October 27: From Louisville, KY to Asheville, NC

Early in the day in Kentucky...

Heaveno!

Well, as I sit here and type to "y'all," it is snowing back in Minneapolis, and we are sleeping here in Asheville, NC with the windows open. Crazy. We were mad to hear that news because we were looking forward to snow. Ali got so upset when she realized she is missing out on snowman and snowangel making. Tough to argue with that (remember, a 4.5 year old knows nothing of "commuting" or shoveling... snow is pure fun).

The drive today was beautiful again. We slept in, got breakfast in the lobby, and headed out of Louisville around 11am. These first few legs are short on purpose so we break Ali into road trips, and don't burn our selves out before we even get going. We stopped for lunch and let Ali play in the giant kidz play zone for a while to burn off some steam and be a kid for a while. That was a good thing. I got into the mix and before you knew it, two other little girls and Ali were attacking me, chasing me, me attacking and chasing them... the whole bit. When it was time to split, I gave the other mom and grandma the signal for "Team Leave," and they picked up on it right away, and before you knew it, the girls all had their shoes on and were waving goodbye to each other.

The Driver...

The Co-Pilot...

And... The Princess... check out the new pink headphones...

Ali pretending she's on a roller coaster going up and down the mountains...

We had a lot of fun going over (and through) the Great Smoky Mountains from Knoxville, TN to Asheville, NC. It was awesome! The colors on the trees were great, but we also drove into some low cloud cover and were actually IN the clouds for a while! When we came out the other side, the sun was starting to shine in the early evening and we were greeted in Asheville by a big fat rainbow. That was pretty cool.

The wonderful nurses that are running the EB race for Daylon, Bella, Tripp, and Jonah on Saturday here in Asheville put us up in this beautiful, quaint Bed and Breakfast called The Sweet Biscuit Inn. How can you go wrong staying at a place called The Sweet Bisuit Inn??? It is BEAUTIFUL. Turn of the century home with the swing on the front porch, old creaky wood floors, a grand staircase, and EASILY twelve foot ceilings in our bedroom and bathroom. Oh, and the cutest claw foot tub in the bathroom you ever saw! Ali LOVED her bath in it tonight!

What service! Seriously, those little shower heads are GREAT for kids' baths!

Tomorrow morning after breakfast, we will head to the Biltmore Estate for some goal setting (LOL), then some wandering around in town before we head off to my sister Mary's home in Winston-Salem, which is only a couple of hours from here! P.S. If anyone who is coming on Friday has a small P.A. or a two channel amp with a guitar chord and mic, mic chord, and boom, would you bring it? Patrice has gotten 50 RSVPs turns out (30 adults and 20 kids) and I've received 14, so it would be great to have sound amplified. Thanks!

Thank you all for your wonderful responses on the comments yesterday. They really made me feel better. Today, I asked Angelique to read them to me as I drove. It was nice, because it made me feel as I imagined Bella felt when I read to her your words just a few short weeks ago.

It was nice to be contributed to.

Do you let others contribute to you?

One of the conversations on the blog I want to address is the worry that some people won't know what to say, either on here or in person. Don't worry about that. There are no words to say, just feelings to convey. If you don't know what to say, SAY THAT! In that moment of authenticity, humility, and vulnerability, we will be connected, and THAT is the point of words, really: to connect each other to each other.

Here's the thing: it is not the words that matter. It's the sentiment behind them that counts.

I'll say it again; It's not the words that matter, it's the sentiment behind them that counts.

Here is an example: If I say "THANKS" in a condescending way to someone for giving me poor service, is it the same as when I say "THANKS" to someone who just let me stay/eat in their home? Of course not. But, hey, I used the same word, didn't I?

I know this is a quick and dirty example, but the point remains. If you walk up to me, look me in the eye, and say, "I am so sorry for your loss, I just don't know what to say," and you mean it, you just gave me all you needed to give.

Here is another important piece of the puzzle (and by the way, this stuff goes for any person - not just us - that is grieving): don't project what you think we are feeling onto us. We are not the same, and each person grieves in their own way. If you would be devastated, that may be true for you, but it may not be the experience someone else is having.

Here are 4 reasons why I am not devasted by the death of our daughter Bella:

1) My faith. I believe that she is in heaven with Ang's and my dad happy and free, waiting for us to join them with great anticipation. In my heart I can see her smiling that giant grin in heaven, LIGHTING it up even brighter with her addition to the chorus of joy that exists there. True? Who knows, but it sure makes ME feel better believing this truth, so I do.

2) Bella is never going to cry in pain from EB again. That makes me feel very calm.

3) We've known that Bella could die at any time since the night she was born. There was no expectation for a happy and long life for Bella. That is why we went to Minnesota in the first place. With EB things start bad, and just get worse. Not every case of EB is that way, but Bella had one of the two rarest and most fatal versions of the disease, and not a day went by where it it didn't significantly impact her and our lives.

4) We began to grieve for her loss in the end of July/early August. Let's face it, we lost that little spark plug the day she was intubated. I never heard her speak again, I never saw her big smile, and what I did see of her eyes was a washed out, medicated shell of what I once gazed at. She lost all her hair, grew to an unrecognizable size, changed color, and even grew in different color eyebrows. All the while that I knew the spirit Bella was still there, that fun, angelic, smiling, laughing cherub was gone. July, August, September, 11 days into October. 99 days. My friends, the grief had already begun for Angelique and me long before Bella's heart stopped.

So, I share all of this to give you an insight into two things:

1) It's not what you do (say), it's who you are being (how you say it)

2) It is not as raw for us as you may think, so you can bring it up, you can break down and cry in front of us, it's okay. We've done it, too.

Finally, I think there is a pressure to feel like we have to be strong and support someone who is grieving. Like they need our help and assistance somehow. When we ourselves are grieving the same loss, and we find ourselves weak, how could we possibly support the person who lost their child?

These gatherings we are holding are not for you to come comfort us.

They are for us all to come together to comfort each other.

One level playing field.

Yes, we may be at the center of the field, but we are all on it (and in it) together. After all, is there a quantitative measurement for love? If you loved Bella, you loved Bella. Who cares from how far or for how long or in what capacity that love was borne? My point is once you have loved someone, when you lose them it will hurt. That is the price of love, and I for one am HAPPY to pay the fee every time, for the beauty of love always triumphs over the pain of loss.

Alright alright, enough for tonight.

Keep those comments coming, I don't care what you write about, I just care THAT you write at all.

God night.

This one is for you, Nicole!

P.S. If you haven't RSVP'd for NC, TX, or AZ, please do so!

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