Its so nice to feel loved.
To feel supported in something so dear to our hearts. I love how God brings people together for a very important cause to our family. To destroy Cystic Fibrosis. A year ago, I couldn’t have imagined the variety of people who were there with us today, and who wouldn’t be there any longer. it worked out perfectly. we gathered at the lake at 2pm to do a 5k in honor of our sweet son who lost his battle 9 months ago…Conner
my heart was heavy, as were my legs, as I ran, alternating running partners between Erin and Brandon…
and Amy…
this time a year ago, we were in the hospital for another CF IV cleanout treatment, we were talking with hospice and trying to figure out what is best for our child so he could die peacefully…something I will never be able to put into words, nor would I ever wish that upon anyone. finding the strength as a parent to sit in those meetings, constantly with a HUGE lump in my throat, and trying to be strong for Conner, and to honor his fight, and help him to pass into heaven in comfort and free from pain.
a year ago we were planning his last birthday on this earth. and now we can’t decide what to do for his first birthday as an angel…away from us. I truly hate this disease. it’s killed the dreams of so many innocent families, it’s robbed so many moms of their babies, so many fathers of their firstborn sons, causes excruciating pain that cannot be put into words…
it took a HUGE bite out of me, chewed me up, and spit me out in pieces…tiny pieces, that I still after 9 months cannot figure out how to put back together again. I’m numb. I walk around wounded. a very heavy chest. a tear threatening to fall almost constantly, and I do release it every once in awhile…but I know that truly once I start, I may never again stop. my heart hurts. I’m incomplete…
so, today, it was my HONOR to run for you families still in this fight. for you adults living the day to day grind, you parents fighting with insurance companies and sterilizing and going insane over sputum cultures. I run in honor of all the pregnant moms-to-be who will have a child diagnosed with the leading cause of death in children of any genetic disease, I run for the afraid, those on ventilators, those waiting for transplants, those families sitting right now holding their CF warriors hands, for the parents starting “those” discussions, those in hospice, those who are thriving, those who refuse to quit living…and so tonight my feet ache, but it’s a good ache.
a worthwhile ache.
today I out ran cf with all my might…
so that tonight I can rest my head knowing that someday we won’t need to outrun it any longer…
With Love & Broken Hearts,
I love you! You are a strong, amazing and inspiring woman. <3
ReplyDeletesimply amazing...i thank you with all my heart for running for Aidan and all of us CF families...we feel the love...megan
ReplyDeleteI almost made it through an entire post without crying...until the picture of Hunter crying and missing his best friend. So much love and prayers to you always! Amazing and inspiring!
ReplyDeleteThank you
ReplyDeleteInspiring. What a sweet tribute to Conner.
ReplyDeleteThank you, Sarah, for all that you have done and continue to do.
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ReplyDeleteI just found your blog! I am a 28 w/ CF in Ptown. I spend many years at OHSU but due to healthcare coverage I am at Kaiser. Dr. Wall diagnosed me in 1982. So sorry for your loss, my mission in life is to bring awareness to CF, organ donation and patient advocacy. We will find a cure, we have to.
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