Solve for X

In high school I loved algebra.  At first I was frustrated by it…why were there letters in math.  Don’t even get me started on word problems from geometry.  But once I understood algebra better it became something I enjoyed.  The problem could have all sorts of letters and numbers and parenthesis but at the heart of it you were breaking a larger problem down into something manageable and workable.  Figure out what you know, figure out what you need to do and start there.  There is a lot about high school I don’t remember.  But I remember my math class and my math teacher and I remember the joy I found in solving complex math problems. 

Fast forward a few decades later in some ways it feels like life is a complex math problem.  Only there are no hard and fast rules.  Sometimes you think you are close to solving for x and realize you should be solving for y.  Or you almost have a solution for x and then life throws in a few more square roots and parenthesis and the solution you thought you had is out the window.  

Another life lesson I remember from high school math is to break down the problem.  You can easily get overwhelmed if you try to look at the whole prob
lem.  Figure out the smaller first step and do that and then the next step, etc.  My dissertation chair asked me this question early in my dissertation journey, “how do you eat an elephant?”  The answer, one bite at a time.   Again break the larger problem into bite size pieces. 

Joe and I tackle many of life’s tasks and problems in this way.  But sometimes we are faced with problems that have no solution. Now we are people of faith and we know that God is a God of the impossible and of miracles.  We firmly believe that Peter will be healed, whether be through the miracle of a scientific breakthrough, His healing touch or when he is ultimately healed in heaven.  We also have the hope and the assurance that God is with us in the day to day living until the healing comes in which ever manner it comes.  

Peter’s diagnosis with Batten’s disease did not come with a solvable equation.  His condition is progressive, degenerative and fatal with no current treatment or cure.  How do we solve for x when there is nothing to solve for?  We have to focus on the present day problems and try to figure how to solve those problems.   This is how we break that larger unsolvable problem into smaller solvable and manageable problems.  We cannot give Peter back his vision, but we can help describe the world and what is happening around him.  We cannot stop Peter’s fading memory but we can retell stories, we can help him remember when he forgets, we can give grace when he is frustrated with his memory challenges.  We cannot stop Peter’s sensory issues but we can do everything can to keep him from being overstimulated and when he is help him regulate.   We cannot predict how long Peter will maintain his current abilities but we can do everything we can to make his current wishes come true.  Now this is within reason of course, he in many ways is still a typical 8 year old boy who asks for unreasonable/unrealistic things like a pony or the entire set of a toy that he will play with once and then forget about; so while we do say yes a lot we also say no as well.  

Here are a few times we were able to say yes at times, with the help of the awesome community we are a part of; 

·

      He loved being a part of a soccer team in the spring and scoring a goal, 

·      He is currently a part of a cross country running club and enjoying it, 

·      He got to be the visiting author at a literacy event for a nearby school district and he loved answering the questions about writing his book, 

·      He entered four different items in the local fair and he placed in three of the four, which he was pretty proud of, 

·      He continues to enjoy karate and is learning to do all sorts of cool things.  

·      Sometimes saying yes means agreeing to playing a board game, having a dance party, going for a walk, a scooter ride or a bike ride.  Sometimes it means reading another chapter of a book, having breakfast for dinner, or listening to a song.  

·      Also sometimes part of yes to one thing means no to something else…one of the things Peter asked for was more times at home as a family so that has meant shifting some things around and stepping back from other things so that we can say yes to that. 

 

I won’t lie there are days where the constant problem solving can be tiring.  Add in a 15 month old that has learned to walk, run, and climb, who loves to get into things and you have a recipe for exhaustion.  But also for a lot of joy and laughter.  There are times when our attempt to solve for x doesn’t work and we are all tired and frustrated.  On those days we are thankful for grace, forgiveness and a chance to try again tomorrow.  

We also have hope on the horizon because there is a clinical trail that should be opening in the beginning of 2024 for a drug that has proven effective in slowing the progression of Batten’s disease in those over 17.   The only down side is that there will be a double blind placebo but it is still hopeful because the trial gets the drug closer to being widely available. 

 

Until next time; never underestimate the speed of a 15 month old, ever. :)