Sunday, January 16, 2011

January 16, 2011: What month is it?


Hey!  Thanks for those of you willing to de-lurk!  That was great to hear from you again!  Thank you also for your thoughts and questions.  Feel free to fire away any questions you have, we're free to choose to answer or not, it's okay!  It's great to get a sense of what you'd like to hear about.

So, in line with that, let me share a little about some of the more common questions that came up before getting into other fun!

1.  I have offered to Ang more than once to guest blog if she wants to.  Maybe enough of you will call her out often enough that she won't be able to refuse you, because she has little trouble refusing me!  LOL.

2.  Children... good question!  Boy, watch how depending on which lens we look through changes the complexity of that question...

Lens 1:  Thinking about it:  Boy, there is a lot to think about with this question.  I mean, we have a 25% chance of having another child with EB.  If we have another child with EB, would we go through the transplant with him or her as an infant again?  What if we tried in vetro and tried to control for EB?  How many embryos would that take?  What would happen to the EB embryos?   What if we selected an EB free embryo then miscarried, or the child had some other deformity?  Ugh.  So many different scenarios to think about.  It actually hurts my brain just trying to articulate them!

Lens 2:  Praying about it:  Well, that's easy.  God has a plan.  If another child is in it, so are we.  Our faith in God's Providence is unconditional.  So, if it is to be that Ali gets to be a big sister again, EB or not, than that simply is what is so.

See, it is far easier to put that conversation in God's hands than in ours.  I know I speak for Ang in this as well because we have talked about it more than a couple of times, naturally.  See, if Bella's soul truly wanted to come through us to earth and touch it as beautifully as she did with us as her partners, who were we to block her?  The role of parent shifts vastly depending on your faith background.  To us, we were simply stewards of another soul that chose to have the exact experience she chose.  We were chosen, and we answered.   We were quite blessed to be Bella's parents.  Now, going forward, if God says to us, "Uh guys, the journey isn't over," we're there.  If he says, "You're done," then so we are.

"But that really isn't very responsible thinking, Tim, I mean, you're just leaving it up to God?  You know there are precautions you could and frankly should take to prevent such a tragedy from happening again..."

Ah, thank you, fear.

Sounds reasonable, right?

Folks, I know people who have done everything in their power to get pregnant and can't, and others who so much as walk by each other and do.  Again, the illusion of control at work.

2 lenses, same subject, radically different perspectives.  That's what makes the game of life so AWESOME!

The bathing beauty...

3.  More about Ali.  Well, Ali hit the pool today (hot tub... as you can see by the photos, the 'big pool' was a chilly 55 degrees despite it being 70 degrees out...).  I keep trying to explain that the warm air doesn't automatically mean warm water, hopefully it sunk in a little more today!  Ali actually stepped in the water and her feet could handle it, but as soon as she took another step and the water went up to just below her knee, that was IT.   She was on her way over to the jacuzzi before you knew it!

Hot tub...


Yesterday, we went to the zoo since it was down right HOT out.  We went to the local Santa Ana Zoo that is easily missed, but frankly has a KILLER family section to it with an awesome train, carousel, playground, petting zoo, concession area.  Ali LOVES the zoo.  I loved the zoo growing up.  I wonder, do you think any kid doesn't love the zoo?  Somebody tell us all a weird story about a kid you know that doesn't or didn't like the zoo growing up.  I'm sure there's someone out there (Paris Hilton and Nicole Ricci come to mind for some reason... DOH!) who had no interest in getting off the concrete and communing with animals of the wild.

Finally, Ali simply ROCKS.  Over the past few days, her ability to understand reason and logic and, in turn, follow directions has JUMPED up.  I sometimes stand dumbfounded as I explain to her why she needs to do something, and she 'gets it,' and simply stops what she is doing and follows daddy's order.  It blows my mind!  Also, again, her language skills are just keeping us bewildered day in and day out.  Today we were discussing the conundrum of spiders:  Scary looking spiders like a daddy long leg or tarantula are harmless while beautiful or striking spiders like the black widow or brown recluse are super dangerous.  She reiterated the entire paradox to mommy in the car and said, "Today, my daddy explained to me..."  She just blows her proud poppa's mind every day.

Playing Hula Hoop on the Wii Fit at Grandma and Grandpa's house!


