Thursday, June 10, 2010

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 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,


This was just too adorable NOT to include!


  1. Glad to hear you made it safely to MN.

  2. Loved reading about your trip and arrival in MN.
    My love and prayers are a constant!Mom

  3. Hi Tim: So happy you made it to Mn. without any problems. God really was with you, wasn't he?
    I will be checking all the time to see how your precious Bella will be doing the next few months. Your EB family is out here sending loads and loads of prayers your way. Take care guys. love Leah's Nana

  4. Excited, terrified, elated, hopeful, expectant about all sweet Bella (and you guys!) are about to go through. I pray for your strength, continued hope and perspective, and peace through it all. Thank you for being so willing to open up your journey to us. Honored to be part of the tribe with you.
    In Him,

  5. Thank you for sharing your journey and keeping Bella's cheerleaders posted on her new adventure. Your family is in my prayers. Hugs to you Angelique. I am inspired by your example as a mother and close family, thinking for you and the very best outcomes for Bella.