Saturday, October 30, 2010

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.


  1. I'm the first one to comment today. I'll have to come back later because I love to read the comments as much as the blog. I'm glad you enjoyed the gathering and got the chance to meet the people that love you and Bella. How nice to be with aunt Mary and her family. The slice show is so beautiful.... Thank you for showing us your country (I need to read about this Biltmore House).
    I have a little story for Ali that happened this week . My son,Martin(12), bought two male gerbils six month ago and to our surprise last Monday they had eight babies!!!!! Freddo was not a boy!!! They are so cute!
    Have a nice weekend .

  2. Thank you for continuing to share your remarkable journey with everyone. Not just the journey across the country as you make your way home, but, your spiritual journey as well.

    I must confess that I am really enjoying your photos. Jack Frost has already visited here. The roses and flowers are long gone, the wind last week took most of the leaves as well. So I have put the camera away for a few weeks as I wait the wonders of winter and the snow to fly. Not a real fan of the white stuff and the extra work it brings, but it does make for some wonderful photos.

    Time to go, my 2 little 'hot dogs' need some attention. Molly has put her ball on my keyboard twice and Maggie is jumping at my feet.

    Safe journey,
    The Cooley family in Nebraska

  3. Happy Saturday! I found myself thinking about y'all and how the gathering was going all evening yesterday. It sounds like it was an uplifting event for everyone who was able to attend! I would have loved to meet everyone, and buy several more of Bella's books to give as gifts this year. I would also be willing to buy a signed copy at a premium...if you would be willing to send one...jus sayin!

    I have to thank you again for coming here every day to share your lives with us. I don't always comment, but I visit every day. Still praying for all of you, still missing little Miss Bella. Although I will not make it to the current gatherings, I have no doubt that we will meet one day, somehow, somewhere...blessings to you all!

    PS I am reading from my phone and can't currently view the slideshow, so will check back later from the laptop...can't wait to see the pics of the day!

  4. As I am sure you know, you take amazing pictures! The incredible scenary helps, but I love how you capture the beauty of it all. Your pictures make me want to travel! I need to plan a road trip across the east coast. I will have to time it right so we don't end up stuck inside because of snow!

    I am so glad to hear the gathering went well and hopefully brought about more peace for all involved. I look forward to more updates and pictures!

    Peace for Your Journey,
    Michele AZ

  5. Good morning, sweet family...

    What a treat it was for me to be able to meet you all last night! I must say, you were exactly as I had imagined. The creative spirit and "mouthpiece" Tim, tempered by the serene and stabilizing Angelique, surrounded by the delightfully effervescent Ali. Your blog as well as your pictures have definitely captured who your family is. Props to you, Tim, for being such an effective writer!

    The second treat came in being able to put names with faces after all these months of reading comments. In Spanish we say, "Qué chico es el mundo", and last night it was evident that the world is indeed is small. I'm still smiling about the connections I had with the other Susan and your sister Mary.

    I was also glad that you made your book available to purchase. I had been wanting to get it, but just hadn't taken the time to "click" to make that happen. I began reading last night, but it wasn't long before I drifted off. I look forward to continuing this weekend.

    I appreciated the opportunity you gave for people to share last night. It was getting dark and chilly (and I had ridiculously chosen to wear sandals), so I didn't come forward. Please allow me to say now what was on my heart. I don't have kids so I can't identify with your family or Jonah's on that level. What I have learned - actually I knew it all along, Dorothy -is that life is a precious gift and we take so much for granted. The beauty of family, friends, and God's creation should be celebrated every day. I allow myself to get caught up in the frustrations of my job, when I know how blessed I am to be working - and having the chance to a make a difference in kids' lives. My house needs to be cleaned, but I've got a roof over my head. I have people in my life who love me and would do anything for me. There are birds splashing in my birdbath and kitties purring on my lap. And you, Ringgold and Williams families, remind me every day to celebrate life and to appreciate those blessings - some obvious, others unadorned - that surround me. So, thanks. There it is again, that ineffective word. But it's all I've got and it's from the heart.

    Prayers for continued blessings as you journey to meet the others whose lives you have touched. Safe travels.

