Sunday, June 13, 2010

The Night Before Work Up...

...and all through the house,
not a creature was stirring,
not even Ali.

She was successfully run into the ground this afternoon at my friend Logan's house. For those that may not remember, one of my good childhood friends from little Redding, CT (home of 7,000 when we lived there) relocated out here and is a researcher at U of M and actually works with Dr. Wagner. Logan invited us over to his house for a BBQ to welcome us back and give us some good midwestern lovin' (read: lots of food) before "it" all begins tomorrow. He also invited another friend of his and his family. Logan's friend Mark is also a guitarist and songwriter, and is a prolific songwriter for Songs Of Love (

I happen to be on their newsletter list after meeting the founder, John Belzer, over email a few years back at the end of my music therapy degree. Essentially, his mission and mine are the same. I say, "Heal the Planet with Music." He says, "Give a Song today, Change a Life Forever." Think we're on the same wavelength? I can't remember who introduced us, but we are kindred spirits, and Mark is one of the early and more prolific songwriters for Songs Of Love. To date, he has written over 40 songs for kids or teens going through intense physical or emotional times. The healing power of music comes in many shapes and sizes.

Anyhow, it was a wonderful day, there were 5 kids running around playing and having a ball, 7 adults enjoying each other's company, and 1 baby discovering her talents on the keyboard....

Man, she took to that thing like a fish to water. It was AWESOME. By the end of the day, we "borrowed" the princess keyboard from Ellory, Erin and Logan's little girl, then hit Target looking for our own. Well, we found something even better...

wait for it...

wait for it...

That's right (Sara, eat your heart out), it's a Plex Keytar from Yo Gabba Gabba and it is AWESOME.

What a great way to go into this week. Totally connected to Family, totally connected to Friends, totally connected to Faith. Thank all of you who have emailed and commented in the past couple of days with your prayers and intentions. You KNOW they made all the difference a year ago. You continue to hold us up and keep us strong as we enter this strange bubble of BMT. We know we do not travel into this alone. We have our Three F's; (Friends, Family, Faith) they literally have all shown up this weekend to send us into the clinic tomorrow morning feeling totally supported. Thank you.

Epidermolysis Bullosa can be looked at as a cruel disease, but when I look at it, I see so much love, faith, and generosity from near and far, from old friend to new acquaintance, I CANNOT see anything but blessings all around us. This is not to say there isn't pain, stress, grief, anxiety, fear, exhaustion, and everything else that comes along with this debilitating disease. TRUST ME, the cost is ever-present. However, if that is all I looked at, I'd miss the gifts. The real gift? Having the choice to choose what to look at in the first place. For that, I am most grateful.

Tomorrow begins Day 1 in the clinic. Labs, consultations, tests, etc. from 9-3. We'll share much more tomorrow night. We go in your hands, in God's hands, and in each other's hands. I've never felt more proud to be the husband to my wife and the father to my children than tonight. Why? We are ready. We are as ready as we can be for this, whatever it may bring. We are ready, and we are not alone. What else could we ask for? Life is Good. God is Good. Amen, and Amen.

Good Night.


  1. God Bless you all!! (Friend of Sara Cooper)

  2. beautiful post, Tim.
    I admire you guys so much...what love you have wrapped around your daughters. Thanks for sharing it with us.
    On another note, thanks for the shout out!
    (I feel famous)...but, we DO have the Keytar...and Muno's red guitar as well.
    I'm telling you...we are so hard core around here!

  3. Hi Tim! Sending prayers and good thoughts your way!
    -Christa Lorenz

  4. we'll be following - rest assure you (nor rafi, mckenzie, samantha, tripp, and the rest of the big EB family) are not alone in this journey!

    + martin & ines
    (jonah's fans)

  5. Thank you so much for sharing your story,thoughts and feelings with us! Can't wait to hear what happens next!
    Lydia (Oregon EB Mom)

  6. Dear One, Tim...and Precious ALL,
    I am oh-so-grateful Christine forwarded this update to me. At our first meeting (at Health Rhythms training) I felt gifted to connect with Your Light.
    I feel blessed beyond words to be able to send loving prayers for beautiful Bella's healing, and the patience, strength, courage, and trust to know that God will send what He knows best to wrap lovingly around Your entire family.
    Namaste' Lovingly.
    Terry Adams
    (reading You want a more personal connect with who is sending are a few possibly identifying notes:I'm 5'9", blondish, glasses,60yr. - though You'd probably say "no way!",purple flame tattoo on right wrist,registered nurse, holistic practitioner,2 yr son, musician we discussed interested in music therapy)