Sunday, March 10, 2013

March 10, 2013: Movin' On...

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.

Seize TODAY.

God night.


  1. beautiful and wise words Tim. Always a pleasure to read your posts. You lift my spirits and make me put things in perspective. thank you Tim, thank you Bella.
    christiana, cyprus

  2. The beauty of your conundrum is that while you can't physically see Bella anymore, she is still and will always be with you and she will move forward WITH you. You did all that you could do for her while she was living and that is all that any of us can do. Don't feel bad moving on (or forward or whatever you call it)...look at it as moving one step closer to seeing her again someday.
    God has a purpose for you and your family and there is nothing wrong with creating the best life you can for yourself and for them while you are here. You are doing a fantastic job...keep it up :o) You will love her forever and that is what matters!
    Blessings from Kelley in MO

  3. It's wonderful to read how you are all doing so you know how Daylon is? There aren't many posts about Jonah, Daylon or from Courtney.

    Thank you for continuing to share Bella's Blessings and your successful journey through life.

  4. You can be proud of your process on this long and difficult journey. You do have the right to feel better, you have a family to enjoy and to watch them growing up.

    You had a beautiful daughter-nothing can change that.
    You did everything for her you could-and nothing can change that.
    She has changed lives of people all over the world and she made it and the people within better. Nothing will ever change that.
    I don't know anybody, in whose name so much money and awareness was raised in such little time.
    But nomen est omen: her second name, Claire comes from clarus, which means famous in Latin.

    So, life IS good, as you say. :)
    And I hope my comments give back a fraction of what you provided to me, to all of us here.

  5. people have been surviving the most horrendous losses since time began.They have found a way to continue on and for centuries there was no such thing as grief counseling.Maybe this is how the Creator created us--its a natural part of our humanness.How else could we remain standing.Tim you will never "get over" the loss of your little girl but i think the natural order of things is that we can "remember" the fun times the times that made o
    us smile.we can also talk about our lost ones without screaming out the SOB that's in our chest.You and
    d Ang are doing a great job. Go easy on you.Hmmm waffling away there but i know what i mean!!!!!

  6. Tim,

    An amazing post from you. And may I say what wonderful comments you've also received from some lovely readers. Bella's Blessings is still a place to come and celebrate Bella and her amazing family.

    My rooftops are mossy but I send you a glorious whooping yell of love and best wishes from my perilous perch - for carrying on, for knowing what is good in this world and for sharing it with all of us,

    Much love to you, Ang, Ali, Bella and Julian,


  7. There will never be a doubt that you still love and miss Bella. You do not have to give every moment of your life to her memory. Enjoy the life God has given you and the wonderful people in it. It is a balance that takes time to find and adjust to.
    Thank you for sharing your beautiful family.

  8. This is so great. And SO TRUE. Thank you for writing it. Bella is so lucky to have you both as her parents, and Ali and Julian too. Life is a gift! MUCH LOVE.