Off Kilter

Monday was a long day.  It was clinic day for us.  There were things that were different and unexpected and these threw me off kilter a bit.  I didn't realize how much until we arrived home and I hit the bed.  Finally done with a long day filled with both joys and stresses I relaxed and the emotions came freely.

There are so many things about CF that are extremely difficult.  Finding balance in life with CF for our son, as his mom, is so difficult.  I want the most normal life possible for him without taking stupid and unnecessary risks.  Risks for those with Cystic Fibrosis are all about bacteria!  Someone at our clinic said it's like walking a balance beam between total paranoia and too much risk.  In between is the fine line that is normal for our son.  We've just got to find it.  We, as his parents, have to define and decide exactly where the balance beam lies.

Progressive..........it's a thing that can allow me some denial..............some.  Until I see an x-ray and there's a bit of white fuzziness that wasn't there before.  Nothing overwhelming.  Just a confirmation of the junk I've heard rattling around in there.  Progressive.............undetermined progressiveness.  Speed unknown.

Will I ever get accustomed to this?  Like, I want to?  The only thing about CF that is certain is that it is progressive.  How I loathe that word............on many levels.

My mind knows that the things we consider certain many times are not.  There is only one certainty and that is Christ.  God is sovereignly in control.  He assures me that in this world I will have trouble.  He encourages me to take heart because He has overcome the world.  I know, from His Word, that our life is like a vapor.  I know that all things work together for good (his definition of good) for those that love Him.  And, I know His mercies are new every morning and His grace is sufficient for me.  Oh Jesus, thank you for your Word in my heart.  That I can lean on You and Your promises to me.  My goodness Lord, I thank you for all my life holds that makes me trust and depend more deeply, thoroughly on you, in a way I wouldn't otherwise.  In that way, I thank you for CF.  

But, oh Jesus.  I hold that sweet boy and wonder how long I can.  I breathe him in every day.  I think ahead to his suffering.  Then I remember Matthew 6.  Who by worrying can add a single day to his life?  Jesus knows my days and our son's.

God is merciful that we don't know the future.  But, with CF, we know in part.  Imagine being told five, ten, fifteen, maybe even fifty years before it occurs, that you will have cancer and it will be fatal.  But, you don't know if it's five, ten, fifteen, or fifty years ahead.  You only know that the cancer has begun to grow and is progressive in its growth.  You don't know how many years it will be before you see and feel the affects.  You don't know how long your active battle will be.  You only know you will most definitely see the affects and you will see battle.  Who wants to know that?  Then imagine you're told that you can keep yourself healthier for longer, keep your cancer from progressing as fast, if you avoid something as common as water or air......bacteria!  But, now here's the kicker.  It's not YOU who will have cancer............but your baby boy.  Your sweet, dear, precious boy.

Oh, it's a balance all right.  And last Monday I fell off the beam.  I think it may have shifted under my feet.