Tuesday, November 2, 2010

November 2: TX EB Gathering

View of Doug and Heather's dog and the view past their back fence...


Well, we had another great gathering tonight! Despite the fact that it was raining, 5pm, and Election Tuesday, we still had a half dozen show up with close to a dozen kids in tow! The location turned out to be PERFECT as it was just the right size, had a kitchen for us, and a kids play room with lots of toys that we brought into the fellowship hall so we could all be together. The kids all got along famously! It was really great seeing them all just jump in and play together. Kids definitely keep ME young, how 'bout you?

It was really sweet watching a couple of people who came alone walk through the door. The courage it took them to carve out tonight and show up alone was awesome. I could see the look of apprehension on their face as they came in, like, "Wow, I've definitely never done THIS before!" I was quick to go right up and greet them with a big smile and a hug, and you could tell they appreciated that as much as I appreciated the fact that they had just walked through that door! Thank you to all of you who came out tonight, and thank you also to all of you who would have, if you lived closer.

I know my posts about challenging you all to come out to these events may bring some discomfort to some of you. I'm okay with that since that is the purpose; a challenge is meant to push you past your comfort zone. Now, of course I know that those of you who are in another state, or another country can't get there. I get that. I am interested in seeing how many that are within a reasonable distance will do something "out of the ordinary." Emotional blackmail? That's a little excessive. I re-read my post after I heard that one, and I don't agree. We looked at the map of all the readers of the blog and picked the largest concentrations/ metro areas and came to you. Period. We felt called to come to you, and when we got 10 yes's on the survey but only 2 actual RSVPs in TX, we were surprised. I push because I know what people say to me after they come. They say how glad they were that they did it. It's like goal setting; people think goal setting is about achieving a goal (product). No. THE MAGIC of goal setting is WHO YOU BECOME to achieve the goal (process). The product might be an event, which is transient, but the character forged to produce the event, that remains. My hope is that by pushing people to do something they might not normally do, when they find that "thing" in them that got them to do it, they realize that they can summon that same thing for anything else in their life that in the past may have seemed 'just out of reach.' I'll gladly take a little heat for pushing people to grow like that.

Jane, once again, put it best perhaps last night when describing the enemy as simply being geographical size. For example, I got a taste tonight of just how massive the Dallas/Fort Worth metro area is in size. (Texas really IS big - it's not just a saying!) It took us an hour to get to the church from Flower Mound, which is a suburb northwest of Dallas. Richardson is a suburb northeast of Dallas, but just outside the beltway. Imagine if we had to actually go into Dallas, or to the other side! My friend, Sam, who came and sang with me on Bella's song, came from Fort Worth, which is still a part of the same metro area, and it was a 3 hour round trip for him. Sam and I did our internship together in San Diego, along with Dayna in MN, though Sam and I only spent 3 months together, whereas Dayna spent the full 6 months together. Sam has a 22 month old at home and an 8 day old at home. It was so nice of Shelly, his amazing wife, to give him up for 3 hours so we could be together for this moment!

Anyhow, much love and respect was shared, along with a wonderful Texas pot luck! Coming together and breaking bread together, there's nothing like it.

My best friend Doug and me...

Moving on...

We are afraid of feeling better.

Ang and I worry about November 15. I worry about it a lot. Why? It's the day after the final memorial. It's the day life goes "back to normal." Now, we know there is no such thing, but the future we have been living in to these past weeks is the next gathering or memorial. What do we live into after the final one? That's an abyss that I just don't want to face. I know that the catch for me is to keep remaining somewhat busy, because if I just stop, I don't know if I could start again. I am afraid of how much this journey has really taken out of me, and I'm afraid to pull over and look under the hood.

