April 12, 2010
Real Bertrand vs. Fantasy Bertrand vs. Super Fantasy Bertrand
Every once in a while, I'll have a conversation that shocks me. I had one such conversation yesterday but it has taken me until now to wrap my head around how the other person may have reached that view point. As any parent in my situation quickly learns, no one (no matter how close a family member or friend, no matter what kinds of other loses they may have faced, no matter how well intentioned), no one understands what I am going through like another parent in a similar situation. (I love you, Carrie!) Still, sometimes I make the mistake of assuming that friends and family understand more than they actually do--which results in shocking conversations like the one I just had.
I have a tendency, whether genetic or out of necessity, toward optimism. This blog is slathered thickly with my optimism. Well, what happens when someone takes my optimistic vision and layers it with their own (medically-uninformed) optimism? You get Super Fantasy Bertrand! This Bertrand is a pretty amazing guy. He'll be a mischievous older sibling, cook, read, attend normal school and then college. Heck, he even has a shot at winning a Nobel Prize like his namesake. I was shocked by how specific and unrealistic (at least if you've ever attended one of Bertrand's doctors' visits) this Super Fantasy Bertrand was!
Contrast this Super Fantasy Bertrand to what would be my Fantasy Bertrand. My Fantasy Bertrand would be lucky enough to live to his mid to late twenties. He'd use a walker eventually but likely need a wheel chair. He'd wear diapers and probably still need me to feed him. He'd really enjoy his special education! My Fantasy Bertrand would learn how to use a communication device and someday call me Mama! He'd stay my beautiful, happy baby no matter what and would die a hopefully painless death due to his leukodystrophy (white matter loss) and organ failure. This would be my Fantasy Bertrand--if I should be so lucky.
But Real Bertrand doesn't need to be like Super Fantasy Bertrand or Fantasy Bertrand to be a pretty amazing guy. To me, he already is. I couldn't ask for a braver little warrior. That's why I don't waste time thinking about a Fantasy Bertrand (much less Super Fantasy Bertrand). I love my REAL baby boy each and every day for the person he is. And, I hope everyone else will learn to do the same.