Thursday, October 14, 2010

October 14: A New Day +3



Heaveno!

Well, Grandma and Nanny arrived today much to Ali's and our delight. It is nice to see them again; we really need their help and support right now. Angelique and I are fiercely independent, but we recognize how important their presence is right now. Plus, they get along GREAT so everyone enjoys everyone's company... this is not alway the case with in-laws, so we are grateful for how close Grandma and Nanny are with each other as well.

Tonight, we shared a wonderful meal with Deb and Spence to celebrate Collin's actual 4th birthday, which was today. It is just so much fun being with them, I can't even tell you. My favorite part is how much of Spence's accent I pick up when I'm around him. It literally makes me feel good to talk with a Minnesota accent! There is an honesty, humility, purity in it that is endearing to a callous east and west coaster like myself.


Today, we picked out a location for our MN memorial and a temporary urn for Bella. The location is the Enchanted Gardens Lawn at the Como Zoo and Conservatory. It is just perfect. We don't know when it will be just yet; there are still quite a few arrangements to be made, but at least we have a location that just felt perfect when we were there. MN is just so beautiful right now; I am grieving leaving here already. In my head, we were going to be here a lot longer since it seemed obvious that Bella would recover, but in her own sweet time. I was looking forward to Halloween here, sledding, bundling up, fireplaces, basements, and introducing Ali to the beauty and playfulness of snow.

See, snow is m-a-g-i-c-a-l to dogs and children. Why? Because they don't have to commute in it! Where I grew up in CT, if it snowed, they closed school, so snow also meant no school! No school, snowball fights, snowmen, snow angels, sledding, skiing, ice skating, pond hockey... winter wonderland. I remember watching my springer jumping through fresh snow, plummeting her nose into the snow piles, and delighting in the mysterious texture she floated in.

I also believed that since we were facing much bigger problems than weather, the weather would really pale in comparison. Bella's acuity and complexity required her entire medical team, myself included, to bring their very best A game to the case. I have heard hundreds of times from commenters about how thinking about Bella during their daily trials helped put things into perspective. I have a feeling that after this tour of duty, the mundane will no longer hold sway on my attention in quite the same way. I already have noticed that I simply do not even acknowledge the existence of local news, reality shows, cable news of any kind any more. They represent a disproportionate amount of attention on things that have very little to no bearing on my or my family's life. Enjoy them if they entertain you, but they are fast food information at best, and I already subscribed to the low-information diet before I came here; now my focus is located in just a different realm altogether.


See, before we came here, I hoped we would come here, slide through this procedure, cure Bella's EB, and go back to CA and forget all about this "EB thing." As another EB dad and good friend said before Bella died,"Yeah, now you not only have EB, but you have BMT as well." The way I look at it, they both killed our kid. Therefore, there is much to improve in the treatment of both, and I don't like to whine about something I'm not willing to work on myself. I have a personal credo I wrote in 2004:

Here is what you can count on from me:

I light up every room I walk into,
I touch every person I meet, and
I leave inspiration in my wake.

There are years of research needed to cause a real breakthrough in this process of turning the incurable into the curable. That research needs money. Rare diseases get hosed when it comes to funding, because let's face it, if you have a million dollars to donate to a cause that could help millions of kids a year, or one that would only help a few thousand if that, you're gonna donate where it can make the biggest difference. Unless, of course, you have a personal connection to the disease. I have the connection, but I don't have the money. I also don't do research. So, what can I offer? We already offered Bella, and that would seem to be the ultimate sacrifice, but there is more Bella plans to do, and there is more, MUCH more for us to do down here on the ground.

Mind you, I have no ill will toward EB or BMT. Both are here and both provide incredible opportunities, and both come with great sacrifice. Knowing that I am in the bitter grip of pain and grief, I know not to sell the farm, so to speak, but I can tell you that nothing else occupies my thoughts other than how to make sure in 10-20 years from now, no mother or father of a chid with EB has to feel the way Angelique and I feel right now.


I know that many of you are struggling with anger and confusion over why God would "call home" such a sweet innocent baby. This is a very central struggle in society: Why do bad things happen to good people? Personally, I don't subscribe to the notion that "She was so special, God needed Bella up in heaven with him, so he called her home sooner." What does that say about you or me? God is needy? God has favorites? Not in my world. God IS everything, how could he "want" anything? There is nothing in existence that is outside of God, so there is nothing he is without.

