Day 1 under wraps!

Bella knows how to "Lean on Me," with her big sis...

One day done, 110ish to go!

We spent our first day in the clinic today meeting with doctors, nurses, and educators. They took Bella's history since Jan when we were here last, and did sort of a physical. I say sort of because there are just some things you can't test or measure on a kid with EB, like an EKG or blood pressure. No problem. The staff was successful drawing blood this morning, which was a relief since when we visited Columbia, they stuck Bella 3 times and couldn't get any blood out of her. This morning: first try! First good sign! Tomorrow, they place a CVC, or "Hickman Line" into her chest that will remain in (cross your fingers) for the duration of the transplant. They will be able to draw blood from that since it connects right into the central vein returning to the heart. So, no more sticks for blood! It will also serve as the main distribution site for medicines and nutrients.

Bella chillin' in the exam room with daddy's hat

We have a 6:00 am call time tomorrow morning for the procedure. Ouch! Then, once it is placed, Ang and/or I will go into the O.R. and do her dressing changes while she is under sedation. Love that. They will also take photos as well as a skin biopsy. We should be done and back to RMH by 3.

Right now, as the cliche goes, we're taking it all one day at a time... like a mission. Our mission certainly looks easier to handle when we just take the day at hand. Matthew 6:34 comes to mind. Depending on the version, it goes essentially, "Don't sweat tomorrow; tomorrow will take care of itself. Today has enough in it to keep you busy." And you know what? it really does. We take for granted just how much action and decisions occur in a single day. It's good to focus just on the day. This doesn't mean don't plan for tomorrow, it just means stay present to the matter at hand. This is refreshing; remaining just in the present. Not sweating the future or second-guessing the past. Good stuff.

The Rock Star herself crashed out in her crib. Chalk outline, anyone?

Okay, we gotta get up at 4:30, so I gotta get outta here. Please pray for a safe procedure. Dr. Acton is our surgeon. Please send positive intentions and thoughts that guide his hands safely tomorrow morning. Thank you for your willingness to be a part of this journey. We are grateful to have you in our lives. Living with Epidermolysis Bullosa could seem like a solitary thing; after all, how many people really know what we're going through? However, we don't feel sentenced to solitude at all. The human experience is ubiquitous at the level of just being a human being. We all feel pain for another's suffering. We all feel joy for another's success. This is what binds us, connects us. We all have way more in common than not. I rejoice in this truth and focus on it, and it magnifies the joy, love, support, and care we receive from all of you.

May you be blessed in all that you do today.

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 (www.songsoflove.org).

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.

The Family Reunited

Hey! Check me out on my new ride! Like it?

Man, it feels GOOD!

Ali, Bella, mommy, and grandma arrived via airplane today in rainy Minneapolis. I spent most of the day (except for taking in the USA v. England game) feathering the nest. I found out that we are 4th on the waiting list for a BMT room, so I unpacked all our stuff in our "transition room." The way it works here at the RMH is that first you get a standard room, then once a BMT room becomes available, you get to move in. The BMT rooms are bigger suites for families who will be here a long time due to a bone marrow transplant. It's just luck of the draw as to how long it takes to get into a room. Could be two weeks, could be two months.

Home Sweet Home

Anyhow, after a trip to "T-1" (the very first Target ever... it is AWESOME), I was able to unpack and store everything we own in our hotel-sized room. Gifts were awaiting the girls from a successful run at bingo Thursday night. They have bingo once a week here and they give away LOTS of toys. I won a "Baby Alive" doll for Ali, a Little People Fire Truck Ride-On for Bella, a Mickey Mouse Clubhouse DVD for Ali, and a set of butterfly wings to hang in Bella's hospital room. I made out like a bandit! Ali loves her new baby, "Ebba," and Bella totally digs her new fire truck. We also played in the giant indoor playground they have here.

Christmas in June!



I bet your kids never find the other's toys more interesting than their own...

I got to meet the other EB families, and Ang has gotten to meet some of them already as well. It is nice to all be here together. Strength and hope in numbers.

P.S. Bella is getting strong enough to get up onto her hands and knees, reach, crawl, sit up, and get around in a mixture of scooting and crawling. Her head is so big that these activities have been a little delayed. We worked hard on them in Physical Therapy before we left, and it's starting to pay off! Yay! Yes, this has meant that her right knee, which used to be relatively unscathed, has now really started to blister BIG TIME, but with Epidermolysis Bullosa, you just learn to deal with collateral damage in everything, so it's all good.

P.P.S. Please check out the TWO new video/photo montages on youtube under the VIDEOS OF BELLA tab on the right. Also, please purchase Bella's book or if you already have, tell your facebook/twitter/linkedin friends about it.

Alright, last one to bed as usual. Still gotta get one more bottle into Bella; the traveling threw everyone off their schedules. Nice to look over and see a room full of sleeping ladies. This is our home now for the next 4-5 months, and it feels good to be together. Ang and I do a pretty good job of flying solo when the other is out of town on business, which is a regular occurrence in our house, but when the 4 of us are together, how do I say this... well, we just feel... galvanized.

Our Family Credo is, "Together, there's NOTHING we can't do!"

Much love and gratitude to you all.

Good night.

The Sienna has landed... in Minnesota!

I see you!

I want THIS one!

Well, I have to tell ya, I just took the most beautiful little drive...

It was so beautiful, I just kept on goin'.

and goin', and goin' and goin'.

Through endless dirt, and rock, and grass, and mountain,

The highway unraveled in front of me.

Above it all,

God's smile washed over me

in the form of an unending sky

so beautiful; like his love, it was endless.

Everywhere I looked, there he was.

I was never alone.

