October 22: And Then There Were 4...

Heaveno!

Well, we said goodbye to Grandma and Nanny today. Again, we can't say enough about how much they came through for us this past week. What a gift they are! I told Grandma today that I now truly see where Angelique gets her amazing work ethic from. Grandma Carolyn was fighting a bad cold most of the time here, but regardless, every morning she was first one up getting things going around here. Nanny Sheila, my mom, supplied the constant comic relief, always able to tell a funny story or be a funny story, whichever came first!

I am so grateful for them, because I have been unable to pack box 1. I function in and out of clarity and a fog as each day goes by. The ladies around me, however, just keep moving. Females are the stronger of the species as we all know, but I have witnessed that strength vividly over the past week and half.

I am having a really challenging time staying in the moment throughout the day, and Angelique has really had to pick up the slack with Ali, along with the two moms, and now my sister Tracy. I feel so bad about it; I don't meant to, but I find myself just, well, a little disconnected from the world around me right now. I remember when Ali was born. She was born via a planned C-section as she was breech, so we spent the full 4 days in the hospital afterward. I remember on that 4th day, I had to drive back to our condo for some reason, and I could feel myself in this bubble, totally removed from the world around me. This was not a good thing as I needed to quickly realize that no one on the roads cared that my wife had just given birth to our first born! Green means GO, buddy! That bubble was a bubble of joy.

This bubble, well, it has a combination of shock, sadness, pain, and trauma to it. I don't know what it feels like to have "shell shock," but I feel like I have it. I think I was in such a high state of intensity and trauma for so many consecutive weeks that my brain doesn't know how to ratchet back down just yet. I can think of things 'to do,' but I lack the ability to actually execute my thoughts, or if I can, it takes an abnormal amount of effort to do something that used to be done almost mindlessly.

Moving on...

This morning, Ali got to go to Pre-school here at RMH! Apparently on Friday mornings for one hour, they teach preschool, so today she worked on the letter C, and brought home a goody bag filled with Candy Corn... yuk! She won't have to worry about us stealing those from her! LOL.

Ali wanted to feed Bella breakfast. How cute is that???

Today, after Nanny and Grandma's departure, we made a pilgrimage to Super Target in Roseville - you know - "T1." It was Tracy's first time there, and boy did we have fun! Tracy stocked up on a lot of items she can't get in Spain for the family, and I raided the clothes for one last hurrah. When we returned, it was party time at RMH for all the October birthdays! So, Ali went off and had fun, Ang and Tracy continued to organize and pack, and I returned to The Podium...

The Podium is a guitar store in Dinkytown that has been there since 1959. Pretty sure Bob Dylan visited The Podium during his time here. What a great store. Anyway, a few months ago I played an absolute gem of a classical guitar there after lunch one day. I never forgot it. I had been looking at upgrading from my current classic guitar for about a year now, and I felt I had found that next step up. I had been meaning to return and see if I could trade in my current guitar for this new one, but I kept forgetting, or timing would get messed up... it just wasn't coming together. Anyhow, I finally got over there with my guitar and told my story to the guy working with me, and as soon as I said I was a music therapist, he responded, "Hey! My wife's a music therapist!" Folks, there are not a lot of music therapists roaming the country.

Once they made me an offer on my guitar and I looked at how much the difference would be, it still seemed out of reach. I had just blown $300 on clothes over the past week (actually - with my memorial suit it's more like $500), and just felt like I couldn't do it. So, I left the store dejected. I walked out to my car, and the lady at the parking booth said I could get my parking for free if I get my ticket stamped by the guy at The Podium. Since I didn't have the cash to pay, I returned to the store, and used the rest room while I was there. While walking back out, this little voice said to me, "You're gonna mindlessly blow $300 on clothes, but you won't spend that same amount for the most important tool in your professional life? Where are your priorities?" It wasn't that my guitar was broken, it worked fine, and had worked fine for the 4 years I've been playing it week in and week out. It's just that after 3 years on it, I could really 'hear' the sound of my guitar, not just the notes that came out of it, and it really wasn't the sound I was wanting to hear. With wooden instruments, they each have their own sound, and sometimes over time, their sound evolves as the wood evolves. In my case, the sound was moving further and further away from what my ear wanted to hear.

So, I stopped, took a deep breath, and said, "You know what? I'm going to get this guitar. The last time I played my guitar was for Bella as she died. Now it's time to move on." I even replaced the shirt and pants I wore that day. They would be forever etched in my mind and I couldn't look at them and want to wear them again after that day. So, we reached a deal, and out the door I left with my new guitar. It sounds BEAUTIFUL. It makes me want to play it all the time, and I didn't have that feeling from the sound of my last guitar, so I am very happy. My guitars are very personal to me since I work in such delicate situations in hospitals with them... they bring peace to so many... I want them to be the sweetest sound to my ear they can be.

