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, April 26, 2010

GOING HOME!!!

Today is go home day for us....and we are very excited to do so. Over this past 8 days here we've met with each CF doc individually, both social workers, the nurse coordinator, child life, the chaplain and The Bridges hospice team. We feel secure in our right now plan, I'll call it. We'll continue the IVs for a week, bring him back to clinic and then decide then what the next step will be, and so on. I don't feel we're ready to make big, concrete hospice verses hospital decisions and I feel relieved to have finally realized that we don't need to yet. That nobody expects us to. That its perfectly ok to live in each day and when things progress, just go with the flow. I like that. So we'll meet the local hospice team and see what they're all about, and keep it in our mind, I crave flexibility. I don't feel comfortable yet saying home verses hospital. We're very connected to each one, for many different reasons. But I need to know it's ok to just have these conversations and over the next few weeks or hopefully months and MONTHS we'll just make each small decision as it becomes necessary...and it wont be as daunting as making one large decision right away. The Doernbecher CF team is extraordinary. They are compassionate. They are very loving and loyal. and most of all, they are heart broken over this as well. They are extended family by every sense of the word and to just walk away from them and not have them help see us thru every aspect of CF, the dyeing as well, is just unimaginable to me. You'd never probably understand that connection unless you've walked in it, which unfortunately many of you have, and I pray that more of you don't ever. But having intense doctors help and intervention since i was 18 weeks pregnant with Conner man and now 7 years later to just walk away from it all, is beyond my capabilities. They've been our miracle. These doctors saw me thru my pregnancy, they helped drain his little bladder when he was in my tummy struggeling desperately for life, they've seen him since he was brand new in the nicu and thru 26 different admits, thru his 105 degree fevers from the Zosyn, thru his rushed make a wish, and I simply can't live without them. and i'm so glad we don't have to.
So yes we are going home today from the hospital...not because he's well, but to just keep living each day and enjoy it and find the quality in each second until there is no more. and I think it's kinda wierdly beautiful. So he'll do another week of IV's then go to clinic and decide the next week and so on. and for now, that is the most perfect plan I can imagine. get out of here, and live our lives, fill his remaining time with experiences....fulfill his every wish and condense 60 years of living into whatever time remains. Such beauty i think. I think we'll all be better for it. Facing death forces you to live in the now and do each thing you can't make it thru your life without doing. and I'm excited to see where all we go...I do know though, that first stop is a visit and meeting with his best pal Grover here in Portland within the next week...Sesame is in town for some shows and Grover can't wait to meet Conner man. And from there...let the experiences roll..........
Love
Sarah

11 comments:

  1. Good to hear ya'll are going home. Home is such a wonderful place. I never realized how much I loved being at home until this last time my CF son was in the hospital. Driving back and forth from home to the hospital was agonizing. Because at home, I was away from my son, but at the hospital I was away from things I loved at home. It's so wonderful to have the whole family together at home, isn't it?

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  2. Great he is going home. Enjoy!!

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  3. blessings, blessings, and more blessings I bless upon you and yours!

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  4. I love your plan <3 You all remain in my prayers, and I can't wait to see what is in store for Conner, as he lives moment to moment...not worrying about what the future holds, right now.

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  5. I go to Doernbecher too, and I completely agree with everything you said about the team. They are amazing, and they will for sure see this through with you. My thoughts, prayers, and well wishes are with you. :)

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  6. Sarah,
    I think that this is the PERFECT decision. Enjoy every moment, every smile, every sweet hug.
    We will keep your family in prayer...
    Jada

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  7. I love the right now plan. And I love the sense of peace in your voice. You will be ok, no matter what.

    Home is wonderful. It's where you, and Conner should be for as long as you can be.

    I can't wait to read all of LIFE that your family will LIVE in these next months. If there are ways that we can help, please let us know!

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  8. I am so glad you are getting to go to your own home! That has to improve everyone's spirits (and get a little bit better nights sleep!) I have two kids with CF, and I admire you for sharing your story. I think with sharing and education we will get more support for CF... thanks!! Wendy Remington

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  9. Sending lots of love to you and your family. I don't pretend to know what you're going through, but as a mama to a little girl with CF, I know how precious each day is. It is a gift. Thank you for sharing your story. I hope these days at home are peaceful and joy-filled. Thinking of you. xoxo Elise

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  10. I am friends with Lisa Sakon, mom of Ethan Sakon. Your story makes me laugh, smile, laugh, smile, pray...and so many more emotions that I can't list. I have MS, Fibro, and I am a 10 year cancer survivor. No BIGGY. Seriously. When I think of my healthy son, I am reminded that there are angels like Conner. And you. My prayers are with you. Thank you (and Conner) for sharing your story and being such an inspiration.

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  11. My prayers are with you. Thank-you for sharing your story. Be strong and know you have the CF community sharing your pain and sending you loving thoughts.

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