Wednesday, February 26, 2014

At War

My feelings this morning are very "at war" with themselves.  It's like a 5-way traffic intersection in my brain and I'm sitting in the middle of it with my hazards on, trying to make sense of the confusion.  Let me explain...

This time of year is always hard for me.  I have a VERY intense Love/Hate relationship with the Cystic Fibrosis community during the Great Strides fundraiser season.  In an effort to reach out to other people, educate the public, and appeal to their friends for money (myself being no exception), this time of year the CF community comes alive with activity.  My Facebook feed is flooded with personal blogs detailing the intensity and frustration of living with this disease on a day to day basis, and YouTube videos reflecting the seriousness of the disease progression and the prognosis.  Beautiful children, hardly outgrown of their baby fat, crying in pain, taking pills, doing treatments, all staged in perfect time to some heart-wrenching melody reminiscent of Sarah McLaughlin and the ASPCA commercials.  It's heartbreaking.  It works.  And me, like the true masochist I am, watches EVERY SINGLE ONE OF THEM.  It is not uncommon during the months of Feb-May for me to randomly burst in to tears when I hear an emotional song or scroll through Facebook.  I love these posts.  I hate these posts.  It makes me exhausted to be consistently reminded of how little time I may have with my son.  It makes me celebrate to see people with CF "beating the odds" or receiving life-saving transplants. 

The CF community is a truly tight-knit community.  We build each other up, support each other, encourage each other, give ideas and opinions when someone is in need, send medications when someone runs out, etc.  I have never encountered a group of people that is more supportive of each other than this community is.  EVEN in the church.  So it is often that my desire of scrolling through Facebook is to find encouragement in this area.  When I'm feeling low, and looking to be lifted up, I'll scroll through my news feed looking for such encouragement and instead I am met with these videos and blogs that, for all their good intentions and purposes, just serve to bring me down even more.  This season truly shakes me to my core. This constant reminder of the facts and statistics of CF tests my faith in a very tangible way.  I often find myself crying out to Jesus in the dark of the night.  Praying for "the miracle" that might save my boy.  Praying a hedge of protection around my children and their organs.  Praying that He strengthen me enough that Logan never feels the repercussions of my weakness...  I read a post from a friend the other day whose son asked her: "Mom, have any kids every died from CF?"... my heart broke in two.  It's only a matter of time until I have to address these questions with Logan and it terrifies me.  I'm so glad that she posted this and that her friends reached out to her and (hopefully) lifted her up and blessed her, but for me, that post made me want to puke.  Not because of what she posted, but because that is my life.  That is the life of all of us living with and struggling with chronic diseases.  It's like a slap in the face.  A reality check.  Every. Time. I. Log. On. Facebook. 

Here's the double edged sword though, I can't delete or take a FB hiatus because I use it just like everyone else does during this season to reach out, educate, and raise funds.  The thing that I desire most requires posts and videos like this to come to fruition.  To find a "cure" we need to research.  To have the ability to research medications, we need money.  To get money, we must fund raise.  To fund raise we must appeal.  To appeal we must be accessible and relate-able.  Social networking is the ideal platform to become accessible and relate-able.  There is no government financial support for CF research because it doesn't affect enough people. 

In closing, let me say this.  I am sorry to those of you who roll your eyes at my persistent posts and links asking for your money.  Please don't misunderstand my intentions.  It is one of the most difficult things I do all year.  I hate asking for money.  I hate asking for help.  I am an independent spirit.  I don't want to complicate your life or make you rearrange your  budget so that you can obligatorily contribute to something that doesn't directly affect you.  But, thank you for putting up with it. 

To those that are also struggling with emotional divergence, who are sitting at that intersection and are unsure which path is appropriate, I am there with you.  I love you.  The direction we travel is a choice.  You can choose to let this season affect you positively or you can choose to let it affect you negatively.  Sometimes it's a daily choice.  It is for me anyway.  Just know that whatever direction you choose, it's ok.