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, December 22, 2011

A mission of MAJOR awareness!

My Good friend, Josh Mogren has been working on a super secret (but not so secret) Moganko CF awareness video for quite some time. Moganko became a part of our family LONG before the Mogren’s ever did.

See…our sweet Conner you all know suffered from Cystic Fibrosis, but Moganko video’s brought joy, smiles and most importantly long BELLY laughs into our home in some of our darkest hours. Connerman loved his grover, I think that’s why he latched onto Moganko so quickly. There was never a place we went without Grover, he helped make the treatments of CF less painful and a whole lot less scary. If Conner had a surgery, Grover went and had the surgery as well, if Conner was away from home, you better believe Grover was with him, and even in death, Grover is taking care of him in heaven…here are just a few of his pictures with his Grover

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Then when Josh appeared in our lives, from the very first Moganko video we watched, we were all drawn to him. Conner sent him messages and even tried to make his Grover come alive like Moganko for Josh’s birthday in 2010…

It truly was an amazing connection that Josh and our Conner had built in a very short amount of time. We’d skype each other while stuck in the hospital, or even from home, since we don’t live anywhere near one another. I remember the evening we lost Conner, I didn’t want Josh to learn about it on facebook…so I did everything I could to get ahold of him so he’d hear it from me, not sure if that happened because we all know how news travels so quickly…but out of Conner’s death our families’ have remained very connected…and shortly after Conner passed Josh and his wife Carly came to Washington with Moganko in tow and we were blessed to meet them!

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So today marked the release of Josh’s CF awareness project that is going to bless the CF community, and I just know it’s going to spread around the country, world even, and bring light to the LEADING KILLER OF ALL GENETIC DISEASES…because a cure is needed, there are thousands being born with CF and dyeing from CF every single year, one dyeing each and everyday and many of them are children and young adults. A median age of early 30’s, while better than when Conner was first diagnosed, is still far too young. These individuals fight their entire lives to breathe, gain weight to stay healthy, live with PICC and ports, Iv’s, inhaled medications, chest physiotherapies and countless enzymes. They spend weeks even months in emergency rooms, hospital rooms and ICU’s, their parents watch as each breath is a struggle and beg and plead for a miracle cure.

BECAUSE THERE IS NO CURE…

Advancements are being made each day with the help of wonderful donations to the cf foundation, and families are getting much needed financial assistance to help cover tremendous expenses from organizations founded by people living with CF….but every breath should be easy, while on earth…because I hate the term “breathe easy in heaven…” everyone has the RIGHT to breathe free while here as well.

Without further ado…I want to spread Josh’s love to you all….and I encourage you to share it with all you know…

we WILL make CF stand for CURE FOUND…and this is a HUGE way to impact thousands…

Blessings and LOVE to you all, especially to you JOSH MOGREN…for spreading hope, courage and LOVE to the thousands living and dyeing from CF…paste the link below into your browser...and ENJOY...then SHARE!!!!!

LOVE LOVE LOVE

http://www.mogankoforcf.org/

2 comments:

  1. I adore you too, Jones Family. Love, love, love.

    ReplyDelete
  2. Connor was an amazing, brave boy. Thank you so much for sharing him with the world. I am so proud that my son brought your son even a tiny amount of happiness. God bless you all. Love, from Josh's Mom.
    Christine xoxox

    ReplyDelete

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