October 24: Awake and on the road

Our final view outside the RMH front door...

I always thought this was a bush at RMH till it turned this brilliant color!

Heaveno!

Hahaha, I just read last night's post myself. Wow, you'd think that I would know what I was talking about or at least what I was trying to say. Nope. Pretty interesting. I should get a dream analyst to read those lines and tell me the meaning of my life.

Anyhow, I'm all here tonight and posting early.

We are on the road.

This morning, my amazing sister Tracy returned home to Madrid, Spain to her husband, two boys, and two dogs. What a God-send she was. Like Nanny and Grandma, Tracy put in HOURS of cleaning, laundry, and packing for us. Plus, it was so much fun watching her play with Ali.

Also this morning, Logan volunteered to pick up Ali and give her a play date with Owen and Ellery while we finished packing. This was the key to us getting out of RMH today. We were really close to finishing by this morning, so we figured out that this would be the best chance to finally close up shop. Bella's nurse Renee called also to see if she and her fiance, Jeremy, could come by and help pack or clean. Renee said cleaning is one of her favorite things to do. Jeremy is one lucky man. So with Renee and Jeremy cleaning, Ang and I got everything packed up and I got it all loaded into the car.

Ali with daddy's earphones for her DVD player... YES!

It was weird leaving RMH today. It became our home under the most intense emotional pressure of our lives, so there are powerful bonds connected to it. I'm going to miss it. When you walk by other families, you smile and make eye contact and know that each other is "in the deep end" with one of your kids. The camaraderie and respect and support is wonderful. It'll be weird walking around my condo complex; walking by people who have no idea my daughter died in Minnesota. People wrapped up in their own significant worlds, worrying about who knows what. All I know is that before this, I spent A LOT of time worrying about meaningless things.

(Uh oh. I am taking typing breaks and holding my head up with my hand while my eyes find themselves closing. I better keep moving here!)

So, we hit the road to our friends Lonni and Jay's house in Woodbury. They are the family that lost their little girl Sarah in the same EB clinical BMT trial. They are the ones who founded PUCK, and if you haven't donated yet to PUCK in Bella's memory, would you please do that now?

I am going to stop typing now so you can click on the button and go make a donation - not only in Bella and Sarah's memory, but because it is National EB Awareness Week beginning today.

Go ahead.

Do

It

NOW.

Please?

Why are you scrolling? CLICK HERE

Okay, enough badgering. Seriously, though, if this blog has provided you with ANY value at all in your own life, if Bella's LIFE and DEATH have at all inspired you once while coming here to read, if you have had the thought, "Oh, I wish there was something I could DO for them,"

Well, now's your chance. Please, return the favor. Thank you.

CLICK HERE to make a donation. I'll wait right here while you do. :)

Now back to our program (What is this, a telethon?)...

So, we came here today because we wanted to spend one more moment in time with Lonni and Jay, now that we are in this most intimate club of 3... those parents who have lost their EB children to this BMT study. I don't know and have never met (though I have always wanted to) Theresa Liao, the pioneering, powerful crusader of a mom that got this whole thing rolling here at the U who lost one of her boys, so, that just leaves Lonni and Jay.

Ali, Janie and Aaron putting on some plays for all of us tonight...

That is not to say that we can't talk to plenty of others who have lost a loved one. Pain is pain, and suffering is suffering. One thing I have noticed and been guilty of myself is that people seek others who have been through the same exact diagnosis to relate to. This is very valuable for information and best practices sharing, but at the level of human BEING, we all relate at the same level. AND... (I know you aren't supposed to begin a sentence with AND but who cares) to walk and talk down the road together while in grief, it somehow lessons the burden. In the New Testament of the Bible, there is a story about 2 men walking from Jerusalem to the little town of Emmaus after Jesus was crucified. Jesus appeared along side them, but hid himself from their view so they didn't recognize him while the three walked and talked. What is important to me about this parable is that you don't hear about a single guy walking to Emmaus, and how his thoughts joined him for a nice internal dialogue. TWO guys start out together, and are joined by a third.

There is power in groups. The two men's pain and suffering was alleviated by their mutual company. And so it is in grief. Know someone grieving? Go BE with them. You don't even have to DO anything. Who CARES what you are DOING... this is back to my point about human doings versus human beings. If I'm doing something with you, but you are BEING cold, distant, bored, etc, I feel worse than if I was just by myself! If I'm doing something with you, and you are BEING loving, connected, of service, generous, nurturing, understanding, patient, etc. do you think I feel better or worse?

Are you starting to see my point in all this? We are called human BEINGS for a reason. BEING is where it's at, folks. So, stop trying to DO so much and start to BE so much. Chew on THAT for while.

For example, Jay invited me to the football game yesterday. The U got creamed by Penn State, and I know that makes all the Gopher fans out there sad. However, while I sat there feeling exhausted and numb, Jay just shot the breeze with me about whatever and it was better than being alone. Now, tonight, just getting to be together, the two sets of parents and the two sets of kids, it was good for everyone.

(Okay, now I am holding my head with BOTH hands. It's time for bed.)

Goodbye, Minnesota, tomorrow we leave you. When will we return?

In February.

Renee and Jeremy just invited us to her wedding! We needed an excuse to come back in the dead of winter to taste that bitter cold everyone hyped up to us, and, well, now we have one!

P.S. Last thing we did in our room at RMH before leaving?

Prayed hand in hand with Jeremy and Renee.

Now THAT is the way to begin THIS road trip.

God night.

Ali chillin' in her little fort in the closet! It's nice to have closets so big your kid can sleep in them!

And for your viewing pleasure, these pictures were taken last night at Dayna's party, courtesy again of Erin Spector. Sorry, Erin, that I didn't get these up last night!

Look for Ali's right foot... hence the expression...

Our friends Dayna and Brent...

Carrying my princess to safety...

Ellery, Ali, and Owen... the three musketeers!

I think THAT guy should be on a dollar bill! LAME (Laughing At Myself Energetically)