Wednesday, October 13, 2010

October 13: A new Day +2



Lying in bed this morning, I felt Bella warming me and attempting to ease the pain I was feeling. These are her sun rays on me.

Heaveno!

WARNING - This is a ridiculously long post as I am dealing with some nasty insomnia... make sure you have a minute...

First off, I hope I didn't leave anyone with the impression that I wouldn't still be posting daily.

I most definitely WILL be.

However, the posts will probably be rolling in later than usual as there is a wonderful mountain of correspondences and plans to manage during this time, and it takes me a few hours each night to get through it all to get to you here. I like to read every single message before I post; it puts me in the right space to write back.

This conversation we are having is causing something special to happen in each one of us. I am new to blogging, never hung out in chat rooms, and don't know much about Instant Message (the first time someone IM'd me on facebook I nearly jumped outta my seat). Perhaps you have experienced this community experience through "new media" or online before, but this is the first time I have been a part of something so intimate, so interactive, so connecting, and yet so broad in its reach. Honestly, how did y'all end up here? How did this happen? Who cares. What matters is we are here. Now. Here. And yet, where are we? I'm alone at my kitchen table at 12:57 am in Minneapolis, MN. We are not connected in space, and we are not connected in time. You will be reading this wherever it is you are (not at my table) at whatever time you read it, and it won't be as I'm typing. To borrow a concept from Conversations With God, we are nowhere.

no where... now here.

I have understood that meditation is dwelling in the space between your thoughts. Where is that place? No where. So, where are we when we are there?

Where are we when we are here?

Stay with me on this, because I'm pretty sure I'm not writing this by myself.

Where or what is the space between thought called?

Again, I ask you to think, Where are we when we are here?

We certainly aren't "out there" in cyberspace or on the net. We are not even "online." We are sitting wherever we are sitting doing whatever we are doing. Most of us are flying solo as we read and comment, meaning we are not doing it with anyone else posting at the same time. No one is hosting "Bella Blog Parties" Where you cook food, and pull up in front if the flat screen to read today's post together and talk about it.

So, where are we?

We are inside.

Inside ourselves,
Inside our hearts,
Inside our minds,
Inside our bodies,

Separate, but connected. Like cells within a body.

This duality might seem contradictory, but I want to reiterate a teaching from "Home with God," also by Neale Donald Walsch. The duality is complimentary. Here is an example:

Imagine you are in a museum, and a giant, wall sized version of Davinci's "Last Supper" hangs in front of you. The painting occurs in two ways at the same time. Walsch refers to it as "sequitaneously." That is, there is a sequential experience of the painting when you begin at one side, and slowly take in each figure in the painting, one at a time, till you finish 'digesting' all the images. However, there is also the simultaneous experience of viewing all the figures together in their totality... the broad view of the entirety of the work at once. All the information is there and can either be taken in at once, or over the course of several minutes. This is why it can be one painting and many paintings at the same time. One painting of the dinner and many paintings of apostles, woven together through the common denominator, Jesus.


It's a baby Daylon sighting!

In our case, despite our separateness (viewing from individual spaces at individual times), we have the experience of being united through a common denominator that spans both space and time. What's the one common denominator we all share? Our love for Bella. It isn't even simply Bella. There are many people who have only come here once. There are many people who know Bella and don't come here. It is the love of Bella that we all have invested in her that brings us back again, day after day, at work, at home, first thing in the morning, and last thing at night. It is that love that has brought with it the dual price tag of beauty and pain.

I know that love hurts.
I also know that love is beautiful.
I know that the beauty of love is greater than the pain of love.

So, we love. We continue to love. Despite the pain. We have witnessed such beauty through Bella, that we are not content to stop loving her because she has changed her form. Isn't it this way with anyone you've loved that's "died?" During that grief process, the pain may temporarily be more intense than the beauty, but if we allow that pain to come, experience it, acknowledge it, process it, it eventually recedes, and you know what? The beauty remains.


The CA EB families in MN: The Edlings, The Ringgolds, and The Pops!

I think of it like two songs on a turn table: Pain and Beauty. Early in the grief process, the pain is much louder, and it is hard to even 'hear' the beauty. But, as we do our grief work, it is as if the volume nob goes down on the pain while the volume of the beauty turns up. Mind you that I did NOT say, But, as times goes by... I feel like that is a booby trap. The only thing that happens when I have ignored grieving and hoped time would do the trick was that it was like the DJ just hit a mute button on both songs. Okay, great, so I shut the pain up, but I also shut the beauty out. I don't want that outcome. Not after investing myself into someone and loving them. That seems like a shame.


We got to pet lion cubs today at RMH! Tell me that's not cool...

I also try to stay as present as absolutely possible. It is far to pain-full for me to try to look back or forward during grief. I find that the amount of grief I am experiencing dictates how far into the past or future I can glance. The bigger the grief, the smaller the distance from this present moment I can look. When Bella was born, and again when she was reborn, the intensity of the grief has been so great that I can't think past a couple of hours... that's it. So, I don't. I try to stay very present in the moment. My ability to do that comes and goes in waves. For example, I couldn't get out of bed and into the shower till after 1:00pm today, but at our friends Mark and Lisa's house tonight, I felt fully connected and in the moment, and happy.


Tearin' it up on Mark's rig with Ali steppin' on the tambourine behind the amp...

Wow.


Amazing chickens on the grill at Mark and Lisa's!

That was a lot.


All the kids playing while the daddies jammed...

Of pretty deep stuff.

I don't regularly hang out in the "shallow end of the pool", as you have come to know!

When we chose to go through BMT, we wanted to document as much as possible for other prospective EB parents, so they had as much information as possible to help them with their own decisions about whether to pursue this avenue. Now that I find myself in some of the deepest grief of my life, I want to document the grief process, because frankly, we have lost touch with the very natural place death has in our world, and I feel like people all around lack good, honest, humble access to how the grieving process goes for when you lose a loved one.