The flipside of that is that we don't want to go back to our lives like Bella never existed either. I also know that that won't happen right away regardless, because frankly, our brains and bodies aren't working properly enough to support an ill-fated attempt at returning to the status quo. The simplest tasks are still taxing. We can get our energy up for a couple of hours a day, but that's about it. So much is Bella-centered that it is helping preserve her presence and ease the pain of her loss. When there are no more Bella events to focus on, well, I don't want to ever get there.

The conundrum here is that in order to manage our lives, we need to plan for tomorrow while living for today. This is tricky! Normally, we can plan events, schedules, commitments well into the future without too much trouble. Right now, that task literally hurts my brain to do! However, I realize that while I am enjoying today, much of the reason I am enjoying today is because I planned it sometime in the past! My brain right now just wants to quit planning. It hurts too much. However, I know that my mantra of "keep moving" is keeping me from totally crumbling.

I'll finish with the Providence story of the day:

It was not a direct route in which we found the church we used today. I started putting out feelers for a Dallas location while still in MN. It wasn't until I was driving around Winston-Salem that we finally locked down this spot. Ang and I really labored over where 'the best' place would be geographically in order to make it as feasible as possible for as many to make it as could. We had about 3 different churches presented to us, none of them this one. They just didn't feel right, so we asked for a church in Richardson. Sam's step-dad is a professor at TCU, and offered to help find a location for us. He spent ALL DAY Friday (literally) calling places and trying to find a Disciples/UCC church that could accommodate us on such short notice. Well, he got this church late in the afternoon, and it wasn't until late Saturday that I wrapped it up with the Pastor, David Cartwright.

So, today, Pastor David met me at the door to the fellowship hall. The door opened up to a hall way that has bathrooms and the kids play room, as well as access to the main hall. As I walked through the door, what was the giant quilt that greeted me? A six foot tapestry of hand drawn butterflies, each signed by their creator. The Pastor had no idea about the connection between butterflies and EB, but I knew right then and there we were in the right place.

God night.


  1. Wow...you never fail! You always manage to reach out, and grab the million pieces of emotions and so seemlessly mold it together and describe EXACTLY what I'm (we are) feeling (I hope that makes sense!) Really happy to hear that some of our virtual family, were able to come out and turn their 'virtual ((HUGS))' into LIVE ones! I am really really looking forward to hugging you, Ang & Ali...I mean, really really looking forward to it! I never really thought that after Nov 14th, life will have to 're-group' (if you will) and find its new normalcy...like Ang quoted- "Today is mine, tomorrow, is none of my business"...we will live one day at a time with YOU. I feel like your community/family here in So CA has doubled (if not more) and Bella's Legacy will intensify even more, and we here in CA will be present both via internet and physically in person. But, I can understand where you are coming from, in trying to think past just a few days....it's like trying to imagine how God the Creator came about...it's like your brain just stops and cannot comprehend.

    Here I go rambling on and on again. My heart is so heavy, it has become heavier and heavier over the past 23 days. I have to refer back to your post, on Oct 27- your 4 reasons why you're not devasted. Although, I have to admit, the reasons don't ease me missing, Miss Bella Ringgold. Every day, ALL day...Bella is around me...today in traffic, I was behind a green VW beetle, that had a pink outlined butterfly, right smack in the middle of the rear window. Then walking into Chapman Hospital, 2 butterflies were dancing together in an upward fashion, as I was about to enter in the double doors. Lastly, I walked into a coffee shop and there were huge mental butterflies on the walls. I think about Bella ALL day long, and I pray for you, Ang & Ali, ALL day long. I promise you (4), that I will always be praying for you! I pray that your journey home will continue to be protected and beautiful. Ok...I think I've rambled enough...but I'm trying as best I can to relay into words what I am feeling...I hope you catch my drift!

    love always,
    nicole & family

  2. ps...I love the picture of Ali & Bella...wow... I never realized how MUCH they resemble one another. I mean, they have the same eye shape, nose, lips, eyebrows...so so cute. Love them!

