Brrr...

 

 

 

Brrr!  It’s cold.  I broke out my long underwear this morning.  My toes feel like ice cubes.  January is not my favorite time of year.  As the mom of a medically fragile child January and February were such a struggle. 

As you can tell, I don’t particularly like cold weather and I hate being cold.  Because Maddie could not control her body temperature, winter was a huge problem.  The rule implemented by her neurologist was if it was 10ᴼ or below wind chill, Maddie did not go outside.  Unfortunately the rest of the world does not operate by that rule.  If she was in a school system that provided a nurse, she was without a caregiver for the day.  I, of course, still needed to work.

Snow added even more complications.  Wheelchairs and snow are not a good mix.  Having clear pathways was essential to life.  At times we lived in apartments where snow removal was provided.  However, that usually meant a narrow path done with a snow blower leaving a thick coating of snow.   Thankfully I like shoveling snow because I was out early widening the path to wheelchair width and clearing the snow coat before it turned to ice. 

In addition, Maddie, with her low immune system, struggled to stay healthy.  A cold often lead to pneumonia and in activity seemed to increase her urinary tract infections.  So trips to the doctor and hospital increased. 

So what wisdom do I have about surviving the winter?

First, stay in the moment.  I am easily overwhelmed and that just makes it impossible for me to function.  So taking things one at a time and not thinking about the list of yet to do’s, helps me from creating crisis.

Two, always have a plan B.  That is not nearly as easy as it sounds, especially when it comes to being without a caregiver.  I have never had a nursing company willing to send a nurse on short notice or even have a back up if the scheduled nurse calls off.  Ahhh!  I kept a mental list of people who might be able to come for an hour or two.  If I couldn’t work a whole day at least I could teach a class, or get essential work done.  I alerted my students and supervisors that I would be taking any calls from the caregiver of the day.  I often worked from home or hospital bedside.   

Third, do something fun!  The stress of juggling everything got to me after awhile.  Every day I tried to do something fun with Maddie.  It did not have to long or involved.  But it had to be something that made us both happy.  Sometimes it was watching a movie together while I graded papers.  A few times I brought snow inside and helped Maddie make a snowman.  Often we would finger paint or glue things.  Once a while, we made cookies with Maddie running the mixer with her head switch. 

Forth, do something for someone else.  I know it sounds crazy when I am really the one who needed help.  But the truth is doing something for someone else pulls me out of my little world and helps me to appreciate that other people are struggling too.  So I would send a Maddie painting to an elderly relative, make a casserole for the nurse to take home, have Maddie make cookies for shut-ins or whatever other opportunity came to mind.  It worked then and it still works today!