There is one caveat. In the spirit of full disclosure, I say the following: my take on grief is going to be through the filter of faith. I believe in a spiritual model of existence that says the following:

we are all one collectively, but operate here on Earth as tiny portions of the One

we are spiritual beings having a human experience, not vice versa

we preceded our bodies and will supercede them once they stop working

we have the capacity to come back and experience life as many times as we choose (my take on this is, if we are eternal, why would we only incarnate once?)

we are free, prior to incarnation, to co-create experiences here with other souls in tandem, or groups to collectively experience something if we choose to

we have the ability to choose freely how we react to anything that occurs while we are here

Having said all the above, I profess to not believe any of it as "The Truth." How could I possibly have the capacity to understand, fathom, interpret, or see the awesome magnitude of the truth that only God can see? I am like a tiny ant walking down the sidewalk of the universe, and even that is a generous image of myself compared to God! From my view, the world looks the way it does, not because that is how it is, but only because that's what I can see from my vantage point. As the tiny ant, what concepts, plans, purposes exist that I cannot even fathom the existence of? What is it that I don't even know that I don't know about life? That's God's realm.

What I try to do again is just 'make up' a model of how to live that inspires me to be the best version of myself I can be. The rest is God's domain. I could be totally off the mark, I could be right on. Frankly, neither concern me so long as the model I live by produces good in the world and in my heart.

So, that is one BIG filter that changes the hue, the color of the entire experience. So, as I continue to share my journey through getting used to not having the physical Bella in our life anymore, know that I am wearing a giant pair of goggles called FAITH. I think that is pretty evident at this point, but I want to be clear about the fact that how I view things is totally subjective and influenced by many things... again... not "the truth." Maybe you could say, "My truth... The one I invent for myself that seems to operate in harmony with the world around me."

Another filter is that I work on a grief retreat as a music therapist and music minister twice a year in Phoenix, AZ, so I am no stranger to the grief process. I have also been there through my dad's death at home in hospice, been there as a music therapist playing for countless strangers (and one fellow church member) as they crossed over, and played and spoke at my 5 best friends' funerals when they were murdered on April 18, 1995 in my little hometown of 7,000 people the night before the Oklahoma City Bombing.

So, now having lost my daughter, I am experiencing a new view of this process, and I want to share it, just like I shared her, with you. Thank you for being "now here" with my whole family as we continue to walk this walk.

Okay, I am wearing out (this is a good thing, hopefully I'll sleep now), so I need to cover a few (5) more practical things (I actually have a index card with items written down so I don't forget to tell you about them! hahaha - take THAT, cognitive disturbance!)...

1) There will definitely be (at least) two memorials for sure for Bella, one here in MN, and one in Orange County. We don't know when or where yet. I promise I'll keep you posted. We have no idea how many people would come, so we don't know where to have them yet. Would you do me a favor? If you are in either MN or southern CA, would you please stop by our SURVEY and take 20 seconds to fill it out so we can get a sense of how many to plan for? This whole blog thing has really changed how many people know Bella that would want to come and meet the family and say good bye in a proper way.

2) Click on the button to make a donation to PUCK in honor of Bella. One day, this disease will be curable. Please help us turn the incurable to the curable. Please consider doing a pledge drive or fundraiser in honor of Bella. How can you pay forward what Bella gave to you?


Donate to PUCK in honor of Bella


3) Thank you's are due to so many throughout this journey, but there is one thank you we want to publicly send out tonight, and that is to our Case Manager and entire team at Anthem Blue Cross Blue Shield, our insurance provider. They have been a model for how an insurance company should take care of their clients. We have been SOOOO BLESSED by their teamwork throughout this whole experience. Thank you, Anthem! Keep up the great work, and set the bar for other companies to follow in your footsteps.

4) CLICK HERE to watch THE most beautiful tribute video one of our wonderful blog readers, Anastasia Welch, made for Bella. Be warned, you WILL need a box of tissues. It is simply amazing.

5) Last but not least, we are looking for one of our blog readers to custom design a butterfly shaped urn fitting for Bella's ashes. I just know one of you out there either knows how to make one yourself, or knows someone who could. Please comment with your email address if you are interested and/or able to provide this. We will probably get a temporary one for now, but I think it would be sweet if she rested in the hands of one of her loving follower's work.

Lastly, I have been thinking about that brash vision I closed every post with recently and how I declared it when Bella was born, long before thinking it could apply to BMT. I just kept it vague enough apparently. At the time, I thought it could mean when we, her parents, brought her home from our local hospital immediately after birth. Then, as the possibility of transplant became real, I realized that I never said what hospital we were bringing her home from. Then, after she died, I realized I never articulated who the "They" were in the sentence. Finally, the word "home" was not further clarified.

So, it really could be that "One day (October 11, 2010) Bella will say, "Yeah, I was born with this rare skin condition, but when they (The other EB angels) brought me home (to heaven) from the hospital, it went away." came true after all, just not in the context I originally saw. I like that. The moral of the story? Be very specific about your instructions to the Universe! The clearer you are, the less room for misinterpretation! Just ask my wife about sending me to the grocery story with her list... cheese? what kind of cheese? bread? what kind? apples? how many? what kind? No joke. Imagine if declaring a vision works the same way? So, careful what you wish for, and if you're gonna wish, be really clear about it!

The other 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.

70 comments:

  1. butterflyurnandcasket.com
    We would love to have you look at our urns. I have been following your blog for many months. Thank you for sharing your Bella with us, we have fallen in love with her and your family. What awesome parents God hand picked for Bella. What a gift of blessing Bella was to you,Angelique, and Alli. A blessing to all of us. Again thank you. My deepest sympathies to you and your family

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  2. Thank you for sharing your Bella with us!!! She will always remain in my heart. When you first told me in that small supply room, my knees almost crumbled, my soul cried out, and yet through it all it made no sense this was NOT possible. Your being here with your beutiful Bella showed us courage. Courage that I take everyday two rooms over .... The lights in our room flicker/turn on and off as you may have heard. I like to think it is angels flying in and visiting Elle, holding her hand and now there is a new angel amongst us. What a beauty she is with perfect skin and no more pain. I miss her, a lot. I miss running into you guys at random times in the hall and hearing the update. Anxious to tell you our update as well... I am glad to hear you are going to continue your blog. I want to tell you I pray for you to have comfort, peace, joy, and most of all may God give you strength to take care of your girls. You have been blessed... and many more blessings to come!!!!!!!! Elle's Dad

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  3. My heart is so broken I cant seem to get over it it feels like Bella was one of my own. I have so many questions and I know I should not question. You and you family were truely blessed to have Bella apart of your lives. Bella will always be in our hearts always. Bella was truely amazing love you folks lots and lots blessings.

