Sunday, October 17, 2010

October 17: A New Day +6

I've been trying to get a decent shot of one of my little buddies all summer... AT LAST!


Well, another "stay at home day." Today, we took it slow. We're feeling a little under the weather, but that didn't stop us from making a Target run, which turned into a little bit of a retail therapy session! I had resisted buying new clothes for quite a while, and the new fall line is in, and I couldn't resist any longer! I love long sleeves, and zip-up turtlenecks, both of which are in full supply. Plus, I wanted to come home with some things from MN so that each time I wore them, it would remind me of this magical place, and my beautiful daughter.

MN will always hold a very dear, special, and positive place in my heart; it is Bella's launching pad to heaven! That may sound weird, and one of my friends thought I would be itching to split out of here never to return, and I can totally understand that. As you have been getting used to, I tend to work things and events until they have an uplifting context. It is harder work sometimes than others, and it's not that I step over/suppress/ignore my natural feelings. I feel them, but I do my best to not let them leave a permanent imprint on the experience. Like I said recently, as I do my grief work, the pain subsides, and the beauty remains.

After Target, it was on to another wonderfully home-cooked meal. This time, it was by my dear friends Dayna and Brent. Dayna and I were co-interns in San Diego two years ago, and she moved back here to MN where she and Brent are from this spring. They have been so wonderful throughout this journey. It was Brent's parents' house that we stayed at for our "second lake outing." Anyhow, they recently moved into a giant house out in Elk River, and it was a housewarming of sorts. Dayna's parents came, and we were so happy to finally meet them. Bryce, Dayna's brother, and his wife Amanda and their little daughter Corynn were also there. Dayna and Amanda were the ones who made the wonderful messages for Bella's walls. We had a wonderful meal, followed by a little music time! Ali busted out some Backyardigans for us, and Dayna and I took turns singing songs, and joining together on a couple as well. Amanda's baby was soooo cute. She was ALL ABOUT the music. (Shock) She was rocking to the beat with the biggest eyes and smile you ever saw. It was so sweet to see a baby so happy.

We ate a roast, while Corynn ate my nose...

It was good for my soul.

Two angels supporting each other, and the joy the feel from each other was palpable...

Back in CA, the most extraordinary friend orchestrated the most extraordinary day for Bella. Our friend Sara, who you usually see posting early and jokes about the refresh button, led 29 walkers on our local children's hospital walking fundraiser. Her goal was 5. She hoped to rasie $2000, and thought that was a stretch. She raised $4,400. She will say that it was TEAM BELLA that did it, but she was the spark. They all had cute TEAM BELLA T-shirts on, and all sported TEAM BELLA Fabulous Socks of the Day! Soo cool. In fact, two people walked up to Sara during the walk to say they read the blog! One of them even walked with the team after that. Amazing.

Then, it gets better, Sara rushed to church still in her jeans and t-shirt to tell about the walk and read a letter I wrote to our congregation, both at my request. This was not at all her plan this morning, but at the end of the walk, I called her to ask her if she would do that for me, and she changed her plans on the spot and headed out to church, and read my letter over email.

It's gonna drive Sara NUTS that I pirated this from her FB page and put it up here, but I want you all to see that face of one of the many angels in our life! Thank you again, Sara.

Check out the legacy of the Fabulous Socks of the Day! Sara bought socks for everyone...

Can you find better friends out there? We are surrounded by you, near and far. And we know that there are so many of you that would and are doing so much regardless of how close to us you are. It warms our heart to know that you all are taking up the torch for a better world, one generous, selfless act at a time. Progress happens incrementally, and if you are waiting for the big Hollywood style opportunity or calling, you are missing all the small humble ways you can be improving your world around you every day. If you like spending a day at the park or beach cleaning up trash, good for you, but why not just pick up one piece of trash a day if it crosses your path? Why not let one car in ahead of you? Why not stop your hurried pace and hold the door for one person, regardless if they look like they need it? Why not make eye contact and give a smile to go along with it? Why not wipe up the counter in the public bathroom before leaving it? There are a hundred little things you can do a day that over time, turn you into a positivity machine. The best part is, do these little things especially when there is no acknowledgement to be had. That is the best developer of character. Do something because you can, rather than for what it will bring you.

