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

Thursday, February 17, 2011

I’m simply trying…



He’s been gone nearly 8 months already.

it’s shocking how fast it’s gone, yet how it feels like it’s been forever since I’ve seen him.

I’m surprised how long its taken me to accept that so much of my life has or is in the process of changing. I have to roll with it all or it’ll roll right over me. I’m still shocked by how many days I am paralyzed in grief. seeing his face in pictures or even saying his name how it fills my heart with pain. and how some days it’s the exact opposite. it’s crazy how different I look, feel, and act than I did 8 months ago. how different my priorities are. but the pain…that hasn’t changed.

in the beginning, after the shock wore off the pain was intense and crippling all day long and my only escape was when I was sleeping. and now I still have those days of intense grief, probably two days a week, but I’ve learned to roll with it. it’s become the new “normal”, and between those days of intensity there is a constant underlying sadness that fills my heart, it’s always there. I’ve had to take a step back from CF. I’ve had to start being around people who don’t speak CF speak all day long. because it’s a huge trigger right now. I’m still staying up to date with those that I love, and yes naturally talking about CF is a natural part of the discussion….but I can’t just engage in CF conversation for no reason. Because I miss it. I haven’t mixed or prepared one CF nebulizer or treatment in 8 months. I haven’t heard the humming of the 02 concentrater, or hooked IV’s up, or held Conners hand while he was getting “pokies”…that life is dead to me, and it represents the loss of conner. and it’s hard to take.

I’m able to find so much happiness and love in the normal life that so many take for granted. I have two beautiful, healthy, vibrant children. there lives don’t revolve around clinic visits, medications and a constant struggle to breathe. how blessed are they? how blessed are we? Yet, this is a life that I’m not able to really grow accustomed to. I was created for more. I lived and breathed the fight for 7 years and my spirit is missing that determination. being a mom to two healthy children is a harsh, drastic change. how easy life is now in that respect. I love that my kids are healthy, don’t misunderstand, it’s just so amazingly different than life with a very sick little one. if my purpose revolved around fighting for Conner, and now he’s gone…I have to now look for my new purpose…my new fight.

Which is my family’s freedom.

we’d been forced into a life of income restrictions, limits, that was run by constant money issues. too much money in, and we risked losing Conners insurance. yet his illness was the reason for our penalties. which isn’t fair. we had to play that game for 7 years and now we determine our income. theres no limits placed on our lives any longer. we can truly reach for the stars and our highest potential and nobody is keeping track. in that respect its fantastic. yet in the back of my mind it represents a new life, moving forward, without conner…Im stuck wondering which is better? I know Conners up living the most amazing life imaginable, free of bondage and medications and constant restrictions, and he’s passing blessing onto our family…I just wish I could hug him again. I’m impatient.

the greatest growth stems from the greatest pain, and I’ve grown so much already that I simply cant fathom what else God has in store for our family. I have learned that there are many toxic things in this world and to get as far away from it all as possible. it can be jobs, people, relationships, situations, you name it. it is life draining. learning that gave me freedom. I’ve learned the definition of a true friend. and sometimes it comes from the least expected place you can imagine. so pay attention to those acquaintences that seem to pop in and out of your life just when you need them to, in a pinch you’d be surprised how much they rise to the occasion WITH and FOR you, where some you consider the closest to you draw FURTHER away. watching for those people who love me in the midst of all of this has brought me freedom.

it’s just hard to believe it’s been almost 8 months since that day he left us. we’re nearing what would be his 8th birthday in a few months and its just devestating to think back to where we were last year, how much we did for his 7th and final birthday on earth, and now how I’d give anything to throw him an 8th birthday. I’m trying so hard to be the best mother I can for these beautiful boys god has left in my care, and I can only hope that they see more smiles than tears, more laughter than sadness and more joy than sorrow. all I know is I’m trying…desperately…I’m trying.



Love Love Love



  1. Sarah,

    I am a Mom to Ethan, my only child, age 12 living with CF. I have followed your blog a long time and have never posted.

    I probably could write a 'ton' to you, but I simply want to state that your story has blessed me. Today is 'one of those CF days' but I can still be thankful.

    Thank you for being transparent in your sharing.
    Although I can not always understand God's ways...I will trust Him.

    Sarah Vander Molen (one of your fb friends)

  2. Sarah,

    I am a Mother of three boys also. One struggles with ADHD. I have a 7 yr. old that turns 8 in April. Your story has really touched me deeply. Thank you for your vulnerability and sharing to help other people. Hearing your story really puts life in perspective for me. I am one of your friends on FB and love to watch your daily posts. You amaze me. You are REAL! I know that God has HUGE blessings in store for you and your family. The more turbulent the storm, the bigger the rainbow. He is going to be using you for his greater GOOD. I thank him for you in my life. I'm am so forunate to have found you. You have changed my whole way of thinking and doing things. Keep sharing beacause we really are being changed by your vulnerablility. May God shine his light on you.

    Natalie Bay

  3. Sarah,
    Keep it up, you are succeeding.


  4. Sarah,
    Your boys know and will know that you are doing your best to be the best mother for them. They will know of your love for Conner, and for them. That will stay with them.

    Despite the pain, they will know more joy then sorrow. Memories and stories of Conner will become great blessings.

    Losing a sibling does affect your heart, but hearts are amazing.

    Cherish those memories.

  5. Sarah,

    I have CF. And people are always telling me how strong I am. But when I read your blog, Thats true strength. While I don't know you personally, I offer you my ear, anytime. I can't imagine what you are going through. But I wish you and your family the very best. I hope you know that you are very inspirational. Keep smiling, judging by your pictures, its a beautiful smile. :)


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