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  4. Tim,

    Your strenth continues to amaze me. Your writings inpspire me. Your family's story has changed me.
    When I spoke to Angelique today, I told myself I would not cry, I would have the strength to get through the conversation. I cried. I didn't have the strength to get through a 10 minute conversation. I keep saying to myself how do they do it and then I looked up and I knew, we draw our strength from not only those here with us, but with God and those with him. After I hung up the phone, my 15 yr old daughter whom I just picked up from school, said "are you ok". I said yes, YES I am.

    Darcie

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  5. Tim - you are an example of strength and positivity even in a time of great sadness and loss - I wish you had been around me last year when my family suffered two great losses with in months of each other. I continue to pray that you are comforted by your wonderful memories of Bella and that you get some sleep!

    Lots of love and comforting vibes from Boston
    Tamar

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  6. Thank You Tim! What a great way you have for helping all of us to work through the grieving process. God has given you many gifts that I have seen you and Angelique share! Thank You!

    I find myself so emotional (many times overly emotional - just ask Ang) and sometimes stuck in that well of emotion so that I can not see past it to what it might be trying to teach me. I feel stuck in the "I know it all" and "Do it my way" frame of mind with my kids, but through Bella's blog have found new insight (now to apply that insight). Thank You Angel Bella, Tim, Angelique and Sweet Ali for showing me this. I will continue to pray for comfort and strength for all of you. I thank you for allowing us to share Bella and her lessons!

    Tina in NJ

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  7. Tim and Ang,
    I know you're looking for a custom design, but this is the site we purchased most of our cremation items from for Leah's ashes:
    http://www.perfectmemorials.com/search-advanced-result/?keywords=butterfly&search_in_description=1

    They have an amazing selection of butterfly themed items - and their customer service is top notch.

    You'll be surprised at the amount of ashes you'll get - with Leah; we were able to spread her ashes out amongst the family. I have 2 pendants, Jeff has one, 3 of the grandparents have one, we have two urns, both sets of grandparents have their own urn .... and I still have some ashes left in the original container the funeral home provided.

    I can't tell you how good it feels to always have some of Leah with me .... today I have the pink heart pendant with her name and a butterfly engraved into it .... people comment on it often - without knowing what's inside it.
    And I don't tell them either, I just smile and say "Thank you" and think 'Yes, she is beautiful'.

    Meghann (Leah's Mommy)
    http://littleladyleahspage.blogspot.com/

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  8. Thank you for continuing to share your journey with us even in the midst of pain. Prayers continue to go forth for your family.
    Kari
    Minneapolis

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  9. The sadness I've felt over the past two days has been profound. Not only do I miss Bella, but I miss the HOPE I had that she would get well. I took off from work on Tuesday to be with my family. Yesterday, I returned to work, but I was unable to get much done with such sadness in my heart, tears in my eyes, and a constant lump in my throat. My poor boss. I practically sobbed on her shoulder when she asked me what happened! I wondered...how can I get past this initial pain? How will Tim, Angelique and Ali get through it? And then God -- or Bella -- or BOTH -- sent me an answer to my question. After weeks of waiting, I was finally contacted by the local RMH where we applied to volunteer -- an invitation to their open house next month! The timing could be interpreted as pure coincidence, but I BELIEVE that God and Bella felt my pain at that very moment and sent me a way to lessen it, a way for me to help others in loving memory of her. And that's what I plan to do.

    Thank you, sweet Bella. I love and miss you, and your ripples in the pond will continue...

    Bonnie in OH

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  10. Thank you for still chatting to us - your family is so special.....

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  11. Tim,
    You are a truly unique and wonderful family.
    My heart still broken ... like someone told, it feels like Bella was one of my own.
    Thank you for your words ...

    With all my love
    Sandra from Portugal

    PS: I will continue visiting you ... every day.

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  12. I'm glad you're still posting. I'm continuing to pray for you. I lost a family member over 7 years ago from complications of a stem cell transplant(she had cancer), and so Bella has been especially dear to me.

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  13. you are really and truely an inspiration. we (blog readers) are leaning on you for comfort! thank you for staying with us!! sending prayers every night for your family!
    amber
    humboldt, ia

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  14. Good Morning Ringgold's family.
    It's amazing how the little Bella has touched my life.
    I have two sons, Filipe(18 months) and Gustavo (5 years), they also Bella's life became my teaching, because they already loved them before, since now that I follow your blog, I appreciate every day, every hour, every minute I spend with them.
    No parent should go through the loss of a child, I hope you find serenity and they can find peace of spirituality, which is sure to have met Bella when he decided to beat their wings butterfly to join God and all angels accompany him in heaven, she finally arrived at home free of EB, and therefore free of dressings and bandages.
    I confess it was a shock when I got near my computer at work and I was reading your blog, as I do every day since to four months ago and came across the sad news ... My God, I was shocked ... seemed to have lost one of my children, the tears flowed incessantly. Then I found myself thinking how it would be possible to feel such loss for a girl who never knew, who lived across the ocean ... the answer came next ... was only possible to feel this feeling because it was linked to Bella for the prayers that made by her and her energy and positive thoughts that sent him every day I read your journey.
    I appreciate how you shared with us the day when Bella decided to beat its wings, it was so sad and painful, but it seemed to me that you lived it in a way so serene, so touching that transpired peace instead of a day charged by weight that has a death.
    God is great in how we prepare for the hardships of living our earthly life, it is amazing how things that we support even in our dreams thought we would possibly bear.
    God bless your family and friends, and that faith is the guiding principle in your life.
    I live every day your grief will eventually be mine also.

