Sunday, July 27, 2014

A measure of strength

These past two months have been painful.  I mean like REALLY painful. Shake me to my core, take away my breath, manifestation of all my worst fears painful.  I am in a position that I never imagined myself being and I'm angry.  Bitter.  Traits that I do not value in myself are rearing their ugly heads.  I am shutting down non-necessary emotions, friendships, and activities.  I apologize to anyone who feels like I'm ignoring them or being rude. I am not currently a fun person to be around...
I keep being told "how strong" I'm being.  What a strange thing to say to someone whose shoes you have not walked in.  How can you "know" that someone else is emotionally strong?  How do you know what I am experiencing and how I am responding from the few filtered thoughts that I allow on Facebook?  How can you possibly discern my strength unless you can weigh it against the number of times I fall on my face and cry and pray each day?

About 4 years ago, shortly after learning of Logan's Cystic Fibrosis diagnosis, I came across the blog of a fellow CF mother. Her name is Sarah and if you don't know her family's story you can check it out at  She is the mother of 4 children.  Her oldest, Conner, passed away in June of 2010 from CF and other complications.  I will let you READ the rest of their story because she is a beautiful writer and I can't do it justice, but her loss has weighed heavy on my heart the past two months.  Every time I lose myself to grief, which believe me happens a lot, my mind turns to Sarah.  A mother who had to bury her son.  How many people must have said to her: "Be strong!"  or "You are so much stronger than I am!".  I have to wonder if she thought she was strong in the middle of all her pain and anguish. What measure were people using to judge whether or not she was being "strong"?  What I am dealing with can only be a fraction of the pain she felt and continues to feel.  It was not her choice that she be faced with the death of a child.  It is not my choice now to deal with yet another life threatening illness reaping havoc on the precious body of my son.  MY SON.  The child I carried and nursed and love.  Believe me, if I had been presented with the choice to either deal with this lot or NOT deal with this lot, I hope you can accurately imagine which choice I would have made.  This is not a strength of choice.  This is not a strength of hard work and determination.  This is a strength borne of obligation.  An obligation to my family to protect and love them in sickness and in health.  An obligation to my daughter and husband that just because my heart is breaking in pieces and my priorities lie with Logan, they will not be ignored and their needs will be met. 

Regardless of the advice from other people, I cannot HELP but allow myself to think of the "what ifs" and the possible outcomes.  What if he doesn't make it?  What if he relapses?  What if his spirits fail and he gives up?  What if we make the wrong choices medically?  What if I have to bury him?

What if  I'M not strong enough?

I have always been an excellent worrier.  It's one of my worse qualities.  In addition to worrying, I'm also one of the most sensitive people I know.  Not sensitive as in "Oh you're so sensitive to how I'm feeling, Steph!" but more like if you tell me your puppy broke his nose I'm going to cry about it.  Twice...  That kind of sensitive. My husband has become very adept at the look he gives me when I'm crying at something ridiculous. Like Tinkerbell movies.  I am engulfed with worry.  I feel like I'm swimming in the open ocean and the waves are crashing over me, pounding me in repetitious: WORRY, OBLIGATION, WORRY, OBLIGATION, WORRY, OBLIGATION... and then in the middle of it all (as a friend of mine perfectly described), I will have small moments of sheer bliss.  When my daughter grabs my cheeks and says "I love you, mommy."  When my son tucks his head into my lap, grabs my hand, and sighs a deep sigh.  Sometimes a sigh of pain, sometimes of contentment, but whatever he's feeling, he's sharing it with me.  Those moments of bliss are what are keeping me afloat.  They are what I live for these days. 

I guess each person has a different definition of strength.  Each person measures it differently and I don't think any one way is right or wrong.  I do know that I do not consider myself to be a particularly strong individual.  I believe that I am loving, nurturing, kind, intelligent, and dependable.  I believe that Logan is strong.  Stronger than any adult or child I've ever met.  Strong enough to understand that he has cancer in his body and that it can't stay there.  Strong enough to understand that chemo, or as we call it "superhero juice", is what's causing him to vomit 20 times a day and still be willing to do it.  Strong enough to ask me questions like "Why did Jesus allow me to get cancer?" and be prepared for honesty in my answer.  Strong enough to educate the people behind him in line, with gentleness and accuracy, who were whispering about his bald head.  Strong enough to sit still and not fight his vest therapy and CF meds even though he knows the salty taste will make him gag and the vest will hurt his central line.  HE is strong.  Conner was strong.  The fighters are strong.  I am just the woman in the corner cheering, crying, loving, and praying.  And worrying.