I thought I'd share with you that letter Sara read. What I want to say about it is this: For me, going to church and being "religious" is distinct from being spiritual. I feel like I can have a close, intimate, one-to-one relationship with the God of my understanding (spirituality) without being a part of a larger community that follows a certain pathway to achieving that spiritual connection (religion).

Much of my 20's were spent in this setting; me and God, one on one. It was wonderful, but after a while, it felt like I was watching a great movie alone, and I had no one to talk with about how great the film was. What was missing in my spirituality was the distinction, "Community." I wanted to go to the movie with others who would love it also, so we could enjoy it together, and talk about it, and we could let it influence our actions throughout the week till we met again. We could support each other on the ground, in the trenches, with the little things that make life beautiful. A visit to a fellow congregation member when they are sick or grieving. A cooked meal when someone is overwhelmed by life. Donated items to shelters that help people get jobs and get their own places after being homeless. This is what religion could offer me, and so I returned to church after many years away, and the members of this church, Harbor Christian Church, in Newport Beach, CA are the distinction: Community. Having set the stage like this will allow you to understand the letter even more, so here it is for your inspiration.

Dear Harbor Christian family,

As I search for how to turn the feelings of gratitude in our hearts to words, I sit here listening to one of my favorite instrumental pieces, “Twilight Echo,” by Wayne Jones. It is a solo piano piece that has the softest, gentlest keyboard sounds in the background, supporting the gentle, but beautiful melody. It is track one from my “Bella’s piano music” playlist that filled Bella’s room for many, many hours during our 99 days in the ICU, and was a favorite among a few of her nurses.

As I listen to the interplay of the piano and keyboards, I think of my family here and you, our family there. We are the piano and you are the keyboards. Sure, the melody could stand up on its own, but it would sound a little empty, a little fragile even. There would be nothing to hold the space while one note waited patiently for the previous one to finish.

When I allow my ears to listen past the piano, I not only “hear” the keyboards, I “feel” the keyboards. They are everywhere, and they are nowhere. They may be in the background, but they are really all around, and particularly underneath, supporting the delicate, butterfly-wing melodies.

I picture the flight of a butterfly, with the piano being the butterfly and the keyboards being the air that surrounds it, and gives it flight.

We can see this metaphor as all of us together providing lift for Bella as she Flies home to our Father in heaven, and we can also see that my family here is that butterfly, struggling to keep aloft, and you, our Harbor Christian family providing the spiritual lift to keep us going. You are everywhere, and you are nowhere.

If you break nowhere into two words, it can spell NOW HERE.

And so it has been between our two families, the Ringgolds and HCC, since the very beginning. You have been the air that gives us flight, through school, through parenthood, through this amazingly blessed journey with Bella. You have been there, quietly, softly lifting us up. Your love for us has never ceased, and we have always felt it.

There is a balm in Gilead

To make the wounded whole

There is a balm in Gilead

To heal the sin-sick soul

Some times I feel discouraged

And think my work’s in vain

But then my family at HCC

Revives my soul again

There is a balm in Gilead

To make the wounded whole

There is a balm in Gilead

To heal the sin-sick soul

We love you and thank you.

The Ringgolds

If you have ever had a strained relationship with religion, as many of us have, may my words offer hope. Hope in the knowing that there are good churches full of good, honest, authentic people all over the world doing great things in their communities, and hope that one of these churches might be a perfect fit for you, believe it or not. Just pray for the willingness that this be so, you'll be surprised. Don't be concerned over labels. Don't let them throw you off. There are good people in every faith, in every denomination, and good churches/temples/mosques/synagogues all over the world, despite what the media wants to tell you. There are also bad ones, and it doesn't matter what faith, what denomination, there are people who in my humble opinion have lost their way and lost track of the golden rule. How is this any different than any other human domain? There are jerks at work, there are jerk companies, there are jerks at school, there are crummy schools. There are jerks on the sports team, there are entire teams of jerks out there! So what? We don't stop working, going to school, playing the sport we love, etc. Why do we hold everyone who wants to worship and hold something sacred up to perfect standards? Don't get me wrong; again, there are bad apples in every group, but let's not throw the baby away with the bath water. The good news is that if you are an adult and considering rejoining any church, you can try them out! If you don't feel better when you leave than when you enter, don't go back! If you feel nourished, go back again.

Moving on...

