Would you all care to join me in thinking the unthinkable for a moment?
read a thing, a while ago, by someone with a severely ill child. She
wrote that most people in that situation had a Plan A and a Plan B.
Plan A is how you are going to provide for your disabled child if you die before them.
Plan B is what you are going to do if your child dies before you do.
No-one should have to make these decisions, should they? But we are.
got Plan A more or less sorted. Life insurance, guardians*, letters of
wishes, all of that. It's nice to feel that it's all tied up and it will
all become Somebody Else's Problem if we both cark it suddenly in a
Statistically Unlikely Electric Blender Incident or similar.
Plan B and I'm fucked.
Plan B varies from day to day, swinging so wildly from one end of the spectrum to the other that really, there IS no plan.
part of me thinks that we will just trundle along as we are. Same
house, same routine, same work, same school for Leo. Routine, Routine,
Routine. Good for us, good for Leo. He'll need stability, he'll need his
friends around him, WE'LL need the same. My mother, my sister. People
to lean on when we sit at the top of our metaphorical stairs, sobbing
too hard to be able to descend them and start our day.
other part of me is planning a Great Escape. Drop everything that can't
be fitted in to the camper van and leg it. All our roots, all our
books, all our bedding and the tea-spoons; all the nik-naks of our past;
shared or pre-marriage. Freecycle the fucking lot and drive off in to
the sunset. Take Leo out of school for a year or two. Circumnavigate
Europe. Attend mass in St Peter's Square and dance on the bridge at
Avignon. Travel the Silk Road to Saamarkand and see Tamburlain's grave.
Spend six months walking the Camino from Vezalay to Santiago de
I am flailing. I can't see where we're
going and I can't see a way out. I feel like every aspect of my self and
my life is being squeezed in an enormous vice - there's no way out, no
way back, no alternatives. All I can do is move forward, squeeze through
each hour, each day, each week.
How can we work out a
Plan B without knowing how long we've got? All we can do is go from day
to day and try to keep all the plates in the air. And when we get
there, we just have to hope that we'll know what to do.
What would you do?