Wednesday, January 9, 2013


Lately, my girl is wow'ing me in a new way.  With her perceptiveness and self-awareness.  Way back when she was being assessed for the school district's pre-school program, I had a conversation with the neuro-psychologist who evaluated her . . . she said it was amazing how aware of her own challenges Sammie B is, and that that awareness is part of what often makes her timid and afraid of trying new things.  She clearly knows what is hard for her, she knows that because of her articulation, she is difficult to understand for new listeners, and that stuff . . . stops her from trying sometimes.   That hurts my heart.  It does.  Striking a balance between letting her be just who she is, exactly as she is, and pushing her just to the edge of her comfort zone, but not too far, is really a struggle.  And, lately, as my girl continues to show me just how self-aware and perceptive she is, that conversation with the neuro-psychologist keeps ringing in my ears . . . and I keep thinking about how to strike that balance.  How to be the mama that she needs.

A couple of months ago, Sammie B and Mia were both standing in my room.  Sam was using my bed for support, Mia was just standing there.  And, Sam fell.  She just lost her balance, and fell.  And cried.  I picked her up, kissed her head and said, "you know what, I'm so proud of how brave you are, because I know that standing is hard for you, but you still did it."  And, then she asked me a question I just wasn't prepared for.  I knew these questions would come, but I guess, I didn't expect them yet.

"Why?" she asked. 

Caught off guard, I said, "why what?" and she asked me, "Why is standing so hard for me?"  And with my heart just crumbling inside, wishing my girl didn't have to wonder why her body was failing her, I explained that her body is just made a little differently, but that's okay, and that everyone has some things that are hard for them and that they have to work a little harder at, and that even though those things are hard, sometimes we just find different ways of doing them, or we find things to help us do those hard things and together we went through a list of the things she can use to help her stand . . . my leg, my bed, the couch, her walker . . .

That conversation is one that I've played over and over in my head, and wondered, how often does she wonder those things?  Does she watch the other kids on the playground running and climbing with ease and wonder why?  And you know what?  Those thoughts are almost too much for me to bear. 

That's always been how we "explain" Sammie B to her or to other kids (we've had other kids ask "why" Sam can't do certain things) -- that "her body is just made a little differently."   I've never labeled it as "cerebral palsy," or "CP" to her, though of course we talk about it in front of her at times.  So, today, when someone asked me in front of Sammie B if another child we know "has CP too," and I said, "yes," and Sam said (with glee) "JUST LIKE ME!," I was again - taken aback.   She is listening to everything.  She is so perceptive, so aware of herself.  So amazing.

If I could make the "hard" easy for her, I would, in a second.  But since I can't, we'll continue to navigate these waters, trying to find a balance between pushing and just letting her be, just as she is.   Helping her continue to understand who she is, why things are (even if we'll never be able to answer that ultimate "why" and even if it is one we'll struggle with ourselves from time to time), and that, most importantly, no label defines her, or what she will do.  CP or not, the sky is the limit.  Even if on the way there, we have to find different ways of doing some things.

Cheers to you, Sammie B.   Everything about you.  Just as you are.  I can't promise I'll always balance it all perfectly, but I promise I'll try.  May I somehow manage to instill a confidence in you to try new things, while at the same time, always making sure you feel safe.  May I never push too hard, but do everything I can, everything you need me to, to enable you to be your best self.  May I always be the mama that you need me to be for you to reach your fullest potential.  To reveal your destiny to this world.  May you always feel me next to you (even if I'm not actually right there) cheering you on.  For in my heart, girl, the best and most important job I'll ever have is to be "mama" to you and Mia.  To be your biggest cheerleader and greatest fan.  For those things, I'll always be.

1 comment:

Cristina said...

I can only imagine how heartbreaking it must be to get asked "why?". :'( Matt and I have remarked more than once on how twisted it is that we feel lucky that Bertrand doesn't know he is different. He's just happy. Both Sammy and Mia are lucky to have a mom who will cheer them on and support them no matter what. :) Sending you all love, hugs, and strength.