The grief hit a bit harder today. It knocked me right back into bed, and it exhausted me physically and mentally today. I sobbed when I saw the slide show from the CHOC walk today. It was as intense as when I sobbed over Bella in mommy's arms as she took her last breath. I sobbed into a shirt to try and not upset too many, especially Ali. I have a big mouth (LOL) and when I wail, it's LOUD, so I need to muffle it so I can let the full force out without genuinely scaring people. I spend so much time working on my attitude, that when I need to release, I GO BIG. I GET IT ALL OUT. Who knows if its 'the right way,' it works for me, and that is really all that matters. I just miss that kid so darn much. I am listening to Colin Hay's "I Just Don't Think I'll Ever Get Over You" (thanks Dayna, it's beautiful) and it really reminds me of how unique this pain is. It's unlike anything I've ever felt. It's not necessarily worse, it's different. I think when my 5 best friends were murdered, the enormity and sudden shock of it was more intense during the first week for sure. I could barely put on foot in front of another. Now, I have a much deeper relationship with God, myself, and grief. However, this time around I am observing the grief act its brutal tidal wave of pain out on me, and it is strange. I am having a conscious experience of it, and yet in my consciousness, I am still powerless over the pain and emotions. I am also really grateful to have this medium to write about it, and know that you are out there listening, reading, relating, thinking, feeling, praying. Wow, this is like nothing I have ever experienced.

There is more physical pain coming on. I have shooting pains behind my right ear, my jaw ACHES from gritting my teeth 24/7. My heart physically hurts, like heart burn - wait - that actually might be heart burn. I eat too much at dinner! LOL. Seriously, though, my heart is beginning to ache more and more each day, and I am worried about my mental ability to function. It seems to be dwindling a skotche (I don't know how to spell all these Minnesotisms) with each day. I seem to have fewer productive lucid hours than the day before. I was hurting so much driving today that I was nauseous.

I am chronicling all this not as a cry for help, but to share the different experiences I am having, hoping that you can relate in some way, and in this relation, we both feel better about our human condition. We live in a fairy tale society where sadness and depression are met swiftly with drugs, both recreational and pharmacological. One great thing I have learned from my limited Buddhist reading is the value in suffering. This is a foreign concept to us in the west, but it really gives me strength and hope to know even the worst feelings I can have can have value. I am stronger, more confident, more patient (in certain things) than ever before. Like I said, I am in pain because I loved. The degree of my pain equals the degree I loved.

Man, I loved the #%)*&$ out of that girl! LOL.

Beauty and pain can coexist.

The pain will subside, and the beauty will remain.

Not by itself, but because I come here every day and "Show up" to you and spell it all out.

Thank you so much for continuing to show up, yourself. You are helping me heal. You are helping us all heal. Your generosity and love for us is astounding. We marvel at the pain you feel for Bella. See? You did lover her, too. You really, really did.

Thank you for loving our daughter so.

Now, who is right there, within arms reach, that you can show that same love to?

One day, Bella DID say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God night.

P.S. We still haven't figured out how to do the webcast. Ask your fb friends or chaps at work if anyone knows how to pull this off. Someone local here... check out if there is a local company that hires out to do this type of thing and see if you can get me a quote, okay? I need your help on this one. Thanks.

Ali and daddy rocking out together...


  1. Tim, I feel your grief through your eloquent words. It was so palpable when I read today's post it made me feel like Bella died all over again. But, in a few minutes when I close my books and computer for the night I'm going to head to bed and snuggle the snot out of my little girl and hold her close all. night. long. Thank you for once again reminding me how special life (and especially babyhood) is. I hope you can sleep well.
    ~Ashley and Edie in Yakima WA

  2. Glad to know I'm not the only one up late at night hitting the refresh button...!!!

    Also glad to know that you got some good retail therapy in. Target is very good for that. Somehow you always end up walking out of there with 10x more than what you went in for!

    I'm also glad that you realize how much blogging helps you sort out what goes through your head. Especially right now. The blog has been, and will always be, your voice. For better, worse, or otherwise. There are times where I wish I had a better outlet for my thoughts / feelings after tough nights at work. However a little "breakfast therapy" with my co workers does wonders :-)

    I must say, that the pic of Team Bella and their Fabulous Socks of the Day did bring a tear or two to my eyes. Every team can make awesome t-shirts and signs, but only Team Bella has Fabulous Socks!

    Chicago, IL

  3. Faith is a precious gift from God.It doesnt ease the pain or make it go away but because of this gift we know Jesus is right with us holding us in His Arms.I will always remember you all in my prayers,always. Tim and Ang,the pain is not going to go away,you will always miss your precious little Bella,go gently just hold onto each other.

