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, April 8, 2010

So much change in such short amount of time!


Gosh it's been awhile. I can't remember exactly how long but long enough. Life has just been kinda flowing, trying to navigate spring break, cf clinic, iv's, meetings, fighting over cayston, tutoring, the zoo, easter, and family birthdays...(with two more to come in the next few days, but I won't say WHOSE...more on that later) In addition to all of that we got a puppy!!!! And he couldn't have arrived at a better time. Such a great thing for those batteling their health and looking for a great distraction and even a feeling of satisfaction having ONE thing they can truly control. Conner's in heaven. We bought a tiny shih poo pup that doesn't get bigger than 9 pounds, even though I would love a lab (we've always had labs) but I knew I didn't have the time or space to give a lab the home it deserves....so teeny pup works perfectly! Conner named him Grover (his favorite stuffed animal since he was 1 day old! not to mention his dear hospital buddy!) Grover has been a much needed source of unconditional joy and love our family has so desperately needed...


Conner went to clinic on Tuesday and we decided to end his IV's. We know that he doesn't do well without IV's but he needs a break...and goodness i need a break as well. So because he's still sick, and of course always will be...we put him on a two week dose of oral antibiotic and 5 days of prednisone to maybe perk up his lungs. I think the Doc wrote those scripts just to make me feel better...but oh well. I'm just glad to have a little bit of time off. We go back to clinic in two tuesdays from now. And I'm still waiting on cayston...insurance is having a hay-day denying it, but i'm hopeful that it'll arrive soon.


I've been given a few great doctors names and have been contacting them to see what more if anything can be done for Conner, and to get information about compassionate care releases etc. One doc who came highly recommended in Denver called me back the other day and gave me his personal cell phone number to call "anytime" to talk about our situation and what he might be able to help with. Now I just need to put my ducks in a row and figure out just what i want to say and then call him back! it never hurts to try...


This weekend marks the big 3-0 for me...oh joy and then this next wednesday my sweet Conner celebrates his 7th birthday....and that fills my heart with such happiness...to think i was worried if we'd even make it to here...and we almost are!!! I pray as well that this is not his last birthday, but just incase it is we're going to make it EXTRA special for him! Bring his make a wish back to life!!!! Hawaiian luau complete with a volcano cake!


Ive called his teacher today and we've made arrangements for Conner to go to school for half days each wednesday to be with his friends...and wednesdays are the fun days...two recesses, lunch, music, math and computer lab!!!! oh yes and library!!! And this coming wednesday is his first day (if he's well enough) and it couldn't be more perfect...it's his birthday!!!


So for now our lives are flowing...nicely. No drama...no iv's...yes on orals but sheesh that's easy-peesy! and hopefully we'll stay out of the hospital for a long time.






4 comments:

  1. I'm so glad things are flowing nicely right now! Keep us posted when you have free time! Happy Birthday to you, and Conner as well!!

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  2. I just started following your blog and I want to tell you how incredibly touched I am by your story. I'm amazed at the courage and strength you have! Thank you for being willing to share EVERYTHING... even the "not so bright and shiny".
    I have CF, which isn't easy (of course) but I think seeing my baby go through the pain and sickness would be MUCH MORE difficult! I can't explain how much I admire you fighting momma's.
    Again, thank you for sharing.

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  3. Is it Dr. Accurso's team at Children's in Denver? They are the BEST - not to mention they were my team from my diagnosis at 6 weeks through age 22! I am 100% in love with that clinic, so if you're in contact with any of the doctors there know that you are in SUCH good hands (and even if you're not, I'm sure the docs you've been referred to are amazing).

    Grover is adorable, and I'm so happy you all have a break (however brief) in the IV schedule to relax as a family and enjoy your new addition. Much love and light coming your way, as always, from NYC!

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