Midnight

The below was Tiffany’s second to last journal entry before she passed away, and I shared it with our church family this morning. I think this entry really points to the struggle that one faces with chronic illnesses but also reveals the hope and quiet rest that Tiffany had in God. Sometimes we think that God is only working if He gives us deliverance, but God is at work in our difficult circumstances and gives us His grace, strength, and peace.

“often i find that night time is one of the hardest times for me.  there is something about the stillness, the quietness that brings thoughts and emotions.  last night was a time of some frank discussions with my Lord.

there were some tough questions that He and I talked through....

why did he allow the cf? why was i the one blessed with it?  why couldn’t i just be normal and be able to enjoy a quiet life with my hubby-looking forward to many years together? why were we faced with these tough choices?  why is this sooo hard? why can’t it just be easy? i don’t think i can do this? i don’t want to live life like this?

it was a time of wrestling, of tears, of frustration, even sometimes anger and yet His quiet peace permeated it all.  i don’t have all of the answers and much is still raw, but i know i can rest in His grace-it is sufficient.  this is not out of his control...he is ordering each and every step. There were no new earth shattering revelations-just peace, a peace that it hard to explain-a quiet rest.”

Dying...a new reality

     One of the realities of life with a chronic disease is the reality of death.  As an adult with CF, I thought that I had personally come to terms with this reality.  However, events of the last few months have proven otherwise.

     As a CFer, growing up, my parents did not hide from the fact that the disease I was dealing with would most likely take my life.  At diagnosis, they were told that they would be lucky to see me reach the teen years.  Now at 34, the life expectancy is in the late 30’s (there is a 67 yr old CFer at my clinic-very cool).  So the reality that I would die young is something that I dealt with early on.  My faith plays a huge roll in this.  Although dealing with a fatal disease, I am a firm believer that my days are ordered by my Lord-my life is in His hands-not in CF’s.

     Now to the reality of today.  The last several months have been difficult.  My pft’s have dropped to a new low-35% with already two rounds of IV’s abx and lots of questions.  I have been faced in a whole new way with the reality that my body is dying.  This has been tough.  It has resulted in a lot of questions-some good, like what changes need to be made, do I need to focus more on health maintenance and some not so good, like Lord, why do I get to deal with this, why won’t this just disappear-yes, and some wrong thinking on my part.

     So, I am actively working at changing some of my thinking.  Working through, again, a fear of death; more accurately a fear of all the not so fun things that are likely to precede death. Working through a complete trust in my Lord and that He has in fact not left me alone to deal with this.  Thinking through the reality that a double lung transplant may be closer that what I had even considered.  The reality that I may catch a bug, have to go to the hospital and never come home.

     In working through this I am focusing on the truth of who my God is-the truth of His character-the fact that He is sovereign and that He has not left me to deal with these things without Him.