We live such an isolated life here in Ketchikan, in many ways, but the one that I feel the most has to do with CF, so any connections, any conversations, or looking to other people who have a personal experience is through the internet.
I first heard about a blogger with CF through FB. I came across a post she had made about turning down a set of lungs. She had made the tough call due to the potential risk of taking them based on the donors past life. Shortly after she wrote a quick blog about the peace she had, that even though she was in desperate need of lungs she knew in her heart the right ones would come. If you have ever seen the process of getting “the call” for a much needed transplant…I honestly would be shocked you haven’t in our world of documentaries and reality TV, you would know how incredibly nerve rattling they are. She had to go through 2 “dry runs” as she called them, 2 phone calls, 2 frantic rushes to the hospital, 2 pre-op admittance and tests, all to find out that the lungs she was literally holding her breath for weren’t THE ones for her. I remember one post she had made, she was discouraged, questioning IF it was ever going to happen, IF she would ever get her 2nd chance.
I remember the day she made the post that she finally got THE CALL, finally got the go ahead and moved forward with the double lung transplant. To say the road of recovery was difficult is an understatement to say the least…seriously don’t take my word for it, check it out on her site: kellystransplant.wordpress.com
Today I read the heartbreaking news she lost her life. Tears began to well up in my eyes, I fought feelings of deep sadness for a person I never met, had a conversation with over coffee or personally got to see the mighty advocate for CF she had been. She had been having struggles with her new lungs, but ultimately passed away due to a stroke…crazy right. Her whole life, the last 38 yrs she was told more times they she could ever count that CF would take her life. Yes, because of the CF she needed this surgery, because of the surgery she suffered a stroke, so I guess you could say CF won. But I don’t believe Kelly or the many people, lets be honest, she had over 2000 people following her on FB, thought this was how it was going to go.
All day today I have been reminded of James 4:14 “Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.” We aren’t promised tomorrow, we aren’t promised a minute from now.
I get so wrapped up in the future the doctors want us to accept for Ezzy, wrapped up in the two letters my 4 yr old knew before any other letters when learning his alphabet at school. My stomach turns to nots when I hear about another life lost to a disease that has made parents stand over graves and say goodbye to the children they had so many hopes for. My deepest fear, which sometimes makes me hold Ezzy at arms length, horrible, absolutely horrible to say. I can’t fathom the void she would leave…so I find myself building walls up.
This is when I need to hold on to the fact we aren’t promised tomorrow. I need to accept that when God decides to take Ezzy home its never going to be a time that I expected. I realized today that I am getting hung up on something that shouldnt have a hold on me.
I guess this is why I go through waves of reaching out and being connected to the CF community. Many times its because I don’t want to hear the struggles, the countless hours of therapies, hospitalizations for little kids, kids that are separated from their families because they can’t breath at home.
I want to sometimes live in this deluded safe little bubble we have put our family in and block out all the darkness that surrounds those two letters.
But today, today I am all to aware that that is not healthy. That if I want to raise a courageous, hopeful, and unashamed advocate, then I need to start processing the things that are already stacked up and waiting at her door. I need to rely on the fact that God chose us to be her family, HE chose us to not raise her in fear, but instead chose us because He knew she would need us, but more importantly that we need her.
So today, I am choosing God to be my filter in the scary world of CF, I am asking Him to show Himself to me, to quiet the aching heart of a mother who is terrified to lose the little girl who shows me daily how wide, how deep, and how great His love is for me.