    With affection,

    yep, your friend in NC

  6. Great pictures Tim.. you guys lool great, can't imagine how tired you all must be. Love the picture of Angelique. Thank you for sharing your families journey with us, it is very inspiring to all of us. are spot on about the Bella's book signing, my feeling is, you have said that you and Angelique will now spend time fighting for a cure for EB..well in order to do that more people have to know and understand what it is. I think the book signing is a great idea to get the word out. I can tell you that I have told so many people about Bella's journey and not one person I spoke to had even heard of EB. The more we all talk about it, the faster the word gets spread, the faster the donations come in, the faster a cure is found!!!!!!

  7. Dear Ringgold Family,
    Inspiration exchange - Love it! I posted yesterday, but I do not think it worked... I noted that the wind chime you spoke about was so magnificent to me and I was glad that you just let yourself feel what you were feeling and let it be. You and Angelique continue to be so strong...
    We continue to send hugs and good energy your way.
    Love, Michael and Robin Setto

  8. I will buy the book now (ok when Derek gets paid ;))...even if I dont read it right away. I didnt think of it in the terms of being helpful financially for you all. So I am glad someone thought it was tacky (although I dont). It is "pushing" me to get the book. Sooner rather than later. :)

    I did something I am very proud of. Something I have been wanting to do for so long but put off. I wrote to Dr Oz. Silly I know...but I have a show idea and I finally shared it. Raising awareness for EB and other rare childhood diseases (SMA, infant leukemia, NEHI(this is what Clara has), CHD) I am praying that they consider this idea and raise much needed awareness.

    I am thinking road see the Biltmore. Oh how beautiful. MUST GO SEE! :)

    Anon said above you are a gift. They are right you are a gift. Let me add in that Angelique and Ali are both gifts. Bella, she definitely was and always will be a gift.

    I love the sleeper hold picture. Just perfect. :)

    Sending my love to all and sweet kisses and bunches of hugs to Ali. Feel better soon Angelique.

    Denise WI

  9. Absolutely amazing photos. :)

    I am absolutely going to try try try to make it the AZ gathering, hopefully with Piper, so let us know if we can bring potluck to share to that too. And let us know what you like to eat! :)

    I hope Ang feels better soon. I'm happy to hear that Ali is doing so well. Good news on our end: my son Ari seems to be recovered from whatever illness he had all week, just in time for Halloween! :D

    Cara in Tucson

  10. Beautiful flower pics! (reminds me of how much I need to clean my laptop screen!!!)

    Glad you enjoyed the NC gathering - wish I could be there to meet you all! (I still say you should have stopped in Chicago - I would have treated you to our famous deep dish pizza for lunch!!!)

    I'm off to spend the day quilting with my friend, then off to watch some hockey tonight!

    Chicago, IL

  11. Great Photos!! That place just looks so magical. I'm glad you guys got to see it and enjoy it.

    I'm so glad you guys got to meet more of the Blog Family yesterday. That must have been cool. I am really looking forward to the CA gathering. I'm so glad there is a set date and time now so I can plan for it.

    Oh I have to tell you...I have had a "blog" for the last year and a half and had only made ONE post in it. Well, for some reason last night as I was reading your blog I felt the need to start updating it and actually doing something with it. Before I began reading Bellas and Daylons blog I wasn't really that interested in blogs and I think I'd only had about 20 views on mine. But then last night when I looked at it I saw it had 93 views and I was so embarrassed that I only had that one I posted last night...well, I posted a few pictures with a promise to post more. Ha...maybe I'll actually get comments. We'll see.

    I have to let you know that in no way do I feel it is wrong for you to sell your books at the gatherings. In fact, when I read on your blog that you were going to be selling them and signing them I was so excited and I hope you will do the same at the CA gathering.

    Oh yeah, and that picture of Bella in the "sleeper hold" is AWESOME!! I tried envisioning what she looked like when Ang described it at the MN memorial and that picture made my day! I just love seeing the pictures of Bella you post each night.

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(10 mos.)
    The McLaughlin Family
    Moreno Valley, CA

  12. Can't wait to see the photos of the gathering, what a great day for you all. And I can't wait for your next book to be about the community experience(experiment?). Also, proud of how you addressed the book Nazi, but I have to admit, I was hoping for fireworks...enjoy the next leg of your journey. Hugs to all. Jen

  13. The pictures look like paintings- the colors are so vibrant! It is so beautiful to see the full capcity of foliage. Last night sounded like pure bliss...the food must have been amazing! Gotta love that 'southern hospiltality!' Hope your day is going beautifully...well..MAN UTD is on...1-0,, yes, a beautiful day indeed!

    with all our love,
    nicole b & family

    GO MAN UTD!!!

