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


Sunday, May 16, 2010

Beauty...

I can hardly stand how beautiful the weather was this entire weekend. It was Gods grace and Gods love shining down in those beautifully warm rays of sunshine. We didn't do anything too exciting, projects around the home...I delved deeper into my love of all things gardening and created a little hide away for me to just sit and simply...be. I love it.
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It's not quite finished, I'm going to string some lights out there so I can sit there at dusk or whenever and just kinda be...this garden right now is my life. It's a sign of new life and new beginnings of course...it's a story of reusing what we already had within us...and it's a story of peace and hope and love. The border rocks are actually concrete my husband broke out of our walkway, the wooden planter box is built from extra fence boards by my husband because he knows how much I love to plant and garden. There are bird feeders and a bird bath so our kids can sit and watch them. And one of the plants that I have planted is called a bleeding heart. Because that is where I am these days...how fitting.
We love to be out in our backyard as a family, but the sun can be so piercingly hot for Conner, so I went and got a umbrella and a table so he can be outside in the shade with us with his O2 near by.
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But you'll see he's laying on the couch instead.
He didn't get off the couch much this weekend at all. His body is tired. Even on 4Liters of o2 he gets completely winded even walking to the bathroom from the couch not even 10 feet away. It's been a very difficult weekend. Emotionally. I just feel so robbed. I keep getting glimpes in my head of life without him in it. I'm terrified of that. absolutely terrified. I find myself unsure if it's morbid to figure out all of these decisions that will have to be made when he does leave us. I just know I'm going to be an absolute mess and the last thing we'd want to do is think about burial plots etc...but I don't want to waste time here and now doing it either. precious time with my son. I am stuck in between two worlds and neither one is completely appealing...life without my son in it or life with him suffering in it.
and that sucks.
As a mom I try my best to do each thing I possibly can for my children...and I've never been told that it's not enough. that it'll never be enough. that no matter how hard I try, I will not be able to fix the way he is broken. While I completely know it's not realistic...I feel a failure to him in that respect. I know it's a disease that I could've done nothing to prevent for him, and absolutely we've done all we can for his health...but we've failed still.
Conner has such a tender heart for his family, for his brothers especially. The day I shot the picture of him laying on the couch outside watching his brother play was Thursday while it was just him, me and Bradyn. Bradyn was playing in a little bit of water with some toys and Conner wanted me to take a picture of him with Grover because he said he just loved them so much, and that Bradyn was so cute...
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Snapping that picture for Conner so he could see it up close because he was too weak to get up was absolutely heart wrenching. This is just happening so fast...I mean I know it's not really... it could be months or whatever of this...but to me...just a few weeks ago he was walking most days oxygen free until bedtime...and now...he's on more o2 then he's ever needed constantly and he still doesn't have the energy to walk.
This is just surreal.
No other way to explain it. Like this is all a movie I'm watching. I'm just lost in all of this. Conner asked me to sleep with him last night, Brad has been for the past week or more each night, so I felt special it was my turn.
I don't think I slept much more than 4 or 5 hours tops. He was wimpering in his sleep. His breathing with the bipap was loud and forceful. But I did my best to just hold him as close to me as I possibly could and just breathe him in. Just be in that moment as long as I could. It was beautiful and difficult.
He's just so little. His my firstborn child. His body is so tiny and fragile now. He knows whats going on with his body changes but he won't talk to me about it yet. So i'll just keep trying. I need him to know this is ok. That when Jesus is ready for him, we'll be sad, but ok without him. I need him to know that if he's too tired to stay here, that he doesn't have to hold on just for us. For our pain. Because thats selfish of us. He hurts. We ache. Such a delicate balance. I need him to know over and over and over again how much we love him, how proud we are to be his parents, how from the moment of his conception, his father and I fought for him to live, to breathe, to exist, to laugh, to grow, to play, and to live the fullest life as possible. Who knew that could be accomplished in not even a decade of living...
I only hope that when I say to him that I'm going to be ok...that I really can be ok....

6 comments:

  1. Oh Sarah. I saw Brads status update on FB today, and after reading this, I'm just reduced to choking back tears. I haven't commented in a while, because I'm not sure what to tell you. I haven't been able to put into words, what I'm thinking.

    I can't imagine what you're going through, but I admire your strength. You may think you're weak, lost, or just barely existing, but I see a mom who's so strong, and knows exactly what she has to do, to handle this the best she can, and get her family through this difficult time.

    We're all here for you, and it's impossible to not be drawn in by your life & Conner's.

    Sending so much love & prayers,
    Chelsea

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  2. Thank you for continuing to share your journey with all of us.

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  3. As a mom, my heart breaks for you! I look for your updates daily to see how you all are doing. Praying for you all during this difficult time and hope you can find peace in God's grace. Love to you all.

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  4. I can only listen. I'm all out of words. I pray, I really do pray, that you will feel peace in spite of this nightmare.

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  5. sending you infinity hugs and all my Love! You are So very strong!!! Xo

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  6. Hey Sarah I wrote you once before and I sent you a picture of my daughter Elyse Hope who is 2 years old with CF to join the the book of those affected by this horrible disease. I am sure that you get many emails and letters a day from many people you don't know, but know you. I think of you often and have been following your blog for the past 3 months. Right now my heart just aches for you. You are so strong, the lives that you and Conner have touched are beyond the ability to count. I don't know what to say, but know that you are prayed for daily at night with my daughter we pray for you, your family and Conner. That God will just overwhelm you with Peace and love.
    Lastly,
    Thank you. Thank you for reminding me to stop, and take time to absorb life and all its beauty. To take in every moment we have with our children. They are so precious. You are a wonderful mother! Thank you for inspiring me daily.
    Love in Christ,
    Tara

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