  4. I will say that you had me nervous this morning. Your post is always there for me when I wake up and today I checked and no update...I was a little nervous something happened(more to your computer than you)so you couldn´t post. I even started counting back to see what time it would be there(you would think after 7 years of being 7 hours of difference between my family and I, I would just know what time it is LOL) then I thought...when does this man sleep. Anyway, wonderful post yet is my husband´s birthday and the anniversary of his father´s death, today is a day of mixed feeling for my family but always celebrate life and death both of which I think should be celebrated but not dwelled upon, just like the fact I don´t think we should celebrate only this day but all year long, everyday...I don´t write very well but I hope you understand.

    I love your pictures and they make me homesick. I won´t tell my parents about your love for thier pesky pests(aka squirrels) but I agree with you that when you live without them (and don´t have birdfeeders etc.) they are much more fun to live with and watch. I know nothing about webcasting but would love to attend via web or watch prerecorded.

    Strength and love to you all.

    Love, Jeni (Madrid, Spain)

  5. Once again you have brought me to tears with your beautiful words. I am glad that you understand the love we have for Bella. It is crazy that I can have a love for this beautiful girl and her family even though we have never met in person. But, because of your ability to open your heart to us and let us experience Bella thru you, you have allowed all of us to fall in love with your amazing daughter and family as well. Thank you so much for that.

    I love the picture of you and Ali rocking out! Awesome. And Ali looks so happy holding that adorable baby. I'm so glad you all have such wonderful friends right there at your fingertips. Stay Strong!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(9mos.)
    The McLaughlin Family
    Moreno Valley, CA

  6. Olá,
    Once again I read your blog with tears in my eyes, you are wise in the way of expressing your feelings.
    I wish you much strength to go through all that grief has stages in this process all the pain turns into beauty and gratitude for the wonderful things that life gave us Bella.
    I continue to pray for your family.

    Paula Anselmo

  7. Tim - All you need is someone with a webcam and you can livecast anything for free on this site:


  8. Tim, your love for Bella shows in every word you write. I hope you're able to work out the webcast for Bella's memorial service, I would love to be able to 'be there' by your side.

    Love to all

  9. The love you feel for your child is very special so of course the grief has to be very special too. You are very brave accepting that pain, facing it. My heart aches for you. I wish I could take your pain away. I wish she was still here.

    I miss waking up hoping that today would be the day when she turned the corner and really started recovering.

    You and your ladies are in my thoughts every day.

    Alexandra in Australia

  10. Hi Tim: As usual, you have hit the nail right on the head. My heart really does ache for you. At first you are numb and then the feelings start and boy oh boy does that hurt or what.
    Please remember that Beautiful Bella touched so many lives and so many people love your precious daughter. That has to make you feel warm inside right now.
    Please take care my friend. Your family will always be in my prayers and in my heart. Love you guys. Love and Peace. Leah's Nana

  11. Tim and Family..
    Words can not express my feelings for your family. We are a family that had never met your daughter yet we greive for her daily...and we think of the rest of you..sending prayers of strength and healing your way. Know that EB was the bond that brought us to Bella's page. Bella and your family paved the way for future EB families like us, to maybe one day live without EB..All us EB parents will have to kiss our precious children goodbye one due to this illness..I am so sorry that Bella's kiss was premature..Be proud knowing that you did all you could for your daughter. Know that we still continue to read your blog because we care soo much about the rest of your family as well. Stay strong, stay together and go through each emotion of are entitled..just don't stay in any one emotion for too long.. Keep moving forward. We know the pain you feel as we lost a daughter too several years ago. Different situation but just as painful. Don't feel bad about crying/greiving in front of Ali. It will be good for her to see that everyone else is feeling what she is feeling too. Bella and your family have touched our lives. Thank you for sharing Bella's journey with us. We are proud to have been a part of it.
    John,Beth,Casey (rdeb) and family

  12. Like there was for Bella, there will be bad days and good days...I hope today is a little better of a day for you all...when you wake up step outside, take a big gulp of fresh air, look up and smile at Bella because she is smiling down at her family, and she loves you so darn much.

    God Bless you all today, Ringgolds.
    Amanda, Bryce, and Corynn

    P.S... Corynn is still wearing Bella's butterfly bib... so special to us.