    Fraternal embraces.
    Paula Anselmo
    Portugal

    Sorry my clumsy English

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  15. To the beautiful Ringgold Family,

    I have no words, your words are so perfect...I am a college friend of your sister Mary, Tim. She sent me your blog the day after Bella died and I am not the same. Bella, Bella, Bella is my mantra...everywhere I see Bella. My son came home the day I met Bella with an oral assignment, "Annabell Lee"...really. So I have listened to him recite about "the beautiful Annabell Lee" all week. Amazing...I just shake my head now because God knows what we all need. My husband died tragically and my children and I have a song too, and let me tell you He never has amazed me more than the timing of that song! Sometimes I have to stop the car and say outloud "Really?? Really"??? Yes, He really loves us that much. Your wisdom on grief is so right on and will really bless many.
    In my time this morning I read this and thought of you...
    "If we have died with him, we will also live with him; if we endure, we will also reign with him; if we deny him, he will also deny us; if we are faithless, he remains faithful — for he cannot deny himself". 2 Timothy 2:11-13
    I love that we can be "faithless" yet He remains "faithful"...that gives me hope.
    You are all a gift beyond words...may you and your family and your words continue to bless so many. In my prayers, Donna in NJ

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  16. Tim,
    You did it again....moments before my first class of the day is to enter my classroom...tears streaming! Beautiful thoughts on grief, amazing interpretation the vision for Bella...going 'home'.
    Many Blessings,
    The Gleason's

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  17. My prayers and thoughts are with you, Ang, and Ali. Bella has been on my mind constantly.

    On June 21st, the day before you admitted Bella to the hospital, you posted a list of things you believe. You wrote:
    "I believe that Bella will inspire many, many more people, and that this was her plan all along."

    How right you were.

    Claudia

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  18. I have yet to write to you (something I plan to rectify)but I could not pass this moment up, to send a quick message..
    Just after Bella's passing.. I had the same realization of the words you ended each post with... she did go home cured!
    P.S.Those blue eyes captivated me

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  19. Dear Tim: I am so glad that you will continue to update and let everyone know how you guys are doing.
    Your family is in my prayers and Bella will always be in my heart. I am positive that Leah and Bella are going to be best buddies. Two beautiful little girls, EB free, and having a blast in paradise.
    Your family is so beautiful, amazing and blessed. May you continue to feel God's loving arms around you at this sad, sad time in your lives. Love you guys. Love Leah's Nana

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  20. Kelly in Tampa, FLOctober 14, 2010 at 6:20 AM

    I was so sad to read of Bella's passing. I honestly couldn't get it together enough to post anything legible until now.

    The strength of your family and your faith will get you through this extremely difficult time. Please continue to take care of yourselves.

    Bella is being cradled by God and His angels right now. She feels no pain but only immense love, joy and light. You know best what is in Bella's heaven but I bet there is lots of family and friends -- some of those furry of course -- maybe a few squirrels for you Tim, lots of playing and laughing.

    She is home. She is safe and loved. She knows only joy. You will see her again. She is now your angel and is watching and caring for your family. She gives you hugs and will help you through this journey. She is the essence of beauty and love.

    I'm not a fan of computers (my computer will probably freeze now in revolt). I don't really understand them. They do things like eat work and freeze without printing. With that said, without this computer I would never have met Bella and your family. I also would never have met my wonderful husband (you know those eHarmony commercials, yeah, that's where we "met" and have now been married 7 years with two incredible little boys). So hat’s off to this new medium. I am so thankful to have met Bella and been able to share in her journey.

    Bella was such a fighter. At 16 months, what a warrior. I have never seen anything like it. Bella mobilized a world-wide community with love. She's leading the troops with love and hope and faith. In our modern world we are ever bombarded with hate and prejudice and apathy. It took a child to change that. It took Bella.

    I didn't "know" her but I miss her.

    Love and hugs and lots and lots of prayers,
    Kelly in Tampa, FL

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  21. I really don't know what to say, but I wanted you to know that I'm still praying for y'all. I pray that God sends you peace of heart, mind and soul. I also pray that you are able to get some rest.
    When my Mom died unexpectedly I kept looking around wondering how people could continue to do everyday things. I felt like my world stopped and no one else's did.
    I like what you said about being in the moment. Really that's the only place we can BE. Our minds might like to fool us by going to the past or future, but we can only BE in the present. I am now here with you. Why? I don't know. But sometimes we don't have to know, we just have to BE. I like to meditate on these words. BE STILL AND KNOW THAT I AM GOD. Say them all, then repeat, but drop the last word, until you are left with BE. That little word says a lot to me.
    I guess I did have something to say after all. LOL!
    Lots of Love,
    Mandy in Louisiana

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  22. Tim,

    Your words are amazing, truley. I am filled with so much emotion and thoughts that I cant really get the words out. I still check the blog hoping there was a mistake and I will see Bella's sweet face. Of course, I know that wont happen. I think you way you have described grief and everything in this post somehow makes me feel better. Ok, I probably not making any sense now so I will end it with. . .Thank you.

    Mary,
    Omaha, NE

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  23. Thanks for sharing from your heart with us, the world, who love Bella!!! Continuing to lift you all in prayer, for peace that passes understanding.

    Michelle in KCMO

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  24. Dear Tim,
    I just wanted to say that you amaze me. You're so full of love, strength, wisdom. I am thrilled to hear that you will continue writing as I enjoy reading your post so much. You're such a true inspiration to me in my own journey with my special needs son.
    Bella was amazing. Her story of strength, love and the way she changed lives all over the world is something to be so proud of. I know she knew how much her family loved her. She's free of EB and she's no longer in pain. I pray that those thoughts will get you through.
    Thank you for sharing Bella with us. I can definitely say that I'm different for having read her story.
    Vickie Smith
    Atlanta, GA

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  25. I am in awe of your family, your faith and your perseverance. This morning I watched a few a your videos. Tears, tears, tears. I am so happy that you are going to be continuing to blog. I will always be here.

