Josiah's Journey

The dictionary describes respite as a short period of rest or relief from something difficult or unpleasant.  For caregivers, it simply means taking a break.  Usually a much deserved break.  Caregiving is difficult.  Caregiving is challenging.  Caregiving wears you out. 

I've read tragic stories of parents of special needs children who take their child's life and then their own.  How absolutely horrific.  I'm sure for anyone who has never walked in their shoes, it's incomprehensible.  We can't imagine ever feeling so desperate that we'd resort to such an extreme.  But it happens.  More often than we'd care to believe.

Think of young mothers who stay home with their children.  Caring for a a typically developing child, day in and day out, with little break from the routine gets old after a while.  I believe that's why playgroups are so popular.  Women need others to reach out to, to talk to, to share experiences with and to learn from.  They need someone who will listen. 

When I was young, my mom had a daily coffee club.  Genius idea.  The women on our street met for an hour (maybe more, maybe less) every day to enjoy a break from the routine.  They rotated houses. They drank coffee.  They talked.  Mostly, they took a daily, scheduled break.   Their children who were too young to be in school came along and played nearby.  Sometimes we played under the kitchen table, doing our best to listen in on what was being said.  This simple daily practice offered much needed adult companionship.  I believe it gave encouragement.  I believe it gave hope.  I believe it may have even saved a few marriages.  My mom and her friends incorporated respite into their lives.  Everyday.

Now think of mothers who care for children with special needs.  Same challenges as those caring for 'typically developing' children.  Times 10.  Maybe times 100.  Somedays, times 1000.   It all depends on the extent of the child's limitations.  Where are the coffee breaks for these moms? Who joins a playgroup with these women and their special needs children?  Who wraps their arms around these moms and listens?  Who offers advice?  Who offers hope?  Many marriages of families with children of disabilities crumble.  Sometimes the strain of caring for these kids is just too much.  I know.  It was for me. 

Three and a half years ago, I accepted a teaching position. It was to be the first time in 17 years that I would have days to myself.  Josiah, the youngest of our 5 children was starting school full time.  Yet, at 3 pm the Friday before the new school year began I took a job.  I dove in head first.  I spent 16 hours that weekend, with the help of amazing friends, getting an empty, barren classroom (and myself), ready to welcome 19 nervous Kindergarteners and their parents.

I worked long hours.  I brought work home at nights.   I worked weekends.  I put more energy than I knew I possessed into that experience.  Looking back, I was crazy.  Looking back, I should have spent that year focusing on breathing easy.  I should have just relaxed a bit.  But, I didn't.  I couldn't. 

As crazy as it sounds, throwing myself into something other than caring for my special needs child, no matter how strenuous the demand, was respite for me.  It gave me something for just  me.  It gave me people to be with.  People to laugh with.  People to talk to.  It gave me wonderful, dear friends who would listen when I was broken.  It gave me caring souls who would wrap their arms around me and pray for me.   It gave me an escape.

If you know someone in a hospital, bring them a fleece blanket.  If you know someone with a special needs child bring them hope.  Pray for them often.  Take them to lunch.  Watch their child for an hour or two, if it's not too intimidating for you.  Call them up and just listen.

Often times, that's all we really need.