  14. Hi there,

    I am so thrilled that Ang and Ali are doing well despite the colds they have. Thank you for letting me know I pray for you all every day all the time I cant get you peeps off my mind you are so dear to me (Us) your blog family.

    I have been trying to purchase Bellas book but to no avail I am in South Africa and it just wont let me purchase it. Is there another way that I can do it? Maybe deposit the money into your account as well as the shipping costs I really would love to read the book. Your pictures are beautiful I myself love takeing photos. As you know I live in S.A. and the wild life here is absolutely stunning. I took photos of some lions roaring for Bella and tried to email it to you but it did not go through.

    Any how safe travelling for you peeps and thank you so much for sharing. You guys are simply the best!!!!

    Lotsa love and God bless
    Sunny South Africa.

    P.S. Dont you wanna come and visit here in South Africa? ;-) Just trying my luck. You guys are an inspiration XOXOXOX

  15. Hey Tim and Ang!!! I kept checking because I wanted to see how the day went with Patrice and Jonah! I'm a bit envious that I am toooo far away to meet all of you.

    NOT tacky at all to sell the book. You aren't forcing anyone to buy. I agree and support your reasons.

    It is so nice of you to really emphasize that this community is important to you. I would not have felt it was if you did not say it's so abstract.

    Someday I hope to meet all of you. If funds were plentiful, I would have flown to NC.

    Safe travels and blessings,
    Kim from California

  16. Glad you had such an awesome gathering yesterday and I hope you sold a ton of books to help spread the word about EB and Bella. (I thought it was an awesome idea - I am giving my copy to Darcie in early November and then off to my sister inlaw at Thanksgiving.) I am sure it was so neat to meet so many blog readers in person.

    Love the pictures of Biltmore and Ang looks great - even with a cold. (Feel better!)

    Ali is a gift - just like Bella! It's good to have a little person to keep you in awe and wonder! God always knows what we need.

    Praying for you all and for safe travels.
    Tina in NJ

  17. Tim,

    I am just so delighted that 'the afternoon in the park with strangers who are true friends' was so very successful! I think this meeting must be some kind of first - for you to meet people who you know only because you chose to share Bella's story through your words and images, but to know them already in a very profound way because of that link. What a knot of a sentence, but I hope you know what I mean. (It's hard to concentrate here - my two are playing a very exuberant game of Wii near by.)

    These are such intense and busy days for you. I am truly appreciating my following you as you have moved from the hospital through such spectacular landscapes and as you slowly make your way back to California. The natural world constantly rewards me with brilliance, and I am getting a huge slice more from your amazing photos of places I have never seen before (I'm fairly new to North America and unfamiliar with so many places on this extraordinary landmass where I now happily find myself).

    Hope Ang feels a little better soon. Your schedule has been beyond strenuous for so long now that I suppose some lurgy or other was inevitable. She still looks fantastic, cold or no cold.

    Can I request a Bella photo? That one of her in your seat, in your hat, on the plane, looking for all the world to me like some coolio young singer-songwriter off on her world tour. Which, in a way, is exactly what she's doing now, taking her show on the road with you, meeting fans and friends old and new, and spreading the word about EB and what might possibly be done to take steps towards its eradication one fine day.

    What a fine, fine day that will be.

    Fondly, as always,


  18. I am offended that someone would even have the nerve to say it was TACKY to sell your book at the gathering. I think it is tacky that some people give their thoughtless opinions. OH, and my opinion was thought out about this.... please keep your hurtful comments away from this family. Shhessshh.

    I am glad your get together was so good. Again, I wish I could have been there. Much love to you and yours.


  19. Heaveno!

    knowing you are no longer physically here in nc makes me sad, but knowing that you, ang, ali, and sweet bella will forever be in my heart makes the sadness tolerable! it was so wonderful spending time with y’all...i felt like we had known each other for a very long time!

    the gathering last night was magical! seeing all those people who were there because of the life of a brave little girl was overwhelming. surely the presence of god was in that place!!!! patrice and mary did a great job organizing everything and I loved meeting baby jonah. I’m still amazed at the connection between the other susan, mary, and myself!! for those who are interested…the other susan has my niece in class - in a high school with over 1700 students - and she was also instrumental in saving the life of mary’s rescue dog! The world is indeed small!