    Diane
    Alabama

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  26. your journey has been so touching..i can't thank you enough for sharing your sweet family. i am so glad you will still be doing the blog. you still have a army praying for you guys:)

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  27. Dear Tim,
    Thank you. "the pain and the beauty" (I hear an album). You know, so many have commented on strength. I actually want to thank you for your weakness. Your vulnerability. Your "present-ness." Even as our culture has lost touch with death, so we have lost touch with our hearts' ability to grieve. Personally, I have spent so much time running from grief through busy-ness, distraction, email, addiction, etc. that is such a blessing to "be with" (whether in time or space or neither) someone who is choosing to "be in it." Thank you.

    I'm not sure if you'll have time, but I'd really like to send you guys something at RMH. Could I have your mailing address?

    Bella's life continues to be filled with such meaning and purpose... Her name, "Beauty" made me think of this song by Sara Groves.

    Sit with me and tell me once again
    Of the story that's been told us
    Of the power that will hold us
    Of the beauty, of the beauty
    Why it matters

    Speak to me until I understand
    Why our thinking and creating
    Why our efforts of narrating
    About the beauty, of the beauty
    And why it matters

    Like the statue in the park
    Of this war torn town
    And it's protest of the darkness
    And the chaos all around
    With its beauty, how it matters
    How it matters

    Show me the love that never fails
    The compassion and attention
    Midst confusion and dissention
    Like small ramparts for the soul
    How it matters

    Like a single cup of water
    How it matters



    Much love,
    Chelsea

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  28. Forever thankful to you for having shared Bella with us.
    I am feeling sort of lost in the mornings, while I drink my coffee, and Bella is not here with us anymore, to hope for her and help you through had become a beautiful "good morning routine" form me. First came Bella, only then could the day start.

    I will keep reading your blog, you write beautifully. And of course, i will keep following all "our" other EB babies and parents, because, as you well said, when we read:

    "We are inside.


    Inside ourselves,
    Inside our hearts,
    Inside our minds,
    Inside our bodies"

    Thank YOU for helping us.

    Love from the island of Mallorca, Spain

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  29. Praying for your family during this difficult and painful time of transition. I've been unable to comment since Sunday but have been following and have been praying for y'all. I am so thankful you've shared Bella with us and that she is now completely healed.
    All the very best during this overwhelming process.
    Lauren in Spring, TX

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  30. I was introduced to your lovely family a few days ago when my friend told me she was walking in the CHOC Walk for "Team Bella". Life has a purpose in God's plan and I feel part of Bella's purpose was to truly inspire all those that knew her and knew of her. I will continue to pray for your family as you go through this, but please know my life has been changed because of your baby girl. God bless!

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  31. You and your family are an inspiration and Bella was blessed to have you as her parents. My thoughts and prayers are with you during this time! I know Bella is smiling and playing in heaven! Friend in DC.

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  32. Of all your amazing posts, this one has made such a difference. It turns out I'm just starting my grief journey for my dad, because in 1980, I shut it out. This time, with my grief for Bella, I'm doing the journey, instead of stepping off the path. This time, I'm expanding my ability to love, instead of shutting it down.

    As part of that journey, I'm going to be a camp counselor for a child who's had a significant loss. I'm printing this, and bringing it with me.

    Thank you. Thank you. Thank you. We continue to send all our love.

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  33. Tim,
    You are an amazing inspiration to us all. All of your Chapman family is sharing in your grief and sending love and support your way. I'd like to share with you what I wrote in my blog about Bella the day after she went to Heaven:
    http://caitlinvaughncarlos.wordpress.com/2010/10/12/bellas-art/

    At first I was hesitant to bother you with it, but as you said that you read all these comments and that the dialog is important to you, I hope that this little tribute shows you one more time how much Bella and your family have affected us. We all love you so much and are keeping you in our thoughts and prayers.

    Love always,
    Caitlin

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  34. Thank you so much for
    continuing to write.
    I know my days wouldn't be the same, without your
    amazing words of wisdom.
    Still sending you all so much love
    Love Lolly
    UK

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  35. Tim and Angelique,
    I've been reading your blog for months and wishing I could comment. When you begged for comments I couldn't come up with anything profound enough or poetic enough to share. My fears and insecurities kept me silent, and by allowing that to happen, I missed my opportunity to speak to you and to Bella. In an effort not to miss another opportunity, I would like to share with you my Uncle Lee. I lost Uncle Lee about 12 years ago and over the years, I've envisioned him in heaven still exhibiting some of his most beloved quirks. Today, I prayed and asked Jesus to send him to Bella. When Uncle Lee first sees Bella, he will sing out, " I Seeeeeeeeee Youuuuuuuuuu," sort of like calling a pig. No child or adult for that matter, has ever been able to resist this greeting. Even writing it brings joy to me. Then he will take her by the hand and lead her to look at something interesting. No bug, rock, puddle of water or leaf will be left unturned. If she's hungry, he will peel the banana and cut it into shapes the let her sit on his lap to eat it. If she changes her mind no problem, he'll have a piece of candy in every pocket, she'll get to choose what she wants. The journey will be led by Bella, she'll be safe, very entertained and she will feel like the princess that she always has been.
    I'm truly sorry that Bella has been called home and that your family is not able to take a walk with her today. I hope you can find comfort in my Uncle Lee. He comforted me so many times in my own childhood and it makes me miss him a little less by knowing that he's spoiling Bella.
    I hope you keep writing the blog. My family and I have loved getting to know your family and we are grieving with you for Bella's loss. Thank you for sharing her with us.

