After 22 years of fighting my daughters life was taken by a cruel disease. My adult son continues his fight against the same disease.
I could say Cystic Fibrosis ruined my life but I will not let it beat me down. This is the story of my journey. Volume II
Volume II, Chapter 1
Today I have decided to begin publishing Volume II of my life. I have been writing since Maddy died but I didn't want to publish as I went. There have been things going on in my life that, until now, have needed to remain private. Over the course of the next few weeks I will endeavor to polish up these writings and publish them in the hopes that my story, struggles, and success will be able to bring hope to others as they battle in their own lives. I will begin by saying I am blessed, life is good, and God is faithful. I hope these writings find their way to people who need to see them.
4/5/15 Easter Sunday
I have been encouraged to begin writing the final chapter while I am still processing this monumental loss and at first I thought “thats crazy!” But as I have been thinking over things the last few days it seems to make sense for two reasons. First, these blogs have always been a form of catharsis for me. I admitted to having written a blog entry for my personal blog in the days immediately preceding Maddy’s death to one of the people who encouraged me to finish this blog. After that conversation I finally posted that entry and even though I know there is little chance anyone will find it and read it I felt an immediate release as soon as I hit the post button. As if a weight had been lifted off my chest. Second, I am finding that some of these feelings I have experienced in the last few weeks are fading away. Which I never thought would happen. Not that I don’t still hurt. Maybe it’s a numbing PTSD kind of thing that is blocking some of the worst memories. I want to process some of them before they fade away totally. Oh, and third ( I know I only said two reasons) there may be someone out there who can benefit from the insights I have gained from this horrible experience. So I want to honor Maddy by helping others deal with their pain.
So here goes. As many of you are already familiar with my blogging style I will begin by putting your mind at ease. I will not recount Maddy’s final days here in detail. Those who are closest to me have already been told of her final days. I will say that Maddy never gave up and never stopped fighting. She was and is the strongest person I have ever had the privilege of meeting. Her strength will continue on in those she touched. Now I must go on to state the obvious.
I have never felt such pain and despair as I did the moment my darling Madelyne died. In many ways I have attempted to prepare myself for that day, but there is never any true way of knowing the depth of the pain that comes with the loss of such a huge part of your life. I felt like the earth swallowed me whole. I could hear and see what was going on around me but it was like everything was miles away. There were a few moments of clarity because I had Ethan to attend to and care for. Also Maddy’s best friends Ariel and Taylor had come back to say goodbye while we waited for them to come get Maddy’s body. They gave me some more people to worry about and try to comfort. At one point Taylor asked me how I was comforting her when it was my daughter who had just died. I told her that as much as I missed Maddy already I knew she was no longer in pain and that being able to comfort and care for her best friends was like having a little bit of Maddy to take care of again. Those young ladies and another of Maddy’s friends, Niki, who lives in South Florida have become like daughters to me. They have been a constant source of comfort as they check up on me frequently.
It soon dawned on me after Maddy died that I do not know who I am if I am not Maddy’s caregiver. We had such a close bond that no one else shared. There was nothing more important to my world than helping Maddy fight CF and her transplant rejection. And in the blink of an eye that purpose was ripped from my life. Who am I now? What am I supposed to do with my life? Obviously I have Ethan now but fortunately he is not in a position to need the type of care that Maddy did. Happy, healthy and productive have always been the criteria I have asked my children to live by. Ethan is doing a really good job of living out that calling. I am so proud of the man he is becoming and I am grateful that it appears he will have many healthy years ahead of him. But there is always that darkness looming, that I will have to watch him fight the same loosing battle one day. I pray that day does not come for many, many years.
But still the question lingers. Who Am I? I began a new tattoo theme on the arm that has my sparrow with Maddy’s name on it. It is an Alice in Wonderland theme because that was a very important book for Maddy and I. I have Absolem, the caterpillar from that tale, tattooed just below Maddy’s sparrow. In the cloud of smoke coming up from the caterpillar’s pipe are the words “Who Are You?” Those are the words he asks Alice upon their first meeting. That tattoo and phrase greet me every morning in my new quest for identity. Not many people have the good fortune that I had while I cared for Maddy. Yes it was a difficult road, probably one of the more difficult roads anyone could walk with their child. But on that road I had a clear and definite purpose. Care for Maddy! Now I feel as if I am a ship out to sea with no rudder, a storm raging around me and I can’t even lower my sails. There is no clear direction…
Until a few weeks after Maddy’s death. Our radio station has two on air fund raisers each year. I didn’t know how I was going to pull it off. I could barely function. How was I going to work, be on the air no less, and ask for money from our listeners? John was nice enough to make the schedule without me on it. But that meant all the people I work with, who had already been bending over backward to cover for me over the last few months of Maddy’s life would have to do that entire grueling week without my support. I couldn’t do that to them, so I offered to run the board for the drive time broadcasts and pre-record the evening shift, since the evening guy was scheduled to cover my mid day fund raising shift. I wanted to be part of the team and carry as much of my weight as I could in order to thank them for supporting me so much. I’m so glad I didn’t just wallow in self pity and ask for the week off. In that week of running the board and hardly speaking live on the radio. God showed me more grace than I every thought I would see. Person after person called in and made a monetary gift to the radio station in Maddy’s honor. They shared encouraging words and reminded me that I am being prayed for by many, many people that I have not met, and probably never will. Knowing that my sharing of our struggle publicly and inviting God’s people to pray for me affected lives and encouraged them to give to our little ministry gave me a sense of purpose again. It reminded me that my children are not my only reason for being on this planet. God had blessed me with the opportunity to be part of a ministry that changes lives. I will not let that ministry down.
Thats about all I can process for this day. More next time. p.s. I went back to Church for the first time in a long time. (more about that later) My Mom was very happy when I texted her this picture.