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!

Ronald McDonald House, Here we come!

Quite the little airline traveler, stole my seat AND my hat!

Well, we're back from another trip to MN.

This time, it was to scout out lodging for the rest of the family Bella's BMT this summer. We flew in Friday evening, looked at 5 different properties Sat, and flew out Sunday morning. Oh, and we even planned a dinner party at the Mooreland's (founders of PUCK) on Saturday night! WHEW! Ali hung at out grandma's and Bella, mommy, and daddy made the trip. This was Bella's 4th airplane trip in her first 10 months! She's pretty easy to handle, but she is SO BIG that we can't do the lap thing any more! Holy cow, you should have seen her stretched out while napping. Our arms nearly fell off from the weight alone! Never again.

We checked out all different shapes and sizes of living arrangements. We saw brand new lofts downtown, an extended stay Marriott, the RMH (Ronald McDonald House), and two apt. complexes in St. Anthony, the town adjacent to the University just to the north. Like anything, there were pros and cons to all of them. RMH, though made it on both of our top 2 finalist lists immediately, and then from there is was an easy pick.

What's funny is that neither of us at 9 am were thinking about RMH as an option. That changed the moment we parked in front of the house.

First of all, it is across the street from a quaint little park and walking distance to the hospital. This means, that when we have to go back and forth for tests after discharge, we won't need to ride a shuttle or public transportation, which is a good thing, since Bella's immune system will be next to nothing.

Then ,we walked in through the front door and Ann, the weekend manager greets us, takes one look at Bella, and says, "Now let me guess, EB." Then she proceeded to speak personally of her affinity for each other EB child that has stayed there during this clinical trial by name. No explaining to do here.

After brunch, we toured the house... I mean HOUSES. Technically, this RMH is 4 houses connected by one massive first floor. Yet, every inch is cozy and comfy feeling. This is the complete opposite of the DORM we stayed in in San Diego atop the parking garage for Bella's G-Tube insertion. Night and day, folks. We were amazed by how different (and better!) this RMH was compared to San Diego.

I could go on and on, but suffice to say that this property is like a mini Disneyland for Ali. Also, the kindercare Ali is going to go to is also within walking distance of the house! Ang is going to work from home 4 days a week, which means she can walk Ali to kindercare, walk back, and work from our special, giant BMT suite we'll be staying in, and she can cruise over to the hospital to bring me real food (are you reading this, Angelique? wink wink) for lunch, then walk over to pick up Ali, and have dinner prepared every night of the week with Brunch on the weekends as well. Aoh, and Ali gets movie night twice a week complete with free popcorn in their own in-house theater room! KILLER. Good stuff all around.

Bella knows she can always lean on her big sister...

We are really excited, and quite frankly, I am ready to pack the minivan today and go. We are waiting till June so Bella can have her first birthday here with so many of the friends and family and faith community that helped her reach this milestone. Frankly, most first birthdays are for the parents for surviving the first year, but this one truly is for Bella. She's the one who's done the surviving. She is as strong as an ox and while she deals with blisters and teething, she is still sweet as a peach...

...until bed time... she reallllllly doesn't like the sleep thing. Someone actually called the front desk to complain at the hotel because she was WAILING at midnight for so long, that a neighbor thought she had been abandoned. No, really. The girl at the front desk said when I answered the phone, "Oh. there IS someone there with the baby. Okay, thank you." and hung up. Really. Not joking.

Get the coffee in the pot! Daddy's a grumpy bear without it!

We also want to close by saying thanks to the following people: Grandma and Grandpa, Joe Polish, Paul Ringgold, Jackie Gardella, members of the Disciple's Women's Group at church, and the anonymous donor from Harbor Christian Church. These people all donated cash or frequent flyer/rewards miles/friends & family rates to help us on our two trips to MN and one to NYC. Each trip we took, someone or ones stepped up and volunteered to help us along the way. There have been COUNTLESS examples of this generosity these past 10 months, but we just wanted to publicly acknowledge that these trips were made possible through the love and generosity of these folks. It really does take a village to raise a special needs child, and thank GOD, we have that village. What's really cool is that this village is stretched across the map, and thanks to the internet and email, we can be connected and reach out into each others' lives to lend a hand when a hand is needed. Thanks again. We promise to pay it forward.

Last but not least, if this series of shots doesn't melt your heart, nothing will...