I saw hardly a car for hours at a time,

And still, I was never alone.

I took lots of pictures of him,

He smiled for every one.

God can't ruin a picture!

The ones that weren't so good?

Had too much of man in them:

The glare from a newspaper stuffed in my bag,

the side-view mirror, or roadside fence;

all useful for manly things,

but useless in a portrait of God.

And yet, it was the strokes of man's brush on God's canvas that made for some of the most compelling images. The juxtaposition of small amidst LARGE... We take up such little space in reality. We are so small. Yet we dream, we love, we live like we are gods ourselves.

I drove by a 70's porsche that was alone in a field in Idaho. Grass grown up through it, around it, over it. I thought of the self importance its owner might have felt as he pulled off the lot for the first time in it, or when he or she drove it down "the main drag," or pulled up to work in it.

Where am I going with all this? No where.

The girls playing in their room together the day before I left.

It was simply a nice reminder that though we are entering perhaps the most stress-FULL experience of our lives here in Minneapolis, we are but one family of over a half a million families that have come to this very hospital for this very procedure. Now, true, we are only the 11th family at this hospital with this disease to go through this procedure, but spending 3 days in God's glory reminded me that while we narrow our focus - the lense of our camera - for these next 4-5 months to a single hospital bed, God is smiling overhead of Minneapolis, and overhead of Fargo, and Bismark, and Butte, and Idaho Falls, and Salt Lake City, and Mesquite, and Las Vegas, and Baker, and Barstow, and all the way back to Orange. I realized that no matter where I went, there he was smiling over me. That was very comforting, since we are heading into unkown waters. I just spent 3 days in unknown waters, and he never left me for a minute. I know where he'll be for the next 4-5 months.

(Lot of masculine gender above - no disrespect - that's just the way it fell out of my head)

I took a deep breath as I walked toward the entrance of the Ronald MacDonald House (hereby called RMH), like a freshman about to walk into his freshman dorm for the first time. I wasn't even through the front door when I saw McKensie and her mom, Missy standing in the foyer. Immediately, I felt at home. For those of you that don't know, McKensie is a 9 year old girl with epidermolysis bullosa. They leave tomorrow morning back to PA to rest up and recover from a long, grueling, double attempt at BMT. It was an honor to meet them before they left; we are a small tribe, us EB families, so it's nice to connect physically, if only for a day. McKensie is such a trooper. What a journey she's on. That girl and her mom and dad have strength like you don't even know is possible. I saw it in all their eyes tonight. Much love and respect to you, Grays!

There are TWO NEW videos up on youtube for your pleasure by the way. One is a photo montage of my journey here and the other is a new video montage of Bella's first year that we showed at her birthday party!

P.S. If you didn't know, DebRA is our FEATURED PARTNER for the month of June! If you have been procrastinating buying Bella's book, wait no longer! 50% of proceeds regardless of how many or few books we sell this month go straight to DebRA!

Also, if you HAVE read the book, THANK YOU! I have received a lot of positive feedback. Thank you very much. I have a favor to ask anyone who has read the book. Would you go onto the lulu.com page and leave a review? It'll only take you maybe 2-3 minutes, really! Just click on the book on the right and follow the instructions on their page. It's really easy, and you don't have to write a book of your own, short and sweet is good, too!

I will be posting on a daily basis from here on out, so stay tuned!

Many blessings,

Tim

This was just too adorable NOT to include!

What a Celebration!

On Saturday, May 29th, we celebrated Bella's first birthday in style. We were surrounded by "the Three F's" as I like to call them: our Friends, our Family, and our Faith community. We threw the party at our church fellowship hall and the food, cake, and fun was enjoyed by all, especially Bella!

We had the outdoor playground open for the bigger kids, the nursery open for the younger kids, soccer balls out on the lawn, and slide shows and video montages of the past year running in the main hall for all to enjoy, no matter what their age.

There was just so much JOY present. It was awesome.

Living through a year of Epidermolyis Bullosa has been the most challenging and rewarding experience to date. It has amplified everything in life. I don't take ANYTHING for granted anymore. The love felt from everyone on Saturday was so wonderful. We go to Minnesota filled with love and support from everyone around us. What a great feeling. Even the guys I play Sunday afternoon soccer with are praying for us.

In other news, PLEASE check out this month's Featured Partner! It's DebRA!!!! YAY! We are so excited to continue to return the favor by raising some more money for them this month. They have been so good to us since day 1, and last month, not only did we raise enough money to donate 100 books to their New Family Boxes, but we raised several hundred dollars over and above what was needed for the book drive! Well, let's keep it comin' this month!

We are sad that we are going to miss the Patient Care Conference DebRA is holding in Cincinnati this month. It's the first week/weekend we arrive in MN. That would be a little too much to bite off. It wouldn't be so bad except it is only held once every other year, so we are sad we will have to wait 2 YEARS to meet our community face to face at last.

Meanwhile at home, we continue to prepare for next week's pilgrimage to MN. I can't believe by this time next week, I'll be in Salt Lake City driving the minivan alone MN. There is still a fair amount to do, but we're getting a lot done every day. Thanks to my parents for coming out from CO to participate in the party and help here at the condo. Just watching the kids play while I run around banging out honey-do's is such a help.

I will close by asking you to comment on this post. Each family that has gone through the BMT has communicated in their own style on their blogs and have shared a different angle or view of the journey. We are asking you to tell us, "What aspects of the BMT journey would you like to read about specifically?" Please tell us. We plan to be a clearing house of information and inspiration throughout this journey. SO many gave so much to us through the web in our first days, weeks, and months, now it's our turn. So, PLEASE, comment.

Peace!