other. He sees my battles, he sees my fear, and he sees that on one side I feel I am doing the right thing by protecting them until a medicine comes and on the other I feel I am letting them down and keeping them from great times and being around someone with a cold or runny nose who is a friend they just want to see. FEAR is just as bad and CF.......
Love is the best. I love my girls with everything I have in me. I love them more than I love myself.. I love them more than god.. That is another battle that I hope god understands. I love them more than anything on earth. I just want to protect them and keep them from evil. That evil being cystic fibrosis, and diabetes, and neuropathy, and feeding tubes, and asthma. That evil being so mean and cruel. Love gets me through so much. I look at them and I see two healthy beautiful little girls who are growing up quickly. I look at them and I see love. I see my heart, and I see my life.... Love is not cruel. Love is beautiful.. Love is what keeps me going everyday even when I feel like I am losing. LOVE!!!!!!!!!
So this is my question: where are you at GOD????? where are you when I need you and my girls need you and my husband needs you? Where are you at? I feel the devil everyday try to take me but I don't feel you. Are you there? Are you with us? are you by my side through all this stuff? are you with me? Are you protecting my girls? Are you going to keep them safe, and healthy? Do you have my back? I know the answers to these questions but sometimes I feel you left us.. I know you seen us through some terrible times, and seen my girls through some awful times. I know you are there.. I have scares and fears that I ask you a lot to protect us through. Are you there? I feel there are times that I know you heard me. Like a simple request the day a friend died, I felt you by the crazy birds I ask for at her funeral. Am I the only one that saw them? am I the only one who heard them? I ask for clarification that she was in heaven b/c she went so quick I wasn't sure she had time to ask god to be with her.. I felt you the day of my grandfathers passing, I felt peace with him. Those feelings are crazy. I felt you when trinity was in the hospital with some of the worst bacteria's and you showed me a sign by the room number which happened to be our anniversary. You showed me family. So I do know that you are beside me through everything but there are times I feel alone. Show me your glory?. Show me that I am making the right decisions? Show my girls that you are with them and never going to forsake them? Show me that my girls are going to be ok? SHOW ME!!!!!!!!!!!!!!!!
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