  13. Hang in there and know you are still being lifted up in prayer.

  14. heaveno!

    so sorry the heartache has permanently found its place in your heart. lifting you, angelique, and ali in prayer that your friends, family, and faith will ease the pain.

    god bless y'all!
    w-s, nc

  15. Hi Tim and family,

    Thank you for continuing to chronicle your journey; your trip through incredible loss and grief has been fascinating and helpful to me in my life. I continue to pray for you and your family during this time, through both the good and bad days. Love to all of you!

    Houston, TX

  16. Nope. I'm proud of the can post as much as you want!
    But you are right, It was team Bella (there's no I in team, remember!) I feel like I threw the stone in the water, but the ripples are all your wonderful friends and family. And strangers.
    I teared up when those 2 strangers stopped to say that they read your blog. Amazing. It was really a beautiful day, I think all of us at home needed it more than we realized. Because, like you said, we love her, too.
    It was awesome to share your letter at church. I was shaking the whole time before. But I thought of you guys...and squeaked it out without blubbering ;)
    Then, I walked to my car..shut the door and sobbed. And it felt good. I told you I wasn't good with words (and yet look at this comment!)...and you pushed me (gently) to do something I didn't think I could thank you for choosing me to share Bella, at church, but also everywhere.

  17. Good Morning Tim,

    I think of Bella throughout every day, and most of the time now, it is with a smile, and joy. But still, when the air is quiet, and I allow my mind to wander to her beautiful smile, or to her silly antics from your videos, or to the photo of Angelique holding her in her final moments, the crushing weight of her loss settles on me again.

    I think I will feel this way for quite some time. gentle with yourself, still praying for strength...for all of us. Blessings, as always.

    Regarding the webcast:
    I spoke to a friend this morning, and am sending the info he shared to you in a FB message, along with his contact info if you need it. I hope it helps!

  18. And we all cried when those cheerleaders cheered for Bella.
    I'm sorry the slideshow caused tears. I hope soon you can watch and smile ;)

  19. what a great walk your friends did. I bet bella loved seeing all those wonderful socks!!!

  20. You all continue to be in our thoughts and prayers. Know that we are with you in spirit, trying to help carry your burden of grief. Sweet Bella - we remember her every day!

    As a fellow EB family, we are so proud and grateful for you sharing your journey... your gift of helping others to understand this horrible condition and increasing awareness and funds for a cure... the ability and willingness to be so outward-focused during such intense personal challenges.

    Take good care of each other,

    Pete & Adrienne Provost, Elizabeth, Patrick & Caroline (Junctional EB)

    Palatine, iL

  21. I'm so sorry that your family is going through this, it really sucks and I can't even imagine what you are feeling and how you get through the day.

    Yesterday my boyfriend and I took our kids (My 2 year old daughter, Mae, and his sons Carter and Hunter who are 9 and 6) for a drive up the San Francisco Peaks in Flagstaff, AZ. We went on a short hike to get to a little pond while we were on top of the mountain. It was probably 60 degrees or so, but the sun was shinning through the clouds and keeping us warm. While we were letting the kids play by the pond a butterfly came by, a really pretty black one with yellow on its wings. I thought there was no way it was warm enough for a butterfly!! That's one of my favorite parts about this trail, it always has butterflies, when it is warmer they are all over, they like to stop at the little pond and get a drink. This butterfly kept coming back and my daughter loved it :) I took a picture of it, and thought of Bella when I saw it flying around so freely. Anyway, I thought you might enjoy hearing about our unexpected little friend the butterfly

    Love, Bonnie from Arizona

  22. Mickey Mouse Clubhouse is on in the living room and all I can think of is Bella. It is funny what starts my tears and I never thought Mickey would be a trigger. Other triggers are childrens tables (the kind for tea parties), piano music (by my favorite Jim Brickman), a cloud in the sky, a butterfly. Some triggers are more obvious than others and new ones pop up everyday.

    I am sorry the grief hit you so hard. But like one of your other commenters has already will have good days and bad days. I hope today is a better day. Always wrap yourself in our love and comfort. Can you feel it? Because in my heart I know Bella can. :)

    We have been struggling to find a church that fits so your comments really hit home. I would love a church were we are actually part of a family...but have yet to find the perfect fit. We havent given up and I know we will find one...I just hope it is soon.

    Sending you my all my love and sweet kisses to Ali.

