CF Awareness Month

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May is Cystic Fibrosis Awareness month along with a slew of other awareness causes.  I have been reading posts from fellow CF travelers on Facebook and following the Great Strides Walk posts.  I wanted to go to our CF Great Strides walk this year and I really had every intention of going.  When Sunday came I just couldn’t do it.  It was just too overwhelming to be there with other CFers and their loved ones who are fighting this awful disease and raising awareness and funds to find a cure.  A cure that did not come in time to save Melanie and probably not in time to save Rosie and definitely not in time to save so many other who have died too young from this disease.

My life is consumed with CF and has been for 18 years.  I have spent the majority of my adult life learning to live with this horrible monster that invaded our family so many years ago.  Yes, it has taught me some good lessons.  I cherish my family and the time I spend with them.  We do things as a family that don’t make sense to some people. W have lived our lives in a way that some have not approved of or understood.  In the end we didn’t want to have regrets.  I wish we would have taken that last trip to…  I wish I would have taken her to.., I should have let her…

Do I have regrets? You bet I do.  But do I regret doing the things we did with Melanie while she was here? NO!  I knew that one day those would be precious memories I can hold on to for the rest of my life here on this Earth.

Living with CF is hard and it is my prayer and wish that someday very soon there will be a cure so no one will have to know the suffering that comes with this disease.  I count us among the lucky ones. I cherish the time I had with Melanie and while we all wish we had more time with her I am at peace knowing she is perfect and healthy in Heaven and someday I will see her again.  Melanie really was my best friend and I miss her friendship.  I still talk to her and I like to think she listens. This path called grief is a strange one.  So many ups and downs, twists and turns.

I have hope while I walk this path of grief that Rosie will get her transplant.  I want 2014 to be a bitter sweet year.  I want Rosie to have a chance to really live life just like I wanted for Melanie.  I have had moments with God when I have begged him to allow Rosie to get new lungs.  I can’t bear the thought of loosing her the way we lost Melanie. I’m not sure our family could survive that much loss.  My faith has grown stronger and I can’t imagine walking this path without God by my side and I’m sure He is carrying me more often than walking next to me.  Someday I will need Him to carry me less but until then I and thankful that He promises never to leave me.

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