    Jackie Gabb
    Lake Charles, Louisiana

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  36. Carla Spradlin (VlyIndian75@msn.com)October 14, 2010 at 11:00 AM

    Tim, you gave me a lot to think about. Being a nurse for 34 years, I've attended many death, dying, and grief seminars. You always walk away with a feeling how mortal we are. I am a Christian, and I have never really believed in reincarnation, but there have been a few times that made me think about it. Maybe, not really incarnation, in the sense of someone coming back as someone or something else. One was, I was diagnosed with breast cancer about 13 yrs ago. When they were getting me ready for surgery, I was in the radiology dept, and scared to death. All of a sudden I felt a calmness, I knew things would be ok. I had an Aunt Alice that I had always been very close to, she had passed about 5 years prior to this. When this calmness came over me, I immediately thought of her. When the nurse came into the room, I felt like I knew her. She had her back to me while working, but we were talking. When she turned around, her name tag read, Alice. I knew.
    Another time, was when our Border Collie, Belle, passed away. She was a cuddler. At first we weren't going to get another dog, but it was too lonely. We started looking at border collie rescues, and found one in Ohio. We lived in Fort Wayne, IN at the time. We went thur and the adoption process, and was approved. We loaded up the family, and our other dog (who was grieving something terrible), and headed out to Tiffin, Ohio. We got there, and they brought her out to meet us. My husband had said to the Rescue person, well, lets see if she passes the hugging test, just joking. The Rescue person said, "oh no, dogs don't liked to be hugged, they like their space". Bonnie, as this dog was named, ran out to greet us, and immediately jumped up and literally wrapped her front legs around my husband. She still does that, out of the blue. My daughter was in high school when we got her, says that Belle is in Bonnie's soul, and she had been away so long and missed us. Funny thing is, Bonnie was born the same month that Belle passed away. I still see my Belle in Bonnies eyes. She follows me everywhere, even lays outside the bathroom door when I am in the BR.
    I think you are right, if God sets us free, why can't we do or be anything. Maybe that is how God helps us heal. Maybe everytime you, Ang, and Ali sees a butterfly, it's Bella caressing you. Thank you and your family for sharing her. I wish I lived closer, I would love to attend her memorial service. But, wherever it is, my thoughts will be with you and your family. Bella will always be in my heart, just as my Belle is. Love and prayers to your family, Carla Spradlin, Portsmouth, Ohio

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  37. I find it amazing and wonderful how Bella has impacted my life. Honestly, words cannot express how I feel. I have way too many thoughts and feelings about it all to properly express just how profound of an impact she has had on me and my family. I am sad for the loss you feel; for the loss I feel and all those who love Bella. I am grateful that you allowed us to be part of her journey. I know she is at peace and that helps me in my moments of saddness. I will continue to pray for you and your family.

    I am forever changed by her life and your dedication in sharing it with us.

    THANK YOU!

    Michele
    AZ

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  38. Dear Family,

    I trundled in late last night from New England and sprinted to computer. Four days cut off from the blog were simply too much to bear and BBerry problems had just added to a sense panic and helplessness.

    I can only say I did find a moment to walk alone among the fall colors of New Hampshire and think and pray and mix my tears with the falling leaves. I am so glad to know now that your writing will continue on the blog. With all that has happened I am not sure I understand yet, WHY, but with your help I will beause if I have learned anything from Bella and you, it is that it is inevitable through faith.

    We wait for you all here at Harbor. You will come home when the time is right and providing it is appropriate (meaning our church is physically big enough to hold all the people!) we would love to have Bella's SC memorial here.

    Love,

    Brian

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  39. I'm glad that you're still going to be posting. Even though I'm of a different faith than you, I still find much meaning in the words you write. I believe you said in yesterdays' post, that faith isn't about what you have faith in, it's about having faith in something. I agree.

    I am a firm believer in the fact that things happen for a reason. You might not learn of that reason for years later, but it's there. One of the driving forces behind why I am a NICU nurse, is that I have an older sister who lived her 17 days of life in the very same NICU that I work in now. She had a multitude of cardiac defects that could not be fixed at the time. I now work with some of the very same nurses that took care of my sister 29 years ago.

    You've talked about this in your posts before. Bella has had such a purpose in life. And that purpose has not ended. She has helped me decided that my NICU needs to get an EB protocol in place, so if and when we suddenly take care of a baby who has EB, we are fully prepared. I'm even thinking that some of the EB skin protocols will work wonders on our micro preemies whose skin the first few weeks of life is so similar to that of an EB baby.

    Jess
    Chicago, IL

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  40. It is truely amazing to read such serenity and joy of living that you express in your words, despite all the grieving and all that your family has been through. I'm sure that little Bella teached you that. Sweet Bella, you and your family inspire me to be a better person.

    Carla Luxembourg

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  41. I was so glad to hear that you had such a good experience with Anthem. As a co-worker of Angelique's, and a fellow Anthem user, it's good to hear something positive about my insurance provider! I pray that I won't need to use them for anything major anytime soon, but I'm grateful that your experience with them was one less hassle that you had to deal with in addition to everything else.

    I'm jealous of you for getting to pet a lion cub. Awesome! I'm a cat lover, and so that hit me as the coolest RMH activity you've shared with us.

    I hope your insomnia subsides soon. With such an abrupt and traumatic change in your daily routine, I'm sure it will take a while for your mind and body to get into a new routine.

    Please pass on our love and best wishes to Ang. Her team at VZW is thinking of her. (Michele's touching comments just above back me up on that!)

    Angela Ulrich
    Dublin, Ohio

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  42. WOW Tim, you are so amazing. Everyday as I read your posts I have been inspired in so many ways. Whether it was because of Bella's strength and courage or your family's strength and courage.

    As I have told Bella before, I have a sister with Stage 4 terminal Brain Cancer. When we first heard about her diagnosis from the doctors on Jan. 15, 2009, I was so devastated I couldn't function anymore. I couldn't work and could barely take care of my infant daughter and husband. As time went on and my sisters strength and faith grew, I was able to grow and become stronger as well. As of now my sister is doing great. She has had 2 surgeries to remove the tumor from her brain and although they COMPLETELY removed the tumor during the 2nd surgery, it has grown back and will continue to grow back. She has had radiation therapy and continues to do Chemo monthly. That, thankfully, has kept the tumor under control, but, it continues to grow slowly but surely. As I read your posts everyday, it inspires me to have FAITH in Gods great power and it gives me the strength I need to deal with her diagnosis. I know that eventually the cancer will take her from us here on Earth, but, I also know that she will never truely leave us. Reading your blog really helps me with that reality.