Okay, on to the Providence Story of the Day from Friday at NAMM:

Friday afternoon, I had a couple of hours to myself between video shoots to explore NAMM.  What a gigantic universe to explore!  Too much to try in one afternoon.  It is so big, and there are so many booths that have artists visiting all day over the 4 days, that the odds of running into any of my heroes during my 3 hours set loose were pretty slim.  No worries, I figured I'd just try to at least get all the way across the three floors, three hotels, and so many millions of square feet there were to see at least once.

I literally ran straight into Blake Lewis from American Idol along the way...

Well, then, I stumbled upon the Ernie Ball booth...

Two of my guitar heroes play Ernie Ball guitars.  One of them, Steve Morse, is the reason I am a music therapist, and as such, is the reason that I had the honor of being the soundtrack of Bella's entrance into earth, and entrance into heaven.  See, when my 5 best friends were murdered in 1995, I went to a Steve Morse concert the night of the 5th funeral in 4 days.  I played a song for all my friends' funerals, and it helped heal our small town, but it tore me up.  However, when Steve was on stage, I was at peace for 2 hours... and for the first time since I got the news a week earlier.  At the end of the show, I told him that.

In that moment, what I provided for my community came full circle and it provided the same for me...

Behold the healing power of music.

It was in that moment that the purpose of my life was revealed:  to heal the planet with music.

I have been at it ever since.

In 2003, I saw Steve play a show in Tempe, AZ, and reported to him that I had started a heavy metal band that was spiritual for dark kids to help them find God in their own way.  One night, one of our fans was going to kill himself in his room.  Our CD came on in his CD changer (it was on shuffle), and he thought about how disappointed my singer and I would be if he killed himself, so he didn't.  The fan told me this story himself many months later.  Well, I shared this story with Steve to let him know that I was not only with that boy in that moment, but so was he.  He just hugged me, and said, "Yeah man, that is the power of music!"

As I walked through the booth, I saw the Steve was scheduled to play on stage in 45 minutes.

I knew he had to be around.  I could see other famous guitarists and bassists literally milling about the booth.  I knew he was there.  Sure enough, I found him practically hanging out by himself.  I waited for him to finish the conversation he was having, and then gave him my 2011 update.

I gave him my business card - now a board certified music therapist - and explained how he was once again with me as I sang my daughter both in and out of this world.

You can imagine at this point, after refreshing him on the backstory, he was a little overwhelmed by it all.  He could barely even look me in the eye his brain was so completely blown over the fact that it was "your own daughter????" as he said in his words.

"Man, you have GOT to share this story.  People NEED to hear this.  Figure out a way."

I told him I would, and that I looked forward to finding him somewhere in the future, and reporting on my progress.

Me and Steve Morse...

Folks, has someone steered you onto your present track?  Has it been a while?  Do they know the heights to which you have climbed along the way on your journey?

Go back and report to them your progress.

Sometimes you never know
How far the ripples go
When you throw yourself into
the pond called life.

Sometimes you never know
How far the ripples go
But you throw yourself back in
again and again
with a smile.

God night.


  1. the story...and love the fact that you were able to find Steve and share Bella with him.
    We had plans to go to the Zoo today; however, Christian is still not 100% over this flu/cold. We left the house to go grab a late lunch today with friends, and quickly returned home for him to rest. could you NOT love the zoo! My favorite is the...I call him...the 'blonde monkey'...LOL..he swings, and swings, and swings, and swings...then stops to look at you...then keeps on swingin'! sooo funny!
    Ali is a doll and is so 'matter of fact' that girl!
    Well, we'll all need to plan a play day very soon...maybe even a 'kids eat free' dinner night...sounds good to me!
    always in our thoughts and prayers,

  2. free dinner! I'm totally inviting myself!
    SAZoo know family pass is only like $59 ....they have a fun Halloween night there!

  3. Love "Lens 2"...

    I vote Ange does guest blogs when you are too wiped out...missed you these last 3 days! Amazing how I start my daily devotion and my Bella's Blessing and if I don't do one or both it just doesn't seem right!

    Glad you had a good trip! Donna in NJ

  4. Tim -- I got to your blog via Jonah's blog. I don't even remember how I got hooked up with Jonah's blog. But I do know that I didn't have a clue about EB until then. But now I do. And I think about EB daily. And I decided to "dr-lurk" at your latest request. :-)
    Rita in North Carolina

  5. Thanks for the Ali update. How old is she? I'm sure I could find it if I had more time, but as a college student with 2 jobs... She reminds me so much of my 4.5 year old cousin!

    Mary in PA

    p.s. It made me laugh that Ali was swimming in the middle of January. Here it's 23 degrees with several inches of snow on the ground, and an ice-storm on the way...