  3. I'm so glad you had another wonderful gathering for Bella. This is the one I would have been at, had timing been different, I would have been one of those strangers walking in alone, looking scared, but oh my how I would have loved that hug from you! Perhaps some day, my cyber friend. You are right, virtual hugs aren't enough to live on. Thankfully, we both have people to hug in real life. Some thoughts on life when you return and the memorials are over.. I'm sure you are already going to have a special place for her ashes in your house, but maybe making it extra special with flowers and pictures and then adding in a daily ritual where you all tell her about your day (or whatever you want to tell her) would help Bella stay apart of your new lives. You are all entering into a new chapter, not returning to an old one, and she's part of this new journey, too.
    lots of love,
    ft lauderdale, fl

  4. I see there are a couple of Spanish or "living in Spain" commenteers, and none seem to be supporters of the same football (or would you say soccer?) team! But we all support Team Bella!

    If you ever managed to go to Madrid to visit your sister, hop on a plane and 1 hour later you'd be in Mallorca. One R.C.D. Mallorca jersey would be awaiting you - is this blackmail?????

    I am serious now: if you email me your address, I will ship you a "little something"... I obviously can't make it to any gathering, but I want to give something back (since I can't give you my presence) for having let me be a part of your and Bella's life.


    Love and hugs

  5. So much pain-- I don't think you have to think too much past the 14th nov. I truely believe that god has great plans for you. there is work to be done. I wish you,Ang and Ali peace, sweet peace.What stunning looking daughters you have. god bless

  6. I can testify to the power of being pushed....it was a lot for me to address Harbor Christian on your behalf . I'm not kidding, I thought I was going to be sick. And I actually know you. I'm pretty sure those that were strangers before yesterday were feeling at ease the moment you greeted them. I bet, on their drive home, they cried a bit..but mostly smiled because of coming. ( oh, wait, that could've just been me, holding It together at church till the car ride home!) People grow from being challenged...I know I did.
    You guys will be challenged everyday now, I imagine. Like Nicole said, she's everywhere.
    But, you have so much love around you (literally, around the world), hopefully that brings comfort. You are, by the way, entitled to a bad day or two ;).
    I'm rambling, too.....
    Love from home.

  7. Hi Tim: Just checking in to see how one of my favorite families has been doing during this wonderful journey. I sure hope you realize how much Bella has made an impact on so many lives. People who never met beautiful Bella are still sad and grieving. Isn't that amazing?
    The world is really filled with amazing and caring people. I love it!!!!
    Please take care guys and keep up those updates, we really need them right now.
    Love you guys. Love and Peace Leah's Nana

    p.s. That picture of Ali and Bella = beautiful

  8. The Providence story = cold chills

    The picture of ninja Ali = good chuckle

    The picture of Bella and big sis = melted heart

    It's still morning and, as you can see, I've already experienced a wide range of emotions. Of course, that's not unusual after reading your posts. Glad things went well last night. Continuing to lift you all in prayer, especially as you move closer to home and all that is involved in that destination.

    Take care, sweet family, and safe travels.


    A friend in NC

  9. Getting out of our comfort zone is definately something we should all do sometimes. I have never been good with meeting new people and even though I came with friends to the EB gathering in NC it was still something out of my comfort zone. Boy, am I glad that I did it, I was so touched and blessed by that gathering and also got to meet people that I may never get to meet in the flesh again. I also believe that me getting out of my comfort zone for this is going to lead to great things. Guess I just have to get over my fear of public speaking so I can go to the hospitals to spread the word on EB care!
    I have been thinking of you very often lately and continue to pray for often. I still miss Bella even though I never met her and she has touched my heart and changed my life. Keep trusting in God to help you. I will keep you posted on our journey to educate the hospitals.

  10. Memorials continue. I'd like to share last evening's experience. I felt Bella's spirit with us during the All Souls Day Remembrance Mass at our parish, St. Columba in Durango. Her picture was on the altar, and her name was written in a special book. Both remain on the altar throughout the month of November.