I also need to say that I think that getting angry at God is a little arrogant. It supposes that we are equal in understanding to God, and that we disagree with his decisions as if we know better. You can't have it both ways: if you subscribe that God is all powerful and knowing, then he simply knows more than you. Faith isn't trusting God as long as things go well. That's expectation, which is just resentment waiting to happen.

Let me reiterate that.

Faith is NOT trusting in and believing in God, as long as things go your way. That is expectation, and expectation is the root of resentment.

Faith is trusting in and believing in God IN THE FACE of events that do NOT go your way. Faith is trusting that God can simply see something you can't from his elevation. It would be like disbelieving the sailor in the crow's nest on the ship, because you can't see what he sees. He's got the better view, trust him! That would be silly, and so it is with God. If you are going to pray to God for favorable things and circumstances in your life, be sure to be grateful for whatever you get. Then, you'll always want what you get, rather than get what you want.

Again, be in a state of gratitude no matter the situation, and you will end up always wanting what you get, instead of getting what you want, because I am three days into recovering from not getting what I wanted, and working really hard at wanting what I got instead. If I can get to a space of gratitude for Bella's death on Monday, how hard is it for you to transform a complaint you have about something into a statement of gratitude?

Monday, Bella DID say to both Ang's and my dad, who are in heaven waiting for us, "Yeah, I was born with this rare skin condition, but when they (my fellow EB Angels) brought me home (to heaven) from the hospital, it went away."

God night.


The sign reads:

"The Enchanted Garden: A Paradise for Butterflies"

Like flying flowers, like delicate sculptures of stained glass -
Beauty takes wing in the butterfly.
With their stunning colors,
and graceful presence,
butterflies add a magical touch to the landscape.

Very poignant as a description for Bella and the impact she's made in the world.

50 comments:

  1. Wow. Tim - your post tonight was so honest and well spoken. I am amazed at how your gift for writing truly touches people. The understanding and connection you have in your Faith is enviable. I think of your family many times a day and check your blog - but each time i read one of your posts - well it seems that you end up comforting your readers. Ang and Ali are two very lucky people (and Bella too) to have you in their lives to make this journey with.
    I have no doubt that while the future surely will be hard, you will have the strength to carry on. I can't think of a better honor to Bella than having you continue the battle against this horrible disease. Your family will continue to be in my prayers.

    God Bless

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  2. Dear Tim, you always find the great words to express what you're feeling. I would also like to add that I never liked the saying "She is in better place now" neither. What is wrong with Mommy's and Daddy place ! I took a picture for you today, I will post it on my facebook and tag you
    Love
    Monika & Sydney, BC

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  3. I couldn't agree more with your entry tonight. Today, I spent the evening with my grandmother (we call her mama-key) and we talked, wept, hugged, and smiled through teary eyes. She lost her first born son, from a car accident in Romania, 34yrs ago. She simply stated that God's plan and will is greater than what our minds can comprehend and our brains wrap around; and although the results may not always be in our favor, HE knows what is ahead of us.
    This morning I read your yesterdays entry before I left for work, and I let it digest throughout today. I was in such deep thought and cherishing everything that Bella has taught me and is teaching me. I was in such deep thought, that I don't even remember my driving from point A to point B, C, D, etc....I was so wrapped up in how you and Ang left no stone unturned. You took priceless pictures, sweet videos, came up with a better way to wrap bandages, documented her everyday vitals, dosages, medicines, weight...anything and everything. To you Ringgold Family, I bow, salute you, take my hat off to you. You are truly amazing and what a great example you are of a family who's foundation is based on God. May the Lord continue to comfort you. We are praying dearly for you!
    ps...My mom flew in from North Carolina this past weekend, and we checked in today for the CHOC Walk. We are honored to walk in Bella's Memory.
    pss...I would love to help out with anything that I can when you return back to CA. I'd be more that happy to set up a playtime for Ali, Christian and friends.

    with all our love,
    nicole baca & family

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  4. Tim you couldn't have chosen a more amazing place to have Bellas memorial!

    Love to you all
    Shana
    (Auatralia)

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  5. I admire your grace during all this.
    Love from home. Lots. And lots.

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  6. Tim what a great place for Bella's memorial. You know I agree with your comment about wanting what you get, instead of getting what you wanted. The thought first occured to me when I had my oldest son. I was currently in nursing school and after he was born had to return 4 days after he was born/ had a near death experience. I was upset that I didn't get to spend much time with him, My only wish/want was to get some one on one time with him. Two weeks after his birth , hurricane Ike rolled through Houston, did much damage, shut down power for weeks, and took some peoples lives. But that disaster got me two weeks with my son, because School had shut down. I remember thinking, I must be the only one Happy that a hurricane ran through my life.

