I recently read a blog where a woman explained to a friend how it feels to live with a chronic disease as they were casually having lunch at a cafe using spoons. She has called her explanation "The Spoon Theory". (Read her post here or you may find that the rest of this post may not make much sense.)
It was an "ah-ha!" moment! Suddenly I had words! I had an analogy I could share with family and friends who don't quite understand why a trip to the park is OK one day and not the next. Why a dinner invitation is sometimes readily accepted and other times regretfully turned down.
My daughter battles a horrible disease every day and I manage her spoons.
When she wakes up every morning I analyze the way she walks into my room. I listen to the tone in her voice when she says "Hi mom!" I look at our schedule for the day and how many appointments we have at what times of the day. I count her spoons.
Some days an extra long wait time at a doctors office will rob us of a spoon. Sometimes a late lunch will take a spoon from us. Back to back therapies will cost us several spoons.
At times I see her opt out of running and playing with other kids her age. Sometimes she comes to me during a family party to tell me she is overwhelmed and needs a quiet spot. Other times she quietly puts herself to bed two hours early. It is in these moments I realize that she is growing up and learning how to manage her own spoons. I am proud of her but hate that she has to live with a disability that keeps her from the endless supply of spoons her peers seem to have access to.
Some days I will miscount her spoons. On these days I give her one of my spoons.
These are the days I call and cancel that lunch date I have so been looking forward to. On these days I toss my list of errands out the window and rush to get her home where she feels safe and relaxed. Some days my house bears the mark of my "spoon giving" as piles of laundry remain undone, dishes sit dirty in the sink, and my phone remains unanswered. I earn the label of "unreliable" or "flaky" as I give up spoons I usually reserve for service to my community and church. On these days I just hope that the people in our lives will still love us and give us another chance because although we may look like the average family, we are "spoon juggling". As much as I hate to admit it I just can't do it ALL.
I am the mother to a child with special needs. I manage her spoons.
