D-day 2 years out

2 years ago today my life was forever changed. On March 31st, 2009 we were told that our youngest son, Cole, who was 12 days old has Cystic Fibrosis. If I knew then what I know now – well, we all know hind sight is 20/20. I am sure I would have still needed to go through the grieving process. I honestly don’t know exactly what would have changed. I wish I could say that I wouldn’t have gone through those periods of incredible horror, anxiety and depression but to be honest, I still have fleeting moments of terror when I remember just what we are up against. When the harsh reality of just what this disease does to their precious bodies and the ultimate fear of losing my son consciously pummel my mind. It is not that I would be relieved of all these horrendous fears. It is that I would be able to see what a blessing this horrid disease would also bring to my life. It is hard to even say that out loud…this curse also being a blessing. It is a lot easier to say since Cole has been and continues to be a beautiful HEALTHY little boy. It is a lot easier to say when the promise of a cure is so close I can almost taste it, just as I can taste Cole’s salty skin.


This disease is a lot of things. For our family we’ve decided to make it a double edged sword. We rejoice in what we’ve been given. I thank God for all the blessings he sends our way. You have to remember…there is no bad without good, no light without dark. Some people have a harder remembering what is truly important and living in the moment. I am one of them. CF helps me to remember. It helps me to live life fully.
So exactly what are these blessings I speak of??? How has CF brought any good to my life? Let me explain! Cystic fibrosis has brought me closer to God. The biggest blessing he sent was that I have yet to question why CF was handed to us. It is as if He put that knowledge in my soul and allowed it to be known to my unconscious mind. I don’t have the answer but I don’t need it either. I didn’t get mad a God. I didn’t question my faith. He used it to draw me in, to remind me how strong my beliefs are and how important they are in my life. It has helped me fine tune who I am and strive towards the person I want to be. (For example, I fully credit CF for motivating me to run my first ½ marathon last spring.) It has helped me to see my “reasons” for being on this earth. Cystic Fibrosis has made me a better mother, wife, daughter, friend, person. Cystic Fibrosis has allowed me to see what is truly important in life and keep these realizations in my daily life. It has helped to free me from those superficial perceptions of who I should be and what I should be doing with my life. It has allowed me to have empathy and compassion for others way beyond I was ever capable of before. It has brought amazing people into my life who share their triumphs, fears, advice and daily lives with me.
Unfortunately, my son will have a totally different outlook on Cf. For it is his beautiful little body that it will ravage. His lungs that it will disease. His opportunities that it will try and destroy. I just pray that I can teach him the beauty of what we are each given in this life. As ugly as it may seem, there is beauty in there. He is so strong and I believe God gave him CF for a reason. It will just be up to him to find it and do the best he possibly can with it.

As a side note: Happy 21st birthday Becky. Your beauty was so easy to see. Your diseases was not. I wish I could say I would have the strength to write like this if my son is robbed of his life before his 21st birthday. I will be honest – I think my outlook would change. I pray for your family. I know you’re looking down on all of us now smiling!!!

Gone but not forgotten

The days keep going by.  The amount of condolences and times I reach out diminish.  BUT it doesn't mean that I don't remember.  It doesn't mean that I don't still think of you and ache for those whose daily life will never be the same without you. 
It seems so many have been lost in the past few years.  So many untimely deaths (in our perspective).  I watch you grieve.  I watch you continue to live.  Your strength brings me to tears and to my knees in admiration.
I just hope you know that just because I haven't mentioned it to you lately, I have not forgotten.  I still imagine the emptiness that is left with their passing and the fight you battle daily to continue on and stay strong. 
The truth is I don't know what it is like so I don't know when and how to bring it up again.  I worry that this is a "strong" time for you and that my comments might make you weak.  I wonder if you want to hear those words come out of my mouth. 
I just want to say that I haven't forgotten.  That your loved ones are still in my thoughts and prayers regularly even though I don't talk to you or bring it up.  I want to tell you how much of an impact they have left on my life.  Each and everyone of them have helped and inspired me in ways I will never be able to tell - just as you have.
I pray for you to find peace with their death.  True peace if that is possible.  It must be helping because you are amazing!  You have continued on and live life to the fullest. 
I love you!