  6. Loved the pictures from the zoo. Looks like you guys had a ton of fun. That's awesome. I missed you these past few days. I'm glad you are back. I think Ang should do guest appearances every now and then. That would be fun.

    I am so glad that you had so much fun at the NAMM show. That is so cool how you ran into Steve Morse. Awesome!

    I love the picture of you and Bella reading together. She actually looks like she is reading too.

    Lots of Love,
    Amber, Craig, Malorie(2yrs), and Liam(1yr)
    The McLaughlin Family, CA

  7. This was the greatest post! Thanks so much for sharing everything!

    First of all.... I love the thought of another child, I wondered that myself for you guys. You have SO much love to give! Have you ever thought about adoption?

    Second... Awesome providence story!

    Third... I'm SO SO SO SO JEALOUS that you got to see Blake Lewis! I loved him on AI! What does he do these days music wise? He is talented!

    Go Ali go!

    Much Love,
    Amanda Schauer (Bryce and Corynn too!)

  8. Dear Tim, Ang & Ali,
    I am "de lurking" to share with you that in region of ND I live in it is -5 and I would have loved to sit in the hot tub with Ali!!! It is way cold here. Hope you have a wonderful week.

    Holly from ND

  9. To the ask-er of tough questions,

    Here's another one for you! Feel free to ignore or not answer; no hard feelings. You ask us the hard questions, so I just thought I'd throw this your way.

    OK, you now have me cruising a lot of EB blogs, and someone had a link to a baby boy in an orphanage overseas (Russia?) who has EB. Apparently, he was abandoned and has never left the hospital. The link asks for donations, but ultimately is looking for an adoptive family. Since I read it, I've never found it again. Have you heard of this little boy? AND, would you bring him home???? (Again, feel free to ignore this question if it's offensive, hurtful or just wrong in some way).

    If I were married (i.e. had a spouse with good health insurance), I would seriously consider it. I live right down the street from National Jewish Medical Center, one of the top "allergy/respiratory/weird skin things" hospitals in the nation. I saw a kid being treated there for EB, although at the time, couldn't figure out why the child was covered in bandages.

    You and Ang, of all people, would know exactly what it would take to bring that little boy home, and I often think of him.

    (I truly hope I haven't said anything that's hurtful!)

    On a lighter note, we LOVE the zoo too! We live 5 minutes from the Denver Zoo and go all the time. I love to take the kids on a cool, sunny winter day. The animals are usually active and we typically have the place to ourselves. My sister, though, as a kid, was sprayed with mud by an elephant at the zoo. I haven't asked her as an adult if that had any lasting effects, but I certainly remember her tears!

    Karen Steiner
    Denver, CO

  10. Can't remember when I last commented so I guess it's been a bit. Things were a little rough in my hometown after the shooting, it really hit hard and I've been a little shaken up and not myself.

    Ari is learning new words every day right now and loves books. He also loves animals and we are hitting the local zoo tomorrow with my mom; I grew up a couple blocks away from it (Reid Park Zoo) and have many fun and sweet memories there.

    Love reading about Ali. Glad you had an amazing time at NAMM. I would LOVE to see Ang do at least one guest blog. She is amazing and I am so lucky I got to meet her and hear her speak in Phoenix at Bella's gathering. I'd love to hear more!

    Cara in Tucson

  11. Wow - what a lot of great stuff! Love reading the Providence stories - God is at work!

    Ali blew my mind at the TX gathering - she was so poised and obviously a very thoughtful child. And that was when she was in the midst of fresh grief and a LOOONG roadtrip. I can only imagine how even more wonderful she is now that she's had some time to get into her "groove." Yay Ali!!

    We are all still praying - thanks so much for sharing your lives with us. And of course for all the sweet Bella pictures too - they ALWAYS make me smile!

    Love from TX,
    Laura (for the Team)

  12. Wow, I really envy Ali, enjoying all that sun. It's in the 20-30's here with rain to snow showers.
    I'll be praying for you guys. It must be scary even thinking about having another baby. Not so much having another child with EB, but the fear of having to face all the pain, especially when you are still in the midst of it. It is definetly easier turning it over to God. I am dealing with some things right now, but finding it hard to let go and let him take the wheel. I'm trying. I have always been the one in my family that takes care of every one elses problems, personal & financial. Now, the table has turned and it is very difficult for me. Thank you for the inspiration.
    love & prayers
    carla spradlin