Sunday, October 31, 2010

October 31: Atlanta, GA to New Orleans, LA

Heaveno and Happy Halloween!

I can already tell this post might be in total gibberish as I can't keep my eyes open. We had a great road trip to New Orleans today. We did the French Quarter, then went to see baby Tripp and his family. We are staying with them tonight. Another beautiful day on the road. Ali is really starting to get the groove; she was great all day today, and it was our longest run yet.

Hilarious time in the french quarter... Ali STOLE the show. Beads beads Beads. Then, my camera died. Maybe for the best? ;)

There were a lot of pictures taken of the "Superfamily!"...

Baby Tripp is surrounded my more love (and toys) than you can imagine. Courtney, her mom, dad, and rest of the family are just so so sweet.

Too tired to go on...

God night.

Trendy mirror not exactly functional for all...

Now it works!

Ali was so excited; she said she finally got to hold Bella (I know...)...

This one is Ang's request. Man, we miss that kid...

Saturday, October 30, 2010

October 30: Winston-Salem, NC to Atlanta, GA

This was taken by Jennifer Edling at our Eb picnic in Minneapolis just last week??? Feels like eternity ago already...


Oh what a beautiful mornin'
Oh what a beautiful day
I've got a wonderful feeling
Everything's going my way...

... right up until I got off the freeway here in Atlanta... but I'll get into that in a minute!

We got up this morning - get this - at 10:52 am.

10:52 am.
10:52 am.
10:52 am.
10:52 am.
10:52 am.
10:52 am.
10:52 am.

10:52 am.


[Big smile - I crack myself up, really.]

Seriously, I was up till about 4:30 working on the slideshow, and we didn't set an alarm, so I still managed to get a decent "morning's" sleep! Ang needed the sleep, as did Ali. Oh, man, what a wonderful treat to get to sleep in so late. Parents, you KNOW what I'm talking about.

Mary and Tom's homestead...

Us, Mary, and two of her amazing 6 children, Kevin and Sheila...

My sister Mary and me...

Ali playing with one of her cousins, Brendan...

We took our time getting out of the house today since it wasn't as long to Atlanta as I first thought. It was only 4.5 hours (don't tell the cops). Anyway, another beautiful day for a drive; high 60's and sunny. Hardly a cloud in the sky. Ali napped for almost 2 hours in the car! I'm tellin' ya... we lived a charmed life...

...right up until my google navigator told me to exit off the freeway about 4 miles too soon. Not a big deal; as Ali reminded me, "but daddy, you LIKE taking the scenic route!" However, it was a sign of things to come. We got to our Inn and there was no parking, it is on a busy street, and there are restaurants and bars beside AND below the Inn itself. We had to drive around looking for street parking (yikes - everything we own of value is sitting on a dark side street right now on a night where people overload on stupid), and once we got to the hotel, the guy tells me he doesn't have a room for me.

I send flaming daggers through his skull from my twin turrets of eyeballs.

Once he extinguishes the flames in his brain, he scrambles for a back up plan. He sees I am holding a very tired and cranky 4.5 yr old girl, who despite her crabbiness, IS the cutest thing on two feet. He finally says, "[sigh] okay, I'm going to kick someone else out of their room." I thought that was a little harsh and unnecessary, but he went on to explain that he meant that he would give me the last double that was being saved for someone else, because he was pretty sure they didn't have kids. That was pretty cool. He told me he has a little one at home and the look in my eyes made him think of how up the creek HE would have been if the tables were reversed. Pretty cool, right?

Anyhow, in hindsight, I wish he never gave us the room! LOL. It's Saturday night on Halloween weekend, and this "Inn" happens to be sitting on top of a rock and roll lounge and next door to an outside patio that has a rock band playing tonight! The "Inn" is old, and the floor shakes from the snare drum, bass guitar, and now the DJ (who it sounds like MAY have just finished up for the night! Oh, to be 24 again. None of this would have phased me because I'd be DOWN THERE! LOL. Now I drive a minivan, bring Dora the Explorer toys to the diner, and can braid hair like no straight guy I know. Ah, parenthood.

Oh well, what's a little eccentricity and culture right? NO problem, except we are trick or treating IN THE FRENCH QUARTER in New Orleans tomorrow night and figured we'd get all the eccentricity we needed - and then some - there!