I think the reason I'm rambling about the guitar story is that for some reason, spending a hundred here, eighty there, fifty here, a hundred, fifty more there doesn't SEEM as daunting as spending 280 at once. Why am I willing to mindlessly spend that much on clothes, and shy away from mindfully spending that much on my bread and butter? I share all this in the hopes that for those of you who at all struggle with money, you can know that you are not alone!

Okay, okay, moving right along.

This evening, Tracy took us out to Punch Pizza! It was mobbed due to pre-Friday night hockey fans, but it was great as usual. It was bittersweet since I knew it would be our last Punch pizza meal. There is a lot of that feeling right now. We then took Tracy to Mall of America tonight, and again I had that feeling. Now that we have decided to leave on Monday morning, the reality of this chapter ending is weighing so heavy on me. You know how many of you have commented that you are a little surprised about how much you are grieving the loss of Bella? I, too, am surprised how much I am grieving leaving here. So, Monday, we head out... but we're heading...

...East.

In the days after Bella's death, I kept receiving these strong messages that we weren't to head straight home. God wanted us on the road. I cautiously shared this with Angelique and left it alone, but each day for several days, it persisted, so I kept sharing. We realized we are already half way across the country, so why not take this time to make a roundabout way back home. So, we are heading out on 'walkabout,' well, not really, since we have an itinerary, although it is subject to change:

Homeward Bound Travel plan 10/10

10/25: Mon. Day 1: Minneapolis, MN to Schererville, IN 440 miles – 8 hours

10/26: Tue. Day 2: Schererville, IN to Louisville, KY 262 miles – 5 hours

10/27: Wed.Day 3: Louisville, KY to Asheville, NC 360 miles – 6 hours

10/28: Thu. Day 4: Asheville, NC to Winston-Salem, NC 145 miles – 2.5 hours

10/29: Fri. Day 5: Stay in Winston-Salem for 'EB Gathering'

10/30 Sat. Day 6: Winston-Salem, NC to Atlanta, GA 320 miles – 5.5 hours

10/31 Sun. Day 7: Atlanta, GA to New Orleans, LA 469 miles – 7.5 hours

11/1 Mon. Day 8: New Orleans, LA to Dallas, TX 547 miles – 9 hours

11/2 Tue. Day 9: Stay in Dallas for 'EB Gathering'

11/3 Wed. Day 10: Dallas, TX to El Paso, TX 638 miles – 10.5 hours

11/4 Thu. Day 11: El Paso, TX to Phoenix, AZ 430 miles – 7 hours

11/5 Fri. Day 12: Stay in Phoenix for 'EB Gathering'

11/6 Sat. Day 13: Phoenix, AZ to Orange, CA 359 miles – 6 hours

We are still working on the OC memorial date. We are shooting for 11/13 or 14, but it depends on several busy schedules coinciding, so hopefully we'll know more early this week.

We are calling the three events we are planning EB Gatherings because we don't want them to be as formal as the MN memorial was. There will be a little structure/program with us sharing our story and music, but mainly we want to give our online community the opportunity to meet each other, us included. Plus, on the EB Race T-shirt, it has the 4 pictures of Dalyon, Tripp, Jonah, and Bella. Many of us have fallen for all of these adorable kids. Well, we want Bella to meet all of them, one way or another, and we want to meet Courtney and Tripp, and Patrice, Matt, and Jonah as well. We have been bonded together through this disease called EB, and so many times over emails, phone, and the blog, we have wanted to just reach out and hug each other, well, now we have an opportunity to do that.

I have never really felt called to share my story in such a manner, but God's plan for us is His alone to know. Right now, we have just turned our lives and will over to the care of God, and in return, we have felt such comfort amidst the pain of grieving. We will spend two weeks sharing about the power of faith, love, and Bella.

Once we are home, we will have our final CA memorial. After that, we will listen to God, and allow him to tell us where he wants us and what he wants us to do. It is very strange sitting in this level of complete surrender and trust. EB has brought me to my knees, and Bella's death has brought me to the floor. I feel like my will has been finally crushed into powder and is just blowing away. I miss my will, it's what I am used to, but I learned that my will is not only insufficient at the end of the day, but it can be a genuine hindrance to me getting to the really good stuff in life.

Okay, that's enough for now. I am falling asleep as I type this. We love you all.

One day, Bella did look back and say, 'Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it went away."

God night.