    Thank you for continuing to share with us. Your blog has really become a part of MY everyday routine. Usually I can't go to bed without reading about Bella. And I visit during the day as well because your family is constantly in my thoughts and prayers. Your blog and Daylons blog are the ONLY blogs I read and the ONLY I comment on. I really feel that we have been able to connect and become a FAMILY. It's great how so many people can be so connected and have so much love although we have never "met" in person. I'm glad you feel that we are friends because you have truly become our friends as well.

    P.S. If you do a memorial here in So. Cal. I would definitely love to attend and finally meet your wonderful family in person and get to say a proper good bye to the beautiful little girl I have come to know and love so dearly!

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

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  43. I am so sorry for your loss. Thank you for sharing and continuing to share your family's journey. Bella has touched and inspired so many in her short time on earth. She will continue to inspire many.

    Holly Peters
    Cut Bank, MT

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  44. Tim I really wish I could attend Bella's memorial, unfortunately I do not live in MN or CA but I was thinking, if you could post a video of it , those of us who would love to attend , but are unable to , could enjoy the celebration of her life.

    Thank you for sharing your families lives with all of us, sending you strength and healing

    Lisa
    Houston, TX

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  45. Dear Bella's Family, I can't help but believe that Bella's story is just beginning. She has touched so many hearts already. But, with you as her mouthpiece I know that her story is far from being over. When my son died 30 years ago I was afraid no one would remember him since his life was so short. Now I can look back and see so many moments when I was able to be there for other grieving parents. I could share him with them and they could share their grief with me. Bella will be with you as my Josh is with me!

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  46. heaveno!

    i thought i posted earlier, but don't see it up. oh well, if this is a repeat just think of it as an extra prayer for sweet bella, you, angelique, and ali!

    tim, you are an amazing man! with all you have been through, you still are worried about all of us out here in the blog world. in this time of sadness you still are able to spread hope and happiness. the pictures on the post today are just great! thank you for sharing them with us.

    tim, as i read your blog today, one thing is very clear....you and a certain nephew of yours (s.p.y.) are certainly made from the same dna! i had to re-read the post a couple of times to make sure i understood what you were saying...lol! you are a gifted writer and an incredible thinker ;-)

    may god and the love of all of us who were blessed enough to share in sweet bella's journey comfort you and your family. be comforted also in knowing that sweet angel bella did indeed say "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."


    god bless y'all!
    susan
    w-s, nc

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  47. Tim and Ang, you are amazing. And I am sending you both huge hugs from my end of the planet. Your Beautiful Bella taught us all so much,she fought a long hard battle,but is now pain free. I hope that writing on this blog becomes cathartic for you, Tim,but please dont apologise for not posting,we will wait for you. Take care, lots of love Jess - South Africa

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  48. I have posted every day for at least the last month. Well tonight there are no words and so I just wanted to send you a :). We are thinking of you.

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  49. Hi, sweet family...

    I'm very late in posting tonight, but just wanted to let you all know that you are still very much on my heart. I watched the moving video tribute to Bella and it was just lovely. My favorite pictures were the ones of Ali with her little sissy...so precious and priceless.

    Take care, Ringgolds. Continuing to lift you in prayer.

    Fondly,

    Susan
    A friend in NC

    PS...About that lion cub - I am so jealous!

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  50. Hi Tim,

    Thank you so much for finding the time to think of all of Bella's Team. My heart aches so much for your Bella. I know God is with her but it still aches. You and Angelique have such an amazing strength and honesty. Thank you for showing and teaching me so much. Please know that all of us from Grandma Joanie's Daycare Fam send our love and prayers. We are thinking of you all often. I am so glad that you will continue sharing Bella's new teachings. I am dedicated for life (-: She was such a special little girl, with such a beautiful little smile. Words will never be enough to thank you and your family for the impact you have made on my mind and soul. I bow and honor you all.

    xxoo,
    The Davidson's (Braeden's mom)

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  51. Dearest Ringgold Family, so happy there will still be posts. I too, like others who have posted, am having a tough time that Bella has passed. I cried all the way to work yesterday thinking about her and your family. It was a beautiful morning and I just could not stop thinking about that lovely little girl. I know she's in a good place but it's still hard and it's still sad for those left here. I will continue to pray for your family. I'm so thankful that you have Ali because I see the joy that she brings you and will continue to bring you during these tough times. Love to all you.

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  52. There is no greater joy in knowing that little Bella is in heaven, EB free, healthy, perfect and with God. What a special child she must be for God to want her to be in heaven with him! I hope and pray that you and your family continue to be comforted during this painful part of your journey.
    Sincerely in NC.

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  53. Thank you for posting today. It was so nice to see Daylon on the post with all of you.

    Thinking of you all.
    Kim from California

    PS...we won't be able to go to Southern Ca. (I didn't realize where you are from!) We are in Sunnyvale, but I will be making a donation in memory and honor of Sweet Bella!!

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  54. Thinking of you always. How long are you planning to stay in the great state of Minnesota? You know you stick around another 3-4 weeks you can probably experience a little snow with us all. ;)

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  55. And so, in all of this. how is sweet Bella's Mommy doing

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  56. Do you mind if I give a little advice?? You can please some of the people some of the time but you can never please all of the people all of the time. Can i suggest YOU and ANG decide where you want to hold Bellas service and "they" will come.God Bless

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  57. Tim .. Sent you a message through facebook. I couldnt find your email address on here. Please read the message and let me know what you think asap...please. :)

    I have to say the video had me sobbing. It was so beautiful. Anastasia did such a wonderful job.


    Denise WI

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  58. Still praying and sending love to your beautiful family.

    Nancy

    Montevideo, Uruguay

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  59. I am so sorry about your loss and am sending lots of love, prayers and good thoughts your way. Although I have never commented before I have been following your family's journey since the beginning of the BMT. I have read and prayed for your family everyday since then and have tried to raise awareness here in New England by educating people about EB whenever I possibily could. I will continue to educate in Bella's name. Thank you for sharing this journey with so many people and touching so many lives.