The best part? Ali, being the rock star that she is, LOVES THIS PLACE! Man, it took everything under the sun for her to finally go to sleep; she was digging all the people walking the street below in costume and listening to the music pump through the floorboards! Hilarious. I just went with it. It wasn't until Ang had crashed out and Ali was bugging HER that I had to lay down the hammer. I told her, "If you want to stay up and party with me that's cool, but leave your mother alone, she needs sleep!" With that, she promptly laid down next to mommy and CRASHED out... in my spot. Guess I'm sleeping solo.

This is where Ali started at 10:00 pm... in her bed...

... and this is where she ended up at 1:00 am... in OUR bed!

We think we've picked up a little stomach bug in the van; the number of empty alka seltzer wrappers and tums tablets seems to have taken a steady upswing over the past 48 hours. Please pray for happy tummies, especially since we're not going to be that nice to them tomorrow night!

I can't wait to post tomorrow night. I can't wait for you to see the Ringgolds in costume this year! After the year we had, there was only one option. You'll see... wanna take bets in the comments? Post what you think we're gonna be while we're struttin' our stuff on Bourbon street (tomorrow afternoon, mind you; Ali may be a rock star, but she is still only 4.5).

Lastly, I want to thank the Tacky commenter for again being the necessary antagonist/catalyst the other night. Your comment and my rebuttal galvanized a whole troop of people to step up and take action in helping us spread the word and raise money. Nice job!

A slap in the face can carry a blessing in it, if you but look for it.

God night.

P.S. Again, here are the details for the upcoming Gatherings and CA memorial:

Bella's TX Blog Gathering:
Tuesday, Nov. 2nd @ 5:00pm
Community Christian Church
1300 Holly Drive
Richardson, TX 75080

Bella's AZ Blog Gathering:
Friday, Nov. 5th @ 5:00pm
Franciscan Renewal Center ("The Casa")*
5802 E. Lincoln Drive
Scottsdale, AZ 85253
*= This has yet to be confirmed - though unlikely, be prepared for a site change
RSVP to with what potluck you will bring.

Bella's CA Memorial Service
Sunday, Nov. 14th @ 2:00pm
The Wallace All-Faiths Chapel
Chapman University
One University Drive
Orange, CA 92866

One last thing; if you want to contact me directly either on facebook or gmail, that's perfectly fine. It's better than leaving a comment as I cannot reply to you directly from the comment. That's the one thing that irks me about blogger; for those who sign in and say who they are; google shows their profile, but stops short of letting you email them. FAIL. I guess they wouldn't want to be mistaken for a social network. LOL.

And now, I give you the slide show from our EB Gathering yesterday, and a personal request picture of "Back-in-the-day Bella!"

October 29: The NC EB Gathering


It's now 3:22 am and I'm finally getting to post; not because I had software problems, though. Thank you to those of you that recommended You will see my first attempt with them below. I was sad I couldn't add music like I could with Visual Slide... but I'd rather you SEE these pictures than HEAR anything; I don't have music playing when you enjoy any other pictures on the blog. I like the idea of making it a collage in iMovie like I have done with other projects... I just wanted the pictures on the blog page itself this time.

There is so much to share and say about the day, that I won't be able to do it justice. It was a wonderful day. Patrice was amazing (don't bother telling her, she already knows! ;P); there were close to 50 adults and kids there and there was FOOD GALORE! My apologies for us getting there a little late; we lost track of time today visiting.

It was SOOOOO NEAT getting to put faces and smiles and eyes with names on the blog. When someone would say who they were, I recognized just about every single name, and hugs were shared, as well as a couple of tears. We all ate a bunch of food, introduced ourselves to each other, found bizarre ways that people knew people who knew people, etc. I sang a couple of songs, shared a little, as did Ang, and invited a couple of people to come up and share about this experience (Patrice and my blog community) and what it has meant.

Patrice shared the most heartfelt comments about this journey and relayed how important our online family is, not just for information exchange, but as Angelique said, for inspiration exchange. There is power in groups, and when I use the word power in this case, I mean that we can walk longer, stand straighter, and reach higher when we are a part of something bigger than ourselves than we can when we're alone.

Thank YOU (the person reading this in your chair right now) for being a part of THIS group, and thereby helping Angelique and me to be stronger than we would be/could be on our own.