    Last night's Mass was specifically planned for those whose loved ones who have "Gone before us into the Kingdom" this year. Other parishioners, who have lost loved ones before this year, joined to remember them, as well.

    It was a gentle, comforting and uplifting blend of celebrating the life of our loved ones, rejoicing in their "new life," and reminding us of God's loving presence with us in our grief.

    One very moving ritual during the Mass was the Rite of Naming Litany. The deacon would read a few of the names, and the congregation sung the response: "Rejoice and be glad! Blessed are you, holy are you! Rejoiced and be glad! Yours is the kingdom of God!"
    The deacon would read a few more names, and we would sing the response. Then Fr. Jim asked the congregation to mention other names, and parishions would call out other names. Ralph called out, "Our granddaughter, Anabella." Then the congregation sung the response.

    A reception followed the Mass, where many hugs were exchanged. Some of the folks were from the grief group that I am faciliting. A woman, who assists me with the group, turned out to be the cantor, and had an beautiful voice. The music included many of my favorites. All in all, while I shed many tears throughout the evening (and fed tissues to a weeping man sitting behind me)it was a powerful experience, and I came home still heavy hearted, but grateful for and comforted by my faith -- and parish community.

  11. I am glad you are pushing people to come. Yes it takes people out of their comfort zones. In the end they will have no regrets and will be so glad they did whatever they had to do to be there. The hurdles we faced to get to MN were huge and seemed to stack themselves against us. The day before I slipped as I stepped over something. It was one of the most painful (physically) experiences of my life. I was on the floor screaming in pain and had to roll to the phone to call Derek. Yet I made it to MN. The person who agreed to take care of my horses and dog cancelled on me at 9:30 Tuesday night. Yet we made it to MN. Derek had to take off two days from work. Yet we made it. We had to drive 5 hours one way (with a very unhappy Clara). Yet we made it. You do what you want to do in life and if some people need a little nudge...then nudge away. I will always be glad we jumped through those hurdles to be part of one of the most beautiful things I have ever experienced.

    I get hit by those moments that I am reminded of Bella. A song on the radio...gets me at the worst moments. Nothing like walking through the grocery store with tears in my eyes and on my cheeks. I hit the container with the soda tabs in it (they crashed to the floor) and actual smiled...thinking Bella wanted me to think of her in that moment (I still dont know how I managed to knock it over). The butterflies are gone now...the cold has taken over. I have a butterfly garden in the works and I will enjoy "creating" it over the winter. I even have ornaments to put on the christmas tree for Bella...butterflies.

    Sending my love to all and sweet kisses to Ali.

    Denise WI

  12. Good morning!! I for one, am SO glad we were able to make it and meet all of you. It certainly would have been easy to say "no way am I driving from McKinney to Richardson in this rain" but I know that the Lord wanted us to be there to meet with you all and share lots of smiles, tears...and children!!

    Ashleigh (my 4-yr old) has been learning Joshua 1:9 in her Pre-K class - "Have I not commanded you? Be strong and courageous. Do not be terrified, and do not be dismayed, for the LORD your God is with you wherever you go." My prayer is that you will be encouraged (especially after November 14) and that you will constantly feel the Lord's presence.

    Team A is SO thankful for you, Ang, Ali and Bella! Be safe on your next steps home - we love you!

    Laura (for Team A!)

