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.


  1. Every day I hope that Bertrand will become super-fantasy Bertrand or fantasy Bertrand. Even if such things never happen, he's brought so much joy to my life as well as so many others. He is super-fantasy Bertrand for that alone, an incredible baby boy that has already beat the odds! I love you guys!

  2. I don't think people understand how different it is when you raise a child where you have to not plan for the future just to protect yourself from the pain of, well, you know. Our kids are of a very unique "super-fantasy," a fantasy where each good month is such an amazing feat of super strength and heroism and each little gain is equivalent to defeating the bad guy in battle.

  3. I think your optimism and strength are amazing. I'm happy you're so happy lately. And I'm angry at the doctors who told you he wasn't going to make it even though they don't even know what he actually has. Go Might Team!

  4. Super Fantasy Elizabeth is a mom one tenth as awesome as you.

  5. I agree about the fact that others, no matter how close, just don't understand. I am thrilled beyond words if Cole has less than 20 falls in a day! When I say he's had a good day....it really isn't "good". Yet, just because some days are better than others; it totally doesn't mean that he'll be using sentences or attending school or heck-even going OUTSIDE any time soon. It's a crazy world we live in, I think that we have to be a little crazy to survive :) Bring on the fantasy!

  6. Cristina, I just read this post. It makes me feel happy and sad at the same time, inspired and devastated. I can't even sort out my thoughts, but I'm sending you and B a big virtual hug.

  7. Well said. Really well said. Your insights are profound.

    "slathered thickly with my optimism" - like how you phrased this.

    I think even those who cannot understand have good intentions; are trying to affirm you in your optimism as opposed to tear you down to a perceived reality.

    Bertrand is most fortunate for your love and care. Barbara