Sunday, July 15, 2012

July 15, 2012: Gratitude...


Phew, it's 10:34pm and I'm just getting to the blog.

I'm beat.

Fun in the sun this evening at the concert in the park with Grandma and Grandpa should have all of us sleeping well tonight!  Thank you, grandma, for inviting us!  It was a lot of fun.  Princess Ali even said at the end, "That was actually fun!  I thought I was going to be bored."  She's been a tough one to please lately, so I'm glad it made her happy.

There was a moment when I was lying on my back listening to a mixture of WWII era swing music in the background, and my kids' laughter in the foreground.  I was looking up at this tree, with all its leaves high above.

I was happy.

Genuinely happy.

I looked at Julian crawling around without any impairments, and felt a momentary tinge in my heart.   I thought how Bella couldn't do what Julian could.  I thought how we as a family back then couldn't do what we were doing tonight.  I wish there were deeper words to use than this, because they seem inadequate, but I was SO GRATEFUL that I could be living the moment I was living, right then and there.  If you had told me two summers ago when I was holed up in a 10x10 room fighting for my daughter's life that this is where I'd be two summers later, I might have hit you.  I would not have thought that this is where I'd be, and that if it were the case, that I'd be happy to be there.

I know in different laps around the grief track in my life, I have felt guilty for feeling good again after a loved one died.  This was particularly the case after my dad died.  Compared to my 5 best friends being murdered two years earlier when they were all in their early twenties, my dad dying in his seventies at home in hospice with Enya playing seemed pretty natural and cool.  Sure, I missed my dad, but his passing was much easier to take, so I felt better 'much quicker.'  That threw me of course, because then I wondered if I loved my dad as much as my friends since I was better so much sooner....

...ever chased that tail before? ;-)

Anyway, WHO KNOWS what God has in store for my family tomorrow morning or five years from now.  All I know is that today, there was a window of happiness where we were all there together, in that same place at that same time, and we were all happy together.

Thank you, God, for that gift.

I know that this too shall pass, but thanks for letting it pass our way in the first place. ;-)

Role Reversal:

Two summers ago, while trapped in that room, I read countless blog comments about faith communities locked in prayer for Bella.  Last night at a small group session, and again today with our whole congregation, Ang and I got to offer up those same prayers for Charlie Knuth and Jackson Baldwin.  It felt great to be on the other side of that coin paying it forward.  Now, I am still at square one with prayer, but after reading Heaven is Real on the way to MN last month, I'm willing to believe that some prayers get answered in the way we can see and understand them... like directly.  It was hard reading that book.  Not gonna lie.  I sat there and felt like asking God, "So, were all the people praying around the world around the clock for Bella not praying hard enough?  What were we doing wrong?  Tell me so we can get it right next time."  I felt like a prayer failure.  I remember being afraid to prayer for a miracle when Bella was born.  Who was I to ask for such a thing?  What made me and my request any more urgent than the millions, maybe billions of prayer requests God was receiving?

I just heard God in my ear answering as I was just writing.  He said...

What makes you think I couldn't answer all 1 million prayers that day if I wanted to?  Do you think that  there is a hierarchy and a quantity to how many prayers I can answer per day?  Like a quota?  Why did you think you weren't worthy to be first on my list 'that day,' or any day for that matter?

Man, He cuts right to the chase.

Alright, then.  [clearing my throat]  God, I pray that you heal Charlie, and that you protect Jax from any harm during BMT.  I ask this of you.  Please, God.  Please protect them both.  They are precious.  They are your children, and you ultimately know what is best for them, but from this precious child of yours to you, please guide them to safety, health, healing, and happiness.  Amen.

God night.


  1. That's a new Bella pic for me!
    I thought I had seen them all!!!!

    Goodness Julian melts my heart...a year ago, I was anxious to take his first pictures...and now, his first birthday pics!!!

    Been thinking about Charlie a lot lately, and now Jax...

  2. Cutie pie much personality in her photos! Doesn't she just warm your heart? Your pain at missing her must knock you over sometimes.....I'm very happy to read about the good moments you are blessed with. :)Kim

  3. I know God can heal miraculously without any medical intervention. I also know that He can heal with the medical community's intervention. I also know that He heals through the ultimate healing where there is no more pain for that person here on earth. I will TRUST Him and His Wisdom.

    I am thankful for people like Dr Tolar and Dr Wagner who won't give up because of discouragement!

    I too am praying for Charlie, Jackson, and Sahar.

    Isn't it great that God understands our emotions of grief, happiness, disappointment, etc since He created with emotions. So thankful.

    Kim M
    Waterford, MI

  4. Yes. Prayers every. single. day for those two AMAZING boys! Your experience and pain with BMT has paved the way and made the road a little smoother for these two guys; the doctors know more today than they did 2 years ago because of Bella. This proceedure is better and safer now because of all you went through.
    You and Bella have made more of a difference in your short time together than most of us will given a lifetime on this earth.
    Im so glad that you had such fun this weekend with your family...that is what it is all about :o)
    Kelley in MO

  5. I still love reading your blog. I appreciate your insight, it makes me think more deeply. And your kids are adorable!

  6. Hi, Tim and family....

    I'm still here, reading and following your story. I'm thankful for the gift of happiness that you're experiencing right now. You beautifully show us the dark clouds along with their silver linings. May your summer continue to be filled with joy and good times!

    Be blessed, sweet family...

    A friend in NC

  7. christiana (cyprus)

    wow, I am shedding tears right now, tears of joy, because you have said you are happy. I have been reading you for so long, and never did you say you were happy. always grateful, yes, always accepting, yes, but happy? You deserve to be happy. You and Ang, and princess, and Julian. You do. Thank you Tim, for keep inspiring us!
    God bless you All


  8. What a fantastic picture of Bella!

  9. Hey - I went back and re read the days before BMT and the days leading to Bella's getting her wings....It was different reading them after following your blog and getting to know you a bit more than it was when I read it as it was happening. Same result, lots of tears, lots of frustration that Bella went through so much.

    Keep fighting to find that cure!! We will be writing (or continuing to write) the cause into our charity budget. Kim

  10. I have been reading your blog since you were in MN doing BMT with Bella. We have a healthy 7 year old girl, a 4 year old girl with a genetic disorder causing developmental and medical problems, and a healthy 7 month old boy. Although not the same situation, your story resonates with me. I am a psychologist and have worked with music therapists before, and I deeply respect your work. Do you have training in DBT? Your approach sometimes sounds like you have done DBT work.

  11. I love the rainbow behind you and sweet baby girl!