    For weeks now I have been feeling totally useless in the fight against eb! Yes, I donated money - not as much as I would have liked to - but i felt like there had to be something else i could do. well, bless her heart (wink, wink), thanks to miss “i think it’s tacky…” lady, i’ve thought of something i can do! last night after the gathering i went to my son’s football game (yes, i made it just in time for kick-off) and saw my husband’s cousin. she is a nurse, so i asked here if she had ever treated an eb baby. she said she hadn’t ever even seen a baby with the rare skin condition. ok, stay with me, this is where miss “i think it’s tacky….” lady comes in, i thought who better than this critical care/trauma nurse to give my copy of bella’s blessings to!!!! (whew…i know that made me tired) anyway, she can read the book and pass it on to other nurses in the children’s hospital to get an introduction to the care and treating of an eb baby. hopefully, with the money you and other wonderful people are raising to get rid of this terrible disease your book’s information about caring for eb babies will be obsolete before even a third of the nurses at the hospital will be able to read it!!! now i just wish i had gotten you to sign my copy!! oh well, maybe on your next trip to w-s!!!!

    sorry for being so long-winded, but i’m just so energized after your visit that i can’t help myself! i hope ang feels better soon and that ali will stay as sweet, innocent, and funny as she is now! what a darling child!

    thank you again for sharing your families’ journey with all of us! i hope you feel our thoughts and prayers and your heartache will ease a little every day!

    safe travels my dear new friends!!!

    god bless y’all!
    w-s, nc

  20. I love your landscape pictures. They are beautiful. I love the way you edited them (want to give away your secrets?? :)) You said a couple days ago you are interested in photography (of course I can also tell by you wonderful pictures), so I wanted to give a little tip, when you are taking pictures of Ali running, dancing, moving (love all that energy), make sure your shutter speed is high (200+ the higher the better) it will stop her motion. If you are taking your pictures in manual. I love photography!!!

    I wish I was able to meet you, Ang, and Ali, but you guys already passed us.

    Thanks for taking the time to blog!!

  21. Tim, Angelique and Ali,

    Please accept my apology for not writing since you started your journey across the country. I've been wanting to, but work obligations have been consuming my time to write... but today is the day!

    First, I was to say how (capital) A-W-E-S-O-M-E I think it is that you decided to do that! You could have easily returned home after the memorial service in MN, but arranging gatherings across the country to meet other EB families and many of your blog followers is/was a FABULOUS idea! As you've already stated, the meetings provide an opportunity to meet each other, to grieve together, and to CELEBRATE the life of Bella. I wish we lived close enough to attend one of them.

    Second, I too love the photos of Bella in her days before the transplant, and I thank you for sharing new ones. In fact, the day after she passed away, we printed out several of them from your Picassa account, taped them onto "Bella's Butterfly" on our chalkboard, and my nephews added little things they thought Bella would like such as hearts and four-leaf clovers and smiley faces... and some other stuff I couldn't make out, but it was all good. :) It certainly didn't make up for the grief we were feeling at the time, but seeing happy photos of her helped us get through the first few days.

    My response to the comment that it would be "tacky" for you to sell your book at the gatherings is ARE YOU KIDDING ME???? Selling the book ISN'T about money. It's about your FAMILY. It's about BELLA'S MEMORY. It's about SPREADING AWARENESS ABOUT EB. The people who "get it" will support you and do so happily. In fact, I'm going to "happily" buy a SECOND copy of the book for all of those reasons. DONE. I feel so much better now! :)

    Love and safe travels as you continue your trip across the country. (I love road trips!!!) I hope the journey brings you comfort and new friendships that will last years to come.

    Bonnie in OH

  22. Ringgold family,

    Glad that you are safely traveling our beautiful country together and taking in the natural beauty of it all! Looking forward to meeting you when you return home to California. My baby girl, Valentina, will be a lovely pink butterfly for Halloween, inspired by sweet Bella! Continue to enjoy your travels and you are all in our thoughts and prayers each night and day!
    Shal, Sal, Val, and David

  23. Dear Ringgold family,
    Thank you so much for sharing all your thoughts and feelings as you continue on this journey. Tim, the pictures are amazing and so beautiful. i just have to comment about the selling of Bella's Blessings at these events. I think this is such a great idea and venue for this. You are spreading the word about this disease and trying to educate more people which is so important in the process of finding a cure. Thank you. Today I was out shopping and in one of the stores, I saw a display of butterflies and I thought of Bella. May you all continue to travel safely and thanks again for posting. You all continue to be in our thoughts and prayers.
    Melody and family--CA