#11 - "The Most Important Thing Is Not To Stop Questioning." (Albert Einstein)

As a former math and science teacher, I always emphasized the importance of questions.  When you question something you are engaged in thinking, wondering, trying to make connections, trying to learn.  One of the most frustrating things about teaching was realizing how fearful students are to ask questions, to be wrong.  Instead of asking questions, or even formulating questions, they shut down their engagement in the hopes of being invisible. It would take months to create a culture where asking could happen. I would always share my personal philosophy with them, that:

1. If you always know the answer, you aren't learning anything new, 
2. Some of the most important learning happens when you are uncomfortable, and
3. Better to make mistakes or be incorrect during learning and practice than during test!

I always had high expectations of my students, my own children, and myself.  Still do.  And I have a lot of questions.

Let's start with some obvious ones.  What will happen next?  Do we need new medical equipment?  Can we get the equipment?  Will insurance cover the equipment? How much longer will my right hand hold out?   How much time do I have?  Closest thing to an answer:  Who knows? (another question) Every week brings new challenges.

Most recently: Can I receive my retirement early? (to help pay for my care -- our out of pocket alone was almost $30,000 last year)  Can we find a reclining shower chair since I can no longer sit upright very well? Is it time to go to Hospice care?  How many doctor appointments do I have this month?  How can we get an Eyegaze speech generating device? (Which are tens of thousands of dollars, and our insurance denied us twice) Big break here!  My sister connected with our area ALS contact and they just had one turned in, so I get to use it!  My ability to type is diminishing day by day.  That tool will soon be my only communication.

Most importantly are these questions. How much more can my husband take?  Working full time (from home as much as possible) so that we can afford the thousands of dollars not covered by insurance for my care, and to keep our daughter in her last year of college.  Watching his life partner get weaker by the day. How are my children handling this?  They aren't going to tell me, I know.  But are they telling anyone?  How are they getting support?  I have no control over these questions.  These are the questions weighing on me.  In my head and heart I am still a wife and mother, even though I can no longer act in those roles. Who will do the things I had planned to do for my children when they get engaged, married, have babies?  Who will have the "mom" talks with them?

Questions, questions, and yet more questions.  This is when I turn to God.  I cannot control everything -- even though I have always tried.  I may not be able to stop the questions, but I have to trust Him to take care of the answers, to take care of my family. If you are reading this blog, my question for you is, will you pray for my husband, my children, my sister (who is helping care for me)?

Lastly, when will they find a cure, so that no other family has to go through this experience?