    Denise WI

  23. I have no words. Just wanted to let you guys know i am still praying and thinking of you all as you walk this new life path through the grief of losing Bella and the joy of knowing she not longer suffers from EB.

    As always, you are truly an inspiration.

    Love and hugs,
    Katie from WV

  24. Just wanted to 'sign in' and say how sorry we are for your loss. I'm sure we have passed in the halls a few times at RMH or been to a few activities together as my daughter Molly had a BMT 7/12 and she likes playing with...or more like watching Ali:) We have a son who had a BMT in April 2006, so we have done this BMT road twice since both kids were diagnosed with a rare form of cancer. Even though our paths aren't the same, I can relate to much of your posts...especially the one the other day about 'questioning whether BMT was the right option'. You truly have a gift for writing. Your family continues to be in our thoughts and prayers.

  25. All I can say today is THANK YOU for being real and sharing that real with all of us. Thank You for challenging me to look beyond myself. So many of the things you have written in the past week have struck a cord with me and are helping me to look at a new direction for my life. All due to the love for / from Bella!

    I am sending my prayers all the time for Ali, Angelique and you.

    Yestrday in church after our priest gave his sermon I turned to my husband dumbfounded - my husband smiled and said "Do you think Father John and Tim are talking at night?" His message about Faith and prayer we right on the mark - just like yours.

    Thank You - Tina in NJ

  26. tim here is an easy site to do a live webcast:

    i use it to broadcast my live shows. my viewers tell me the audio comes out really good.

  27. Yesterdays CHOC Walk was amazing. I can't tell you how many times I had a lump in my throat and couldn't keep back the tears that were flooding my eyeballs. Yes, Sara is an angel- you can feel the warmth of her heart just standing, walking, talking with her. I can only imagine the heartache you are feeling...If I have pressure and bouts of sobbing, and the feeling of a ton of bricks are on your chest and restricing a full breath- I ask and pray that God caress your, Angelique and Ali's heart and hold you tighter.
    I couldn't agree more with you on your comments on faith & church. We go to Orange Coast Community Christian Church in Orange, and the congregation is just like outside of your family. May God be with you, Ang & Ali today and always. With all our love,
    nicole b & family

  28. I'm so sorry that the realization has hit so hard. We continue to pray for you all everyday, that Bella's memories and the love of all of your family and friends (us included!) will see you through! Love to all! Jennifer

  29. Please know that when you get hit with the tidal wave, we're your lifeboat, holding you up as you ride through it. My mom wanted you to know that her church in Kalispell, MT, held special prayers for your family on Sunday. It's a pretty special spiritual community, and they've adopted Bella and you. They've been with you throughout the process. And they still are with you.

    I'm checking today with the vendor who webcast analyst calls for me in the past to see if they can help. Will let you know.

  30. I know you're not asking for help with the physical aspect of your grief, but I highly recommend that you visit a dentist and have them make an apparatus for you to keep you from grinding your teeth. The one that I wear at night is called an NIT, and it is amazing what a difference this little contraption, that just hooks onto my two front teeth, can do to ease jaw pain and headaches. My dentist recommended it when he pointed out that I had ground one of my upper teeth into a "fang." My chiropractor had also pointed out the damage that clinching my teeth at night was causing to my jaw and neck. He told me to go see the dentist.

    I recently saw a study in Sports Illustrated about athletes performing better when they wore devices to keep them from clinching their teeth while shooting baskets, playing golf, etc. I've never worn my device during the day, but there really are a lot of benefits of not clinching your teeth - who knew?

    Okay, as Forest Gump said, "That's all I have to say about that."

    Angela Ulrich
    Dublin, OH

  31. Thank you for continuing to post. I am continuing to pray for y'all.

    Lauren in Spring.

  32. I don't have time to say much (though I am praying all the time for you!) but I asked our webcasting team who they would suggest (the company I work for has a division that produces webcasts -- though for financial events -- earnings etc). The two companies they suggest that may work for the memorial are or I just wanted to hop on and get you this information.

    Love and hugs,
    Kelly in Tampa, FL

    p.s. I adore Ali's letter to Bella. So well said!

  33. Tim,

    Oh, how I understand the recent change in your path through grieving. I am actually simply amazed that a spell like this hadn't happened sooner. Of course, I was delighted that you were managing these early days with such amazing clarity (your description of the volume dial having to be in balance in order to honour the pain and the pleasure is a brilliant example - I'll never forget that one; it's so useful as an image in one's head). But I think we all knew the tougher days would be somewhere in the mix.

