My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Monday, December 14, 2009

Blog numero uno...the introduction


So here we are a new beginning. I have decided to cross over to the dark side so to speak...to blog. To have a space in my unraveling world where I am free to just be me, say what I wanna say, and at the same time be free to be honest. No holds barred...
I am a mother.
I am a wife.
a daughter, a sister, an auntie, a cousin, a granddaughter, a friend, a confidant, an organized OCD freak, who sometimes gets lost in the shuffle of life in the Jones house of boys! I have real honest emotions that attack me every chance they get. On any given day I am happy, fearful, sad, pissed off, hopefully optimistic, frightened, worried, ok maybe overly worried, but I somehow manage to hold it all in. Along with all of the above, I am also a full time nurse, full time stay home mom, full time respiratory therapist, full time medicine and appointment scheduler, full time boo-boo kisser and bandaid applier, full time researcher...phew...

I am a mother of a child with Cystic Fibrosis...

you can get caught up with my son's medical history at his caring bridge site at www.caringbridge.org/visit/connerreedjones for background on his story and our journey, but this site is my site of freedom. With this site I am allowing myself honesty. To cry when I need to cry. To scream when I need to scream. To vent when I need to vent. My son is very sick...and I need this for my sanity, not so much for people to read as it is for me a great way to journal my frustrations....get it out of my head so that maybe i can catch a few z's at night (HA!)

I am doing the best that I can juggeling all of this, but it has become apparent that in CF (cystic fibrosis) there is a lack of the big, dark, horrible TRUTH. Cf is a DEVASTATING, horrific disease with no cure. NO CURE. Life with it isnt always as "Bright and Shiny" as the CF foundation wants you to believe. I am on a quest for more information. Better, more honest answers. I will never give up hope that CF will one day be cured, and I will always fundraise towards a cure, but I pray that it will be soon enough for my son. Uhg. There it is...the very un-bright and un-shiny Cf that I live with everyday.

7 comments:

  1. Hi Sara, this sounds like very good stress relief for you. I use to journal all the time. I definitely understand why you need this. You have so much on your shoulders. I don't understand the CF world but I know enough about special needs that I do understand your stress, your worries, your pain, your sorrow, your tears. I understand. I know you are scared. I am scared alot of the time about Mason also. Every day we are fighting for our children's lives. Every day we have to worry and plan for a million things. Every minute of every day we have to worry, we can't relax or truly have fun. It's always in the back of our minds...what if. What if I missed something, what if I forgot something, what if..... It goes on and on. Sarah, please know I am here for you any time, day or night. I am always thinking about you. This is not easy and there are no easy answers. I know you will help find the cure for CF. You are determined, like I am. We take our pain and hurt and turn it into something good. This is why I need to help others through this special needs world. It helps me stay sane, or as sane as I can be. HUGS!!!

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  2. My dear precious friend,
    I am so glad that you decided to reight your thoughts raw, something that you can get your frustrations out on. A place where you can let it all out and not feel as though you have to sugar coat things for others and pretend as if it is all ok. Or that you have to hold your head up so high and say yes everything is just fine when really inside you are tearing up and falling apart. i am glad that you are letting some of it out vs bottling it all inside. I think that it will help you in many ways as the days go by.

    Whatever happened to the good ol' days where we just had to worry about us right?! Walking down to the lake, the mall, playing our violins, chilling with a good girly movie. We didn't have to worry as we do now. Sneaking to the movies and just good times!!!

    Now it's our kids. Except a different world, a different life than we expected. For you especially. There are so many like you, like us. For you it's every breathe you worry about. Me my daughter getting boobs, and body hair. I wonder if I taught her all that she need to know for the unknown world she is about to embark on.

    I love you so much and know that you are such a special mom. You are so couragious and giving. You are always happy and encouraging despite what the world throws your way. It is admirable in so many aspects.

    I ask God many times why? Why you? why conner? I don't have answers yet and may never get them til i get to see Him face to face. For now I continue to pray for each day to be full of moments, memories, and for life. I pray for the peace and the lives that are changed because of you, because of conner, your family and so much more.

    Hmm... I Prayed him into the world and know the day he was born where I was standing... dropping to my knees in tears of joy that this Miracle Baby Boy entered the world. I will not give up, I will not stop praying and asking God for His mercy and will to be done in your lives!

    I am honored to call you my friend and to have childhood memories as well as experiencing the opportunity to share in the lives of each other's children even though it is across the miles!

    Thank you for the privelage of knowing you and God is surely to bless you for all you are and all you do! Kiss my boy tonight. And may the Angels of Heaven touch you and wrap you in Love, may they help you fall asleep and when you wake have the peace of Jesus covering your entire being! I love you! can't wait to see you!

    "Georgia Girl" Brandy

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  3. Sarah
    I don't have much to say at this point. But you are always such a ray of sunshine whenever I hear from you. You are so entitled to the frustrations that CF bring. I too completely understand that. I know we will find a cure...brings tears to my eyes!
    Stay strong Sarah...you are such an awesome Mommy.
    Belinda

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  4. I have a place like this too.

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  5. Hi first let me say I'm so new to blogging, thank you for the reqest to join, I have really enjoyed reading your various blogs, I smiled, cried a little and thanked God for you. I'm just a woman who wants others to know about all the highs and lows involved in serving God. Thank you once again for sharing so much.

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  6. In the three hours it took me to read your entire blog I fell in love with Conner, your sweet brave boy. It is clear why God chose Conner for you, and you for him. He is in my heart now too and I will remember him. Blessings to you all.

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  7. Thank you! I am pretty much speechless after reading your blog. I am with you. I too am a stay at home wife and mother to three beautiful children. My middle child and only daughter has CF. We're fighting the fight with every fiber of our being every day. I can not express all the things I feel all the time but today I am grateful to you for your honesty and courage, God Bless!

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