    After that I have thought that every disaster is someones answered prayer. You simply have to adjust your perspective.

    Continueing to send healing, and strength to your family.

    Lisa
    Houston, TX

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  7. I just love your view on faith, your view on God. You are teaching me so much, changing my perspective on my relationship with God, and for that I am truly greatful. Thank you Tim, for sharing all of this, your thoughts, your words, your journey, your... everything.

    God bless you and your wonderful family, here and up above.

    Jennifer, Sweden

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  8. Tim, I have already state this but I need to re-state: I deeply admire you! You choose such a positive way to understand and accept the adversities. Instead of waiting for the others to comfort you, you manage to get your our comfort from your faith. That is truly admirable.

    After Bella's departure, I thought I would come here to grief and console you and Ang. But instead, I come here to absorb your words of faith. Bella's work is not yet complete. It is still touching and teaching us through your words. Thank you for continuing to share you life with us.

    Continuing wrapping you all in my prayers,
    Carla, from Portugal

    PS: You found such a perfect place for Bella's memorial. I am such it will be a beautiful and touching ceremony. And I will be there, through my thoughts.

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  9. I wanted to let you know, your family has been constantly in my mind, and heavy on my heart, these last few weeks......especially so, these last few days.

    My child has a different problem, but as anyone who's ever spent any length of time at a Ronald McDonald house knows, when you have a medical kid, most of your friends have medical kids....and those relationships open your heart and soul up to some of the most intense growth, and intense pain, that I have ever experienced.

    My life, personally, has been filled with many ups and downs. Problems with addiction took me to the edge of loosing everything many times over. There was no silver lining that I could find at the time.....but God knew better.

    That was many years ago, and since then, I've spent my life helping others. See...that right there is a miracle. I know I can't see the bigger picture that God see's from where he sits, but I take a LOT of comfort in knowing that I have NEVER walked through anything difficult....never waded through any struggle, and looked back at it afterward and though, "Well, that was a waste of time." Be it personal growth, or the ability to help someone else, God has taken the most desolate and hopeless of situations in my life, and has been able to extract something beautiful and good out of them.

    My time in a PICU with my little one changed me forever. I don't think you can spend any amount of time in a PICU and not be rocked to your core. There are few places on this Earth where only a hallway can separate inspirational miracles, and unimaginable grief. I hold a huge, special place in my heart for the PICU doctors and nurses who go back, day after day.

    I absolutely LOVE the way you describe what faith is, and what it isn't. I have learned that the path that God lays out, no matter how rocky it may seem, will ALWAYS be infinitely better than one of my choosing.

    Sending prayers, love, and peaceful thoughts from upstate NY. Bella's life may have been short, but it has, and will continue to have, a big impact on this world. She has touched more lives in her lifetime, than others who live past 100.

    Be blessed.....

    Lindsay

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  10. I'm sorry I didn't write anything these past two days but it takes time to reflect about all what you write Tim. There's so much in it. I needed more than a few minutes to read the blog and the comments. Thank you to all the people that comment; that put me off sometimes because I read great experiences, deep feelings... and I don't find the words to express myself in the same way (beside that English is not my mother tongue...). When I was ready yesterday to write, there was an error on the server or somenthing like that .
    Thank you Tim for comforting us. I loved the video and I did need my Kleenex next to me.
    I'm glad you have sunny days in Minneapolis and the visit of grandma and nanny.
    Lots of love and prayers,
    Mariana,UK

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  11. What a perfect place for Bella's memorial! I was at those 5 funerals with you many years ago, and as tragic and sad as they were, Bella's passing has had a much greater impact on me, and I never even met her :D She did touch the lives of SO many people, and I know going forward her memory will serve to help many in the future learn from her journey. I wish I was out on the west coast so I could be there, but I will be there in spirit to help you celebrate Bella's life. Sending lots of love and healing thoughts to you all.

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  12. Praying that your every need today is met with perfect provision. Uplifting you all during this difficult time.

    Lauren in Spring, TX

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  13. I wish I could give all of you a hug. You and your family inspire me to do better, to look at life a little differently.

    Love from Ga.
    Scottie

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  14. You guys are such an inspiration to me. Thank you for continue blogging and for writing about your faith, it has teach