The reason I'm posting so late is that I stayed up for probably 4 hours tonight delighting in a philosophical marathon with my brother-in-law, Tom. Man, we had so much fun. He and I are kindred spirits, and really enjoy going down the rabbit hole of thought. We were doing some scuba diving we went so deep tonight! I love Tom, and always have, and was SO HAPPY to get to spend so much time together tonight. Living on opposite coasts, and them having 6 kids and me being on the journey I've been on... well, I haven't gotten to spend much face time with him, and tonight was just so great. I think Ang is going to need to pull a shift driving tomorrow!

Other news:

Our Dallas EB Gathering:

Community Christian Church
1300 Holly Drive
Richardson, TX 75080

Tuesday, Nov. 2 @ 5:00pm

If you are planning on coming, please email me at and please offer to bring a dish for a potluck meal. Please, do not email me if you can't attend; please understand that I have very limited access to email on the road and need to keep the lines open. Thank you for understanding.

We picked this venue because it is small, intimate, and in a DOC/UCC church (our denomination) and Richardson is sort of in between Dallas and Plano, the two cities with the largest concentration of blog followers in TX collectively.

Please. We are driving a long way to see you. We want to meet you. You mean so much to us; you don't even know. I know that 5pm on a Tuesday night in Richardson will take something unreasonable or maybe even extra-ordinary for you to make happen, but consider that traveling the countryside for two weeks with a 4.5 year old is a little unreasonable and extra-ordinary just to meet y'all! Please come. Please make it work. I thank you in advance for whatever it will take on your end to rearrange things to be there, but these are not ordinary circumstances and this is not an ordinary event. Today was soooooo healing for us. Please come and hug us, tear up, fumble over words, but mostly, just come and share a meal together, as Christ did so long ago. Let us break bread together. Let us be with one another, if for only a couple of hours on one particular night. Please come.

Someone asked specifically how Ang and Ali are doing. Unfortunately, Ang is battling a little bit of a cold right now, and is (as we all are) perpetually tired. Still, she is in good spirits, and delighted in (re)connecting with you all in person today, and has had fun meeting my sister's family for the first time. Ali is simply magical. She is NOT 4.5 spiritually, and I dare say even intellectually. She is just handling this all sooo well, it is inspiring. She is a thing of beauty. She has really enjoyed getting to know her cousins, and playing with them. She is something special, says her unbiased dad.

P.S. To the person who chose to share her opinion that it would be tacky selling Bella's book at Bella's event... um, I can't think of a more appropriate place to share it. It was not her memorial; it was a gathering of Patrice and my blog followers to celebrate our community and celebrate Bella and the way she brought us ALL together. In addition, have I not provided my heart and soul nightly to you all? Has that not produced value for both of us? I don't have the right to try to earn a little income to 1) offset the tremendous amount of income I have given up over the past 17 months and 2) donate a few more dollars to Ronald McDonald House? Please. Why would it be tacky to earn some gas money to help support my wife who has shouldered the financial burden of caring for our family alone since June of 2009? Sorry to belabor the point here for all of you that didn't think the same thing, but we have weird emotions about money in our society, and I don't understand some people's notions about it. Let's face it. It's a hot topic; a topic that drives many, many couples apart, and did so long before this recession. Money has no meaning in and of itself. It is simply a tool. Use it for good, and brings good to the world i.e. providing for your family, supporting charitable organizations, FINDING A CURE FOR EB. Use it for bad, and it can do nothing, or maybe even bad things for the world.

You all earn money somehow. What value do you provide the world, either for the money you make, or with the money you make? God knows my heart and knows the difference I am out to make in this world for others, and YES IT WILL TAKE HEAPS OF MONEY TO MAKE IT HAPPEN, so get used to me talking about, and flat out asking for money, as I have already many times.

I apologize, I didn't have time to edit and post pictures from today, I have a feeling I'll be making another slideshow for you all for tomorrow night! Now, for your pleasure... the Biltmore House, and the picture of me with Bella in "the sleeper hold." (Sorry Denise, I can't find the other one right off hand...)

God night.

