Sunday, September 8, 2013

Bravery According to Lu

A few nights ago, Chad said he was proud of me and my blog and how long I have been writing it.  In November it will be two years since I started writing. I am proud of myself too. Something I am also proud of is in these past two years I have not needed to increase the dose of my anxiety medicine, I have not started smoking again, and I have not once drowned my sorrows in Clarion River Red (my favorite wine). All of those things have of course crossed my mind [often], but my medicine is fine, I don't have time to smoke (among a zillion other reasons to not smoke) and I cannot bring myself to even have one glass of wine in the event that Lu needs me. I must always be alert for her, I believe. So, I have been a person who leaned on vices in the past, but not now, and I am proud to say I have bravely traversed this whole life-changing situation sans crutches. 

On our way home from New York last week, as we crossed the Tappan Zee bridge and were finally leaving the wretched city, I said to Chad that I feel so proud of us for taking Lu to Dr. Sasha and going to the city to give her what she needs. It makes me feel brave and it makes me think of quotes about bravery and what is often said about being brave...I'm a real sucker for quotes:

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” 
― Nelson Mandela

The first time I was told about Dr. Sasha and heard she was in the Bronx I immediately thought, "Uh, no. That's absurd, we are not going there, no way, no how." And now, it's barely an issue, we just get in the car and go, no big whoop. So, even though we were terrified, we did it. That's being brave the quotes say, and I agree.  And I often say that Lu is the bravest girl I know because how could she not be afraid of some things, but she still just carries on. I have been thinking over this past week about what is even braver than that about Lu. What I truly think makes her the bravest person I know is that she is happy, even though she has plenty of things she could be sad about. That is brave. 

“It is hard to be brave, when you're only a Very Small Animal.” 
― A.A. Milne, Winnie-the-Pooh

Lu IS just a Very Small Animal, but she acts braver than most Very Big Animals I know. She acts braver than me to be honest. And, quite frankly, I believe that a great deal of the bravery I muster up each day is inspired by...and demanded by...Lu. How can I wallow in grief when she sits beside me smiling?  I have known people in my life that have been sad about, what appeared to be, nothing. I have been sad about nothing.  But instead of being like, "Oh boo hoo, whoa is me, I can't do things just like everybody else! Wahhhh!" Lucy says, "This isn't how the other kids do it, but I'm still doing it! Hooray!" 

In these two pictures Lu is wearing a baby doll sling I got her on Etsy so she can hold her babies. This isn't how she would "typically" be able to hold them, but it's better than not holding them at all! 

Here Lu is coloring some thank you cards for generous contributors to the "Sometimes it's expensive to be Lucy's parents" fund (which isn't a real thing!). She's sitting in her special chair, using her cuff, and is still happy as pie. 

"I’m not perfect, no I’m not
I’m not perfect, but I’ve got what I’ve got
I do my very best, I do my very best
I do my very best each day
But I’m not perfect
And I hope you like me that way"
-Laurie Berkner

 And this is her usual morning face.

“A kind of light spread out from her. And everything changed color. And the world opened out. And a day was good to awaken to. And there were no limits to anything. And the people of the world were good and handsome. And I was not afraid any more.” 
― John Steinbeck, East of Eden

I often wonder how so much strength and optimism can be inside of such a little girl. Imagine for a moment how we might behave if we were dealt the hand Lucy has been given. What if we were trapped inside of our bodies like she is? I feel certain that I would not be likely to behave well. I realize that life has never been different for Lu and that she doesn't know any other way, but she can see what she cannot do, and she can hear what she cannot say. But, she still gets up each day with a smile and gets on with it. One of the greatest gifts I believe I can give her as her mother is to do the same. 

“What's the bravest thing you ever did?
He spat in the road a bloody phlegm. Getting up this morning, he said.” 
― Cormac McCarthy, The Road

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