Living Life By Degrees

As we approach the New Year, many will reflect on the past while planning for what they hope to be an even better future.  They contemplate the highs, the lows, the moments that will never be forgotten.

For those whose lives are touched by chronic medical challenges, reflection can be bitter sweet.  Woven amongst all of the good memories are reminders of illness and other health challenges.  Numerous doctor visits, therapies, medicine trials, hospital stays, possible brushes with death.

I've seen many analogies for those living life with medical and other challenges.  There's always Holland, and many have used the Spoon Theory to explain their lives to others.  For me, I think of our lives as living by degrees.  It's rare that we find something that drastically changes the course of our lives for the better.  However, over the years, we've found various treatments, interventions, medication, supplements, and the like that have added greater quality to our lives - sometimes by the smallest of degrees.

A supplement that made her fall less than before.  Another that steadies her gait.  An intervention that lessens the sensory overload.  A tube that allows him to grow.  An oil that keeps his stomach settled.  A block the eases back pain.  A conversation with a old friend who helps me keep my sanity through it all.  New friends made in the midst of the pain.  An understanding smile.

On the other hand, we've lost ground in some areas as well.  Another favorite food lost.  The return of a symptom we thought we were leaving behind.  A needed medication with side effects too difficult to handle.  A doctor who doesn't understand.  Another who admits for the first time that we may never outgrow this.  A stabbing comment, a judgmental glance, friends lost.

So, as I reflect on the past year, we've gained a few degrees in some areas while losing degrees in others.  Some days it's easier to handle than others - and some degrees are more difficult to lose than others.  However, as I look back this past year, I choose to be grateful for smallest of victories, each small degree gained.  Because there have been years with little to no victories.  And because I've learned to take nothing in this life for granted.

And in the midst of it all, I'm most thankful for a God who never changes - even by the smallest of degrees.  One who is sufficient.  One who if full of strength when mine is gone.  One Whose mercies are new every morning (not just every New Year).  One who never fails.  He is my portion.  He is enough.

And even if today is the best my life ever gets, my soul is at peace.  He has already met my greatest need in Christ.  My eternity is secure.  Everything else pales in comparison.

"Jesus Christ is the same yesterday and today and forever."  Hebrews 13:8

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.  “The Lord is my portion,” says my soul, “therefore I will hope in him.”  Lamentations 3:22-24

On the Edge of Normal

Did you ever watch the movie, A Walk to Remember?  The main character had a list of things she wanted to do during her lifetime.  One of the items on her list was to be in two places at once.  A friend helped her to mark this item from the list by taking her to the state line – to stand with each foot in a different state.

I think that’s a pretty good analogy for my life right now – living in two places at once.  On one hand, our life can seem pretty “normal” to most folks.  Just glancing at the surface, you may not notice anything out of the ordinary.  The standard family of four – mom, dad, two kids.  Sometimes, I can almost forget it myself.  We’ve found our new normal, developed our routines, adjusted our lives to meet the cards we’ve been dealt.

 

 

However, it doesn’t take much for us to be suddenly be jerked back to reality.  Every holiday or special occasion really – because they always revolve around food.  The look on his face when nearly every gift he received at a party was something he couldn’t eat.  Any overnight event – because most kids don’t have to take along an assortment of medications, bags of their own food, and various other items needed to survive time away from home.  And if we’re all gone more than one night, you better not forget to check “the list” or you’re sure to forget something extremely important that can’t be picked up last minute at your local supermarket.  (I can’t even imagine what will happen if I ever have to get it all onto an airplane!)  Then, there are the common, everyday illnesses that always have the possibility of putting one of them in the hospital.  Will there come a time when her body decides not to bounce back?

And there are other affairs – concerts, recitals, awards ceremonies, field days, and the list goes on.  Will this be the moment that the other kids notice?  Will this be the time someone says something unkind and breaks their fragile little hearts forever?

A few weeks ago in Sunday School, our lesson started out with this question:  When have you felt like you belonged?  While I never shared my answers aloud, there were several moments that came to mind.  At the top of the list are Magic Moments Family Camp and Give Kids the World.  That’s because while we generally manage to travel undetected in the population often referred to as “general” or “normal,” the kids’ long-term health issues also identify us with the world labeled as “special needs.”  And honestly, this is where I generally feel most at ease, most at home.

It’s when we’re with this group that we don’t have to explain the tubes, the gait disturbances, the special foods, the medications, and need to stop a while to give your body time to recover.  Staring eyes are filled with understanding and love.  If your child becomes irritable or difficult to manage, they don’t automatically assume he or she is a behavior problem and just throwing a fit.  Because they know - they really know.  Because they’ve been there too.  And while our lives and situations are all very different, there is a common pain, a common loss, and common understanding that the other side of our life - the “normal” side - may never get.

All of this reminds me of another struggle, a spiritual one.  While my body is here on earth, my spirit longs for the day when I will take residence in my eternal home.  Until then, I have one foot here on earth and another standing on His promises (2 Corinthians 5).  Because only then will my soul be at rest.  Only then will I feel completely accepted, completely at peace.  No more struggles, no more tears, no more pain, no more “normal,” no more “special.”  Just an eternity with my Savior.

 “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”  I Corinthians 13:12.