Thursday, October 28, 2010

October 2: From Asheville, NC to Winston-Salem, NC


Well, we made it to my sister Mary's home this evening in one piece, and after two nights in two hotels/B&B's, it's nice to be in a home again. Before we got here, we sure had fun at the Biltmore "House" and "garden." Yeah, that's the understatement of the year. Prior to hitting the Biltmore, we enjoyed a wonderful home-cooked meal for breakfast at The Sweet Biscuit Inn. After breakfast, the owner, Robert, took Ali on a little expedition in the front yard looking for 'critters.' Her uncle Mike the herpetologist would have been proud! They were plastic critters, but I taught Ali the difference between poisonous and non-poisonous snakes, and we determined the difference between snapping turtles and sea turtles. Good fun!

Once it was time to leave the beautiful Sweet Biscuit Inn, we headed for the Biltmore Estate, which was just a short jaunt from our B&B. Thanks again to the nurses Kendra and others who are running for Bella, Daylon, Jonah, and Tripp on Saturday in Asheville for putting us up! That was so nice!

Anyway, as soon as we drove into the grounds, I could tell it was going to be magical. The place was simply B-E-A-U-T-I-F-U-L. I am super mad because I have a slide show with no less than 41 pictures I took and edited, and I can't figure out how to get the code on this page. Grr..... First I tried downloading smilebox, and it wouldn't install on my mac for some reason. Then, I downloaded Slideroll Gallery AV, no dice, and finally I downloaded Visual Slide Show. My three options are to publish to a local folder on my computer, publish to a FTP server, or insert to a HTML page. GREAT! I thought, except they mean an HTML page inside an html editor on my computer, which I don't use, thanks to google's blogspot online editor. FOILED! It's now after 2 am and I am just beat and frustrated.

Someone tell me what is a free slideshow viewer I can use with blogspot? I don't want the slideshow in the sidebar, I want to insert it like a photo or video write in the blog entry. Thanks!

The Biltmore was wonderful. The gardens captivated me. I have really fallen in love with:

1) photography, and
2) simple things

My brain lacks the ability currently to grasp complex things. I find beauty in simplicity these days. The sky, a tree, grass, falling leaves, flowers. Not a day goes by that I don't stop and marvel at one of these things. It reminds me of God's promise to Noah when He sends Noah a rainbow. I feel like all these objects in nature are like that rainbow. They are God's messages saying, "Hey, I know you are hurting, so I sent beauty to surround you wherever you go. All you have to do is look for it."

It's that second sentence where a lot of people get tripped up I think. Folks, the beauty IS all around you RIGHT NOW, it simply requires effort on YOUR part to look for it. It is not handed to you. You can walk down the street looking at your feet or the concrete and never notice the sky. You can put on your ipod and miss the sound of wind chimes singing to the whim of the breeze. You can dart home from work every day as fast as you can and miss the beauty of a tree-lined side road that is simply glowing from falling leaves.

At one point, I crossed simply the most beautiful set of wind chimes while we were in the garden store. They were nicknamed, "The Stratavarious of Chimes," and they were simply hypnotic. I couldn't stop playing with them; they sounded more like quartz toning bowls than wind chimes. They were also GIGANTIC. Amazing, soothing, deep, rich tones emanated from this chime. It was like the sound of heaven for me. I could hear Bella in the hum of the harmonious tones vibrating gently into my very soul. It made me really sad, and I needed to sit down and grieve for a little bit, but the pain had a beautiful, almost exquisite quality to it.

I was healing.

Just a little.

I'll take it.

Can't wait to meet all y'all who are comin' to the shindig at Bolton Park in Winston-Salem tomorrow. I am too tired to continue. Remind me tomorrow to tell you more about Mary's awesome family, okay?

God night.

P.S. Important info regarding memorials... start times have changed everywhere except here in NC:

TX: 5 pm on Tuesday Nov. 2 ???
AZ: 5 pm on Friday Nov. 5 (hopefully) at The Franciscan Renewal Center ("The Casa")
CA: 2pm on Sunday Nov. 14 at Chapman University Wallace Chapel

Please make a note of it! We are STILL working on locations for TX and AZ, please be patient! It will hopefully be in the north Dallas area in TX and in Paradise Valley in AZ. Thank you for your understanding!

P.P.S. I almost forgot! I will be selling and signing copies of "Bella's Blessings: a Humble Story of Providence" tomorrow at the NC gathering. Books are $20 in person, so take this opportunity to pick one up for you, and one up for a friend for Christmas!

I never get tired of looking at those eyes, do you?

Wednesday, October 27, 2010

October 27: From Louisville, KY to Asheville, NC

Early in the day in Kentucky...


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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