Sunday, March 10, 2013
Ali dressed as "Fancy Nancy" for Read Across America Day...
Well, with one talent show in the rear view mirror, miss Ali set her sights on playing piano for tonight's Talent show at church.
So, we tackled a little Beethoven:
A great, familiar melody that is easy for kids to learn. I wrote out the score and put the finger numbers under each note so all she would have to do was play the numbers and the melody would take care of itself. Yes, that is a big cheat sheet, but when you are 6 and you have 9 days to prepare, and you haven't touched a keyboard since October, IT WORKS!
Ali was super nervous, and mommy and I just kept reiterating, "That's perfectly normal and natural, honey." We don't want her associating that there is anything 'wrong' with being nervous. That would just compound it! I played a memorial service yesterday which I got called on Monday for. The piece that I was to play and sing wasn't decided on till FRIDAY, and it was a song I had never heard before Tuesday. YIKES! It was "Beautiful," by Gordon Lightfoot, and the vocals are incredibly idiosyncratic, meaning Gordon plays around with the vocal rhythms a TON. This wreaks havoc on the right hand, whose job it is to lay down the steady pulse/rhythm for the entire piece. I was so nervous my hands were sweating like mad! I shared this story with Ali, and again, she couldn't believe it!
"Your HANDS were sweating??? How is THAT even POSSIBLE?" She said, bursting into laughter.
You know, most of the things we fear and are nervous over really aren't life threatening, so for me, the key is to be aware of my fear and anxiety, and then go act anyway. This is what I'm hoping will stick with Ali. As you saw from the video, she did great, the goal is for her to internalize that each time she was nervous, she still did great and came out the other side a winner... in this case meaning she played great and got a giant round of applause... reinforcing that support. Good stuff.
Ali and Julian at our library celebrating Dr. Seuss' birthday...
Work is going really great right now for Ang and me, meaning we have more of it than we can handle, but on the flip side, I have to admit that we have had little time and energy for PUCK. We've spent a lot of time effort and energy raising money for the past two years, and we're running out of gas. When I did the math at the end of 2012 and realized that collectively between the 4 EB charities, we'd raised just over a million dollars for Dr. Tolar in 2 years, I metaphorically collapsed, because that was the original number he asked for. I felt like I had crossed the finish line of a marathon, and I fell apart. There is a sense of completion... which is really messing with me, because we are in year three of a three year plan, and our goals for this year are the most ambitious yet. There's much to do, and I am struggling to find the energy to do it.
That makes me sad to read.
It's a conundrum.
As the grief journey continues through time, one of the pieces that messes with me A LOT is this feeling of becoming further and further separated from Bella through linear time. One the one hand, the pain is receding through the process of steady and continued grief work (I still talk with a spiritual advisor 4-5 times a week), but on the other, I just feel further and further from Bella. Because pain and anxiety (inside me) were a part of every day of her life, I can't unravel if I am feeling further from that, or further from her.
I remember this awful feeling after my dad died...
... the feeling of 'feeling better.'
It's the worst!
First, I felt bad. Then I started to feel better. Now, I feel bad for feeling better! It's a vicious circle! Ever experience that? Yuck. It's as if the feeling bad is a measure of how much I love Bella, and if I feel better, I'm somehow "getting over" her, and no longer loving her. I know this paradigm traps A LOT of bereaved parents. I've heard it first hand on the grief retreats through the years. It's all wrapped up in some self created guilt, which is totally unnecessary, but MAN, it feels real!
I am still sad.
I do still love her.
But, it is not as painful as it once was,
and honestly, the wonderful present and future are CALLING.
I KNOW that Bella wants us all to move forward and seize the amazing gift of life we have to the fullest, since we are lucky enough to have it in the first place. I also know that if the roles were reversed, the feelings would be the same. Seize the day. Seize the life you've been given, because for so.many.people, tomorrow won't follow today. My journey with Bella, and my work at the hospital reminds me of this truth daily.