    I too found your friend's slideshow extremely moving - both heartwarming and terribly sad. The thing with the socks got me and gripped me and made me feel choked - Bella's socks gave a lot of levity to otherwise difficult days, and the sight of her toes wrapped in those fabulous socks often provided an important reminder of the spirit and zest of that little girl beneath all the blankets and the wires and machines and such.

    The images you brought to us of Bella when she was still here and the images you've brought since her passing, which create a picture of your path through grief, are each so precious. Wherever we all are, when we're moving in and out of this blog, we are indeed all NOW HERE.

    You have given so much to all of us to work with, to think about, to benefit from, to put into practice. I hope your knowing this makes the burden of your days feel a little lighter. In the midst of your grief, you help others. How extraordinary.

    Fondly, and with true appreciation,


  34. My husband is a funeral director here in Utah and they have a local company who does webcast funerals for them when families request this service. He suggests you call funeral homes in that area - they may actually have someone they contract with that could take care of this for you.
    Kim in Utah

  35. Another great post about faith and religion. Thank you for sharing this with us. As everybody commented it's not surprise that you and Ang feel exhausted; you will defenetly need a few days in bed.
    I'm glad I had my Kleenex next to me when I watched the Choc slide. Well done to Sara and Team Bella!
    I'm so happy aunt Tracy is going to MN from Madrid.
    Love the pictures of the squirrel, friends, family and you rocking with Ali.
    Don't forget "to keep moving".
    Prayers and love,

  36. Daniel Funeral Homes, based in St. Cloud, MN provide funeral webcasting. Their phone number is (800) 358-3313. Website: St. Cloud is about 1.5 hours north-west of the Twin Cities. I'm not sure if they would be able to provide the service for you in St. Paul but they may know of another funeral home in the Twin Cities that provides the webcasting service.

    Hope this helps!

  37. Dear Tim and family,

    I feel like a broken record. I feel like every time I post that I say "I have no words to make this better, but know that I am praying for you." Today is no different. But I will pray more specifically that the Lord will ease your pain, both physically and emotionally, and that He will be your Comfort in the days ahead.

    It's so encouraging to see the body of Christ ministering to you and your family - and I pray that you will continue to receive those blessings. May all go well on Wednesday - will be with you in spirit!

    Love from TX,
    Laura (for Team A)

  38. Your pain and grief were palpable to me today as I read your post. We often toss about phrases such as "heartbreaking" or "heartache". During these times of intense emotion and grief, those words become quite if we can physically feel the strings that bind our heart snapping in two and our heart - the seat of all our emotions - just about to explode in our chest. All I can say is how very sorry I am for you and your family.

    But I also know of the balm that is in Gilead that can help assuage that grief, relieve the pain, and heal those gaping wounds. I have always adored that song, not just for the lyrics but also for that simple, plaintive tune.

    Continuing to pray for your family, especially as you make plans for Bella's celebration. I know it will be as wonderful as the girl with the fabulous socks and her fabulous family.

    With affection,

    A friend in NC

  39. Hello Tim,

    I met your angel Sara yesterday at church. She was wonderful, voice steady and holding the sign she carried. There are angels all around watching over you and your family. Such a blessing in such a sad time.

    You mentioned your physical effects of this and I wanted to give you a little something I have found helpful. Strong peppermint tea. It sure settles things.

    It is impossible not to keep checking nightly for your wisdom, maybe to also help me deal with the sadness I feel for you all. This community Bella has brought together is a miracle It's hard to let go and hopefully you'll still be out there softening this world for so many.

    When I look at my grown children and the illness of one who survived so many operations and seeing him suffer so, I believe sadness is mixed into a stew of, compassion, guilt,and hopelessness. As someone said, it never goes away. We must search for that balm. If we do, it lessens. Some don't and become sadder for the rest of their lives. I know that will not be the case with you and family as you are filled with everything you need for the coping and will share with others who need your wisdom. I like the suggestion to see the dentist for your jaw. Keep good care of you, Angelique and Ali, I know you will. Greenie

  40. Hi Tim & family, This entire blog needs to be a book!! PLEASE!! I have a hard time reading it sitting at my computer...I want to snuggle up with my cup of tea and have a good read! You are so gifted and this would BLESS so many!!