  13. Tim and family, As I've told you before, I've been a nurse for 34 years. I've been around a lot of death, because I chose to work critical care areas. In those areas of the hospital, you are given the chance to really get to know your patients and families. Some nurses do not chose that option. I always did. When one of my patients passed, I grieved right along with their families, just not the same. Many of my patients through out the years, have left me with part of them. I may not remember all their names, but I remember them. Their lives changed a part of me. Made me who I am. Even Bella, a little girl I met but never met. I will never forget her. She left her imprint on my heart and my life.
    You will never forget her, she changed your life. Your life will be different, but better, because you had her. Once you get home, that's when your grieving will begin. Things will never be the same, but pain will turn into a good ache. That is the one that will stay with you forever. You'll keep her alive for Alli, but she will rest in your heart forever.
    I wish everyone that goes thru what you all are, had started a blog to share with the world. I think that love would take over the world and squeeze out most of the hate. I know, wishful thinking. You still have us, I hope you will keep us as a friend and sounding board. Maybe Ang should get on once in awhile and say "Hi".
    One of these days, if I ever make it back to California, I'll be able to look you up and meet Bella's family. Till then, love and prayers from a little town in Southern Ohio, Carla Spradlin and family.

  14. Tim, you alwyas have been and will continue to be a "gentle pusher"! It is a gift to be able to do it with the tact that you do. I know Grant and I both appreciate that part of you :)
    So happy you had another wonderful gathering in Bella's honor... you know she is so stoked! Absolutely love the pic of Ali and Bella. I can't wait to get me an Ali hug when we finally get to see you guys again. I think I may even long for that hug :) Praying for energy and strength for all three of you.
    Lots of Love,
    The Vanderbooms

  15. Tim,

    I don't think it is emotional blackmail at all (I went back and read that comment). You mentioned how you expect a lot from people, but you also give a lot. I think your travels and numerous "gatherings" for Bella right now are an amazing way to celebrate her life, help yourself grieve, and connect with others who also care about Bella and your family and let them grieve as well. Asking people to come to a gathering is a gift and a privilege and we are fortunate you are giving it to us, just as you've given this blog to do us everyday for so many months.

    With that said, I am pretty sure I will be able to come! Turns out Ari has an ear infection so he should be back to normal after a couple days of meds and we will be driving to Phoenix on Friday. :) I have had my moments of doubt, especially knowing Piper can't be there - I am a very shy person, so showing up just with my kiddo is a big step out of my comfort zone. But I feel an undeniable pull to meet your family and I'm listening!

    Lovely photos as always, the story about the butterfly quilt is just incredible.

    Oh, and I decided to bake cupcakes for the gathering Friday as well, I just can't resist. I came up with a special idea just for Bella (but I know Ali will enjoy them too). :)

    Cara in Tucson

  16. I'm so glad I was able to come last night and meet you and your family in person. I wish I could have stayed longer and gotten to connect more. And you are so right, when I left there I felt accomplished that I did something out of my comfort zone. I felt like I could do almost anything. Funny...since all I really "did" was pack up my kids with a pasta salad and drove to a playdate (that's what I had to tell my son to make sure he was on board with going... fortunately like you said there was a ton of kids who loved playing). I'm kicking myself that I didn't bring my Bella's Blessing book for you to sign :(

    I hope your drive through Texas goes smooth. It's a long boring one to get out of here. We've done the drive to Phoenix a couple times. Stay safe.

    Oh, and thank you for the CD. Aaron had me put it in right away and it was nice to have relaxing music to drive with on the rainy trip home.

    Amy in Plano
    (used to be Amy in Dallas but now that you're familiar with the area I'll sign off correctly)

  17. Tim, Ang & Ali,

    Thank you, thank you for coming to Dallas, it was so nice to meet you in person and just let out all the feelings I had inside me,I know I talked to my family, co-workers about Bella, but they really didn't get the feeling I had, they had to read your blog to feel the emotions of your words, so last night when I talked to you 1:1 I just couldn't hold it...and I lost it, I'm sorry, but I needed to let it out and let you know how much Bella's journey has really affected some of us. I feel so much better now, I feel relieved of this pressure I had in my chest. Thank you for listening and for counseling me as well. Thanks for the kind words you wrote in my books and for the CD. May God Bless you always. Have a safe trip to AZ!!

    Irving, Texas

  18. Awesome picture of Ali & Bella.

    Glad you got to meet more friends last night! I usually comment 1st then read all the other comments - but I hit the comment button 1st tonight and your mom's comment just summed it all up! Though the loose is not gone the comfort of our faith and knowing that our loved ones who have gone before us are with God makes it bearable.


