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, May 2, 2011

Are you aware?

Are you aware that every single day a baby is born with Cystic Fibrosis? 1 in every 3000 live births is diagnosed with CF. Are you aware also that every single day a person with CF dies? Is that ok with you?

Are you aware that CF is the most common, deadly, genetic killer of children and young adults, attributing to 484 deaths per year, 40 per month, 9 deaths per week, and one death each and every day?

Are you aware that a median predicted age for someone diagnosed with CF is mid 30’s? Is that a long enough life to you?

Are you aware that if you are in a room of 100 people, statistically there will be 5 symptomless, unknowing carriers for this devastating disease? That’s more than 12 million Americans.

CF is not a faceless disease.

We all know people who are living, fighting and surviving with this disease. We all know at least one precious child, Conner, who didn’t win against CF’s death sentence. CF is very real. It’s very lethal. It takes ahold of a body and ravages it, devestates it, complicates even the digesting of food and leaves a family overwhelmed with therapies, medical bills and doctor appointments. are you aware of the battle these 1000 new families diagnosed each year face? Have you seen CF’s progression…if not take a look of what it did to our sweet boy…

7 years ago we first learned of CF. And now 7 years later we know more than we could ever care to know about the power this disease has…

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sketch Conner

CF allows for some family memories, school and normal living…

 

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sometimes it’s generous enough to let you lose a first tooth or two…

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slowly is starts to change your life…adding lots of medications, dr visits and hospitilizations…

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it forces you to have to Make your Last big wish…

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then it forces your body to work so hard just to breathe and survive that you can’t wake up and enjoy life…

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it forces you to knowingly celebrate your last birthday alive at 7….

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spend your last mothers day together…knowing the only thing you want, you can never have!

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do your last family trip together…

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you try with all your might to not let it stop you from living and enjoying life…determined to smile thru the pain…

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but sometimes it just shows the damage and pain…

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and you quickly realize your no match for it.

One day you wake up and it’s the day you’ve dreaded your entire life…

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the last one together this side of heaven…

you stand by and watch, helpless to save him or stop death from stealing your angel…

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but…you can’t.

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and you’re forced to try to pick up the pieces of your shattered heart and move forward without him…one quarter of your life…but you can’t

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you’re a family of 5 minus a beautiful 1…and life will NEVER be the same…

BUT…CF is still real! It’s still stealing lives and loved ones everyday…

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So we continue the fight in honor of him….the one who taught us how to appreciate the little things in life and face each day with a brave smile…

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and to try our hardest to stop this disease before is destroys another family like it did to us…

Great strides for CF is May 14th here in Vancouver, WA. Please help us find a cure! click the link to join our team, donate funds, and pass along not only to help CF stand for CURE FOUND, but to let CF parents sleep easy at night knowing that their child isn’t a walking time limit…nor a statistic…but a child who has the potential to live a very LONG and healthy life without CF stealing away their dreams! I’m keenly aware of CF and what it does and is capable of doing and I’m not going to let it keep destroying. I know CF is not a faceless disease but has many, 30,000 faces infact. And now…you’re aware too…question is what are YOU willing to do about it?

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7136&idUser=134723

God Bless…

With broken hearts and LOVE LOVE LOVE

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11 comments:

  1. Great Article About So Much Tragic Awareness! My youngest Son is CF Rider Brian K. Johnson who is presently Riding a Motorcycle Across the Country to Spread the Word about Cystic Fibrosis. CF Riders Nationwide Ride for Life; 10 weeks through 44 States and Many Cities. His wife and 3 year old daughter along with another Team Member are following in an RV.

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  2. My Grandson was born in 2009, with him came Cystic fibrosis.

    I have read, I have written, I have got involved, I have cried, I have worried, I have thanked God for every day, I have been angry, I have nursed an aching heart daily, I have watched my eldest son be so strong when his first child has been so ill ..... But I have never cried as much as I did reading this.

    God love that angel ... and your family

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  3. I'm aware!
    Cure CF baby!!!

    Breathe Easy Connor <3

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  4. You are amazing as you still continue to fight the fight of CF to find a cure and spread the word to help others see how devastating CF really is. Hugs to you and your beautiful family with many blessings to sweet Connor, one of heavens sweet Angels.

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  5. This is one of the most powerful posts about CF I've ever read. Thank you for continuing your fight and for inspiring countless others. And thank you, sweet Connerman, for all that you continue to do. Much, much love.

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  6. Very, very powerful. I only know a little of your pain, as my son with CF will turn 15 this month. My son is my greatest joy and my greatest sorrow, b/c from the very day he was diagnosed, I could never look into his eyes again without feeling both. I have said over and over again - life is very precious and no one knows when they will leave this world, but to a mother of a child w/ CF - at times the ticking of the time bomb w/in their body (CF) is so loud it is deafening ......CF is a thief and a coward. It steals childhood, health and joy from both the children that fight it and the parents who fight alongside them. I have never felt more helpless in my life. But I will not let CF win - I am determined to help my son live his life to the fullest however long it may be. CF has given me the gift of not taking one single second of his life for granted. Thank you so much for telling your story and honoring your son's hard fight in doing so. His voice deserves to be heard - and I am right there with you fighting the good fight against a disease that often refuses to really show "itself" until it's too late. CF is so hard to raise awareness and funding for because they look so healthy/normal - until .....they don't. As you can tell - I've been at this a good while now but I will not give up until CF stands for cure found or I leave this world myself. God bless you and your family - may God's peace heal all the hurt and may His love surround you until you walk the streets of gold one day with your precious son - who is healed and whole !!

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  7. My best friend named her baby "Connor," it reminds me of your "Conner." Keep going. We love you. :)

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  8. You are an amazing person. This is an amazing post. Thank you for all you did for Conner and for keeping the hope alive that someday, there will be a cure for CF.

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  9. LOVE, LOVE, LOVE your informative, yet heartbreaking story...I too, am minus an angel- trading her lungs for wings as well.(11/22/02) I continue to fight each and every day for my son - truly appreciating each and every day as a gift from God...knowing that one day, we will all be rejoined without CF! God bless you and your family.

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  10. Such a sweet, heartbreaking story that I can relate to. I also have an angel that lost her battle with CF. She was a little older than Conner, 19. No matter what age, it's too soon! Amanda's been gone 6 1/2 yrs now. Our family still supports CF and walk in her memory of her every year. I'll keep you and your family in my prayers. Maybe Conner and Amanda have met. I know they are finally breathing easy!

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  11. Our CF angel Rebekah died at 17 almost 8 years ago. I still sing to her on her birthday, laugh with her at things she would have found funny....never gone or forgotten. We have a son with CF, age 28, married and has a son...biologically his after arduous fertility procedures for both him and his wife. We are SO grateful for every day we have with Aaron. God gives us wonderful memories for both children that allow me to go on daily sharing life with Aaron and his family and being okay with returning Rebekah to God. I know she is livening up heaven! CF --- it'll take your breath away. Keep fighting!

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