    My prayers are with you and Ang & Ali...

    Donna in NJ

  41. I have been reading your blog daily for several months and I am heartbroken at the loss of Bella. I have 3 daughters: Olivia, Skylar, and Isabella. My Bella is 7mos old. I cannot begin to imagine the pain that you and your family are going thru. I just wanted to write and let you know, that we loved your little girl. Though we never met in person, we met in our hearts and our lives, as yours, have been forever changed. I am so sorry for your pain and loss, but at the same time, so very thankful that you shared your beautiful little girl and her brave battle with us. We are praying for you and your family and for our little butterfly angel Bella. I will hold my girls closer, love them harder, say yes more often, and never take a second for granted. Thank you!
    Amber, Olivia, Skylar, and Isabella
    Reading, PA

  42. Tim, Angelique and Ali,

    I can't stop thinking about your family. I lit a candle in church last Tuesday when I was there for my daughters confirmation. I have never lit a candle in church before, but something drew me there to that area to do it. It was beautiful. I like many of your bloggers had never met Bella personally but boy did I get to know her and her great family. Your videos and pictures and blog have really chronicled her life like no other. You may be grieving now and you should be, you all loved her with all your being. My wish for your family is that your grief can someday turn to peace, I think you are well on your way. Your family has been blessed to have Bella in your lives and you will continue to be blessed by Bella everyday.

    By the way Tim, Redding is a beautiful town, you described it perfectly.

    Darcie in CT

  43. Tim -

    Your post was truly poignant. I was so genuinely touched by your words. May you and your family find peace, knowing that Bella is such a blessing.

    Your friend in Texas,

  44. Tim,
    You are so right! I did fall in love with Bella and your family. My prayers are with you, Angelique & Ali.

    Robyn in AL

  45. Praying for all of you....
    Love, Mary Chinn, Valparaiso, IN

  46. I am also still aching about for the loss of your beautifull beloved little girl. Please know that my prayers are with you still. You have amazing insights and I find it so enlightning to read here, although I wish the circumstances were different. How is Angelique holding up? God bless you!

  47. Oh how my heart hurts for your family! With a toddler of my own I cannot imagine the pain that would come with losing her! I pray that you will receive the comfort and strength that you need at this time...

    P.S.Your 5 friends were murdered?! You can't say something like THAT without telling the story! Wow!


  48. I second what Sara said above about being able to watch the slide show. And yes, I think we all cried when walking through and hearing them SHOUT for Bella! It was so awesome. I bet Bella was doing a little dance to their cheer just for her!
    Love you guys,
    The Vanderbooms

  49. Tim,

    I hope you don't mind, but I am going to "steal" with footnotes your statements about church, religion, and spirituality. You said exactly what so many of us want others to hear. So many young adults and others leave the church because they can be spiritual without being involved in the church. But the church is important because it is COMMUNITY. And, that's what we all need.

    When I read the name of your church, my mouth dropped and I said to myself, could this be a Disciples of Christ congregation? So, of course, I googled it. And, I smiled. Over the past few months I have connected with you by reading your blog about your beautiful daughter; I felt a strong connection. And, now I know. I knew you were a part of my larger Christian family. But, you are even closer than that. You are a part of my church chalice family...the Disciples of Christ. Amazing.

    I'm glad to hear that a hospital chaplain has been a part of your journey. I'm one of those who screams at TV hospital dramas, "Will someone go get the chaplain, please!!" I've often thought of trying to get one of the dramas to incorporate a chaplain into the script and then trying out for the part. But, alas, God keeps calling me to serve in a local church setting, not an imagined one on TV.

    Thank you for sharing so openly and honestly. You have done a tremendous ministry for other EB families.

    As you gather for Bella's remembrance tomorrow, please know that you and your sweet family will be in my thoughts and prayers.

    Many blessings,
    Pastor Nancy in Ohio

  50. Hi Tim, Sissy and Ali - I just wanted to say hello tonight and tell you that I think about you guys all day. I feel so so sorry for what you are going through. I will be with you in spirit tomorrow. Ryan and I were hoping to be able to attend. He just doesn't get time off for hardly any reason at this stage of his career. Hopefully the California memorial time/date will allow travel. Be gentle to yourselves. Love, Terri

  51. Ringgold family,,I just signed up with ustream so I will be "with" you guys tomorrow at 4.