  19. I'm so glad that the TX gathering went so well and you were able to meet so many great people and celebrate Bella's beautiful life. I am looking forward to the CA gathering. It's going to be very nice meeting your family.

    Thank you for the great pictures of the gathering. I loved seeing everyone and all the kids playing together. That was great.

    The picture of Bella and Ali is precious. I love it. They both look so happy.

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

  20. Been thinking of you all day.

    Delighted that the TX meeting was an event filled with joy.

    You're on that major leg of your journey today, aren't you? The eleven hour marathon? Moving ever onwards to AZ. And then on to CA. Homeward bound.

    Tim, Ang, Ali, it is bound to hurt as well as heal, anticipating the future and what it will feel like there. Going home has so many connotations - it's the known place, where everything is familiar. But that in itself can hurt so much too, can't it, because your home in CA is where Bella used to be and where she should be, and the big hole of her absence will no doubt be so hard to bear.

    But I take a great deal of comfort from the sentence that you and many of your readers often repeat, that little mantra of yours, that affirmation of the fact that now she has passed, she has found her way home. Her pain is over and she has left the hospital and she is home.

    Love that little girl, and her lovely sister. And her parents.

    Hope the long road today passed uneventfully and that you aren't all exhausted...

    Sending you huge, Texan-sized amounts of fondness,


  21. heaveno!

    glad to hear you had another wondering gathering last night! the pictures were great and the providence story was amazing!

    while i am certain that facing life after sweet bella must seem impossible, remember your beautiful wife and daughter. just try to imagine all the adventures that lie ahead and focus on making your lives together magical! just think, ali will be in kindergarten this time next year....her future is so bright and so wide open! think of all the people that will be touched by your music! so much to look forward to....

    praying for y'all for strength and peace in facing the future!

    god bless y'all!
    w-s, nc

  22. Oh how I wish you were coming to the Denver area! I would totally push my shy-self to jump outside of my comfort zone to come! You all are in my thoughts all day, everyday it seems. I keep seeing things that make me think of Bella as well. Drive carefully and be safe!

    Castle Rock, CO

  23. I had a Bella experience today, and I HAD to smile! I am a 2nd grade teacher, and we were discussing some vocabulary words from our story this week. The term, "gentle manner" came up as a discriptor for one of the characters in the story. Some of the kids didn't really understand what that meant, so after a little discussion, I had the kids who had an idea give examples of people or things that have a "gentle manner". One of my little girls who has had to deal with some difficult adult issues at home, raised her hand and sweetly said, "Butterflies have a gentle manner." Of course, my thoughts went immediately to Bella, and with a huge smile I said, "Yes, butterflies DO have a gentle manner."

    What I would have imagined would bring tears, actually brought happiness today. Bella will always be present for me whenever there are butterflies around, whether it be in words, pictures or nature. What a gift that is!

    Thank you again for sharing your beautiful family here. I continue to wish you, Ang and Ali peace and healing as you move through this new journey.

    P.S. One of my childhood friends will be attending your Bella gathering in AZ. I've asked her to give each of you an extra hug for me!

    Elk Grove, CA

  24. Mannnn...I can't go back and fix my spelling error! "descriptor" Heaveno! =o)


  25. Hi - the future? You'll hardly notice you are getting better until one day all the sudden you realize - you are getting better. Does that make sense? I guess at some point you look back at where you were compared to where you've come without even realizing you've made progress. Be good to yourselves, do the best you can with what you have to deal with right now, give yourselves a little pat on the back, and realize that you really are doing well, even though it is so so hard. People always say it just takes time. Yeah right. Someone put a different slant on that once by saying to me, "time takes time" - for me those words were easier to open my mind to, somehow more comforting. Be safe. I think about you every single day. Love, Terri