    Love Peace and Prayers,
    Samantha V.

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  60. Hi Tim! To answer your question, I got here because I was reading a VERY snarky and critical blog that a former acquaintance wrote. Then I started surfing looking at "next blog". I ran into Jonah's blog. I started following it. Then I met Daylon's blog and then yours. I began enjoying reading all of your blogs and started looking at other EB kids. It was so nice to read blogs that were about important journeys. I had never heard of the hateful EB.

    I will say that although I know the realities, I was so shocked that Bella passed. Still am. I feel such a loss and I know that for me, this is really all happening through a computer. It's not part of my life. BUT it is real and it feels like a loss of someone very precious to me.

    I don't know why I ran into the EB community. I'm sure there is a reason. The gift I have received is watching (virtually) the strength of the parents. I am so inspired and in awe of all of you. I am also very humbled. I only have one child. Wanted more but didn't want to do IVF even though we have the money....I've always felt bad that our son doesn't have siblings even though we have given him an amazing community of friends. He is a very fortunate little guy.

    Bella taught me that there are worse things and challenges. That sounds simple but it just isn't. Bella also taught me that the human spirit is strong.

    I am glad to know her journey. I will honor her memory and continue praying for the peace you all so much deserve.

    I will never forget Bella. I will be donating soon so hopefully they can cure this hateful disease. Thank you again for your blog, honesty and understanding that those of us who may never meet you appreciate hearing your journey.

    Blessings,
    Kim from California

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  61. Oh Tim! I just watched the video. It was the first time I saw her photos before the transplant. What a beatiful baby she was THROUGHOUT her life!!!! So precious.
    Kim from California

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  62. Sorry, just one more thing - how beautiful it is to see the love you showed when you look at Daylon! What a gift you give to others by sharing your grieving and honoring her memory by loving others. Kim

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  63. Your family is in my thoughts and prayers. I think your spontaneous attitude of gratitude is coming directly from Bella...as she whispers in your heart, "Thank you Mommy, Daddy, and Ali for loving me so much and taking such good care of me! You made my time on earth everything I could have dreamed of and more!"

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  64. I think a part of me is still in shock, and reading you words and your strength I'm kind of ashamed of the amount of weight I've felt since bella died. A child I've never met, but I've decided the weight is just screaming for me to do something. That I need to do something so no other child ever dies of EB. If possible that's my goal, that no one else ever has to bury their butterfly child. I'm looking into it further, but I just don't know how one can witness such strength and beauty and not want to stand up and scream that these children need a cure today.
    I still talk to bella every night, though now instead of through you guys it's in my prayers for you all. Somehow bella became my window into faith. Through her I found a renewed belief in God, in good. I loved her. I know as her parents your grief is overwhelming and my heart ached for you guys. Ang, tim, ali.. you guys are amazing. You are amazing parents and strong courageous people. I'm so beyond words proud to be able to "know' you like this. Oh sweet bella girl, lovely little angel you where truely a light that came into my life and touched me.

    I'll find a way, somehow to show bella's legacy, I feel like God had a mission for me through bella.

    "and how can I stand here with you and not be moved by you"

    http://www.youtube.com/watch?v=fjDojEOiMcE

    karen in az

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  65. Hi Tim -

    I'm glad you're going to keep posting, too! Thank you for sharing ALL of your family's journey with us - it's not easy to lay everything out on the table like that!

    I've been hoping to get some profound words to share with you, Ang and Ali, but again, I have nothing. I'm sure you've had your share of Scripture sent your way, but since Bella went HOME, my mind keeps coming back to John 14:1-4:

    1"Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. 3And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4You know the way to the place where I am going."

    I hope that His words will give you more peace and comfort than any I could come up with on my own.

    We're still praying for all of you!

    Love from TX,
    Laura (for Team A)

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  66. Tim, What an amazing post! You definately know how to make an impact with your words! I just wanted to let you know that Im thinking and praying about you all! I wish I could make it to her memorial... my brother in law lives in Orange County.. it would be a good excuse to go see him but I cant. However, I will be with you guys in spirit!!

    All my love,
    Sarah in Colorado

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  67. I just watched the Bella tribute video on You Tube and I just had to tell you how beautiful that was. I am in tears. What a beautiful family.

    Lots of Love,
    Amber McLaughlin
    Moreno Valley, CA

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  68. Tim
    First of all THANK YOU for sharing Bella with us. You are such an inspiration to me. I have Bella's book and I usually close out my night with reading your blog and have been following it for some time now. I originally found your blog through Tripp's blog. I work with his aunt. I got a text Tuesday while at lunch telling me the news about Bella and the rest of the day was just glum. Thank you and your family for sharing your journey and look forward to continue reading. My prayers are with you as always.
    Michelle
    Louisiana

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  69. Tim, I have been following Bella's blog since you introduced yourself to us in class. I am a former student from West Coast University and I just wanted to say thank you so much for allowing us to hear about Bella's story and allowed her to inspire us in every way possible. After hearing about Bella and your journey with her, and your wife, and other daughter, my view on life is much more different than before. Being a nurse was always a dream of mine because I have been inspired before by my own personal experiences. But hearing about your story and about you as a parent in your shoes combined with Bella's outlook on life, I believe that it has made me a better nurse and a better person.

    While I follow Bella's blog frequently, this is my first time commenting on here. I usually comment on your facebook. But I wanted to tell you, Bella, and your family how much I appreciate you guys and your strength. I wanted to say thank you to all of you and once again I wanted to tell Bella how much she's inspired me and how brave she was. My heart continues to ache for your loss and I will miss her even though I never personally "met" her. Tim, your music therapy is so awesome and one day I hope to meet with you again however that may be. Please take care and continue to write and inspire us with your work.

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  70. Tim, I don't know where you get your energy to keep up with all you write, but it is beautiful to see. They past few months have been such a journey and you have turned it into an amazing story with your words and thoughts. I wanted to let you know that my colleague Kristin has someone who could make the butterfly urn and she said that his work is AMAZING. Take care of yourself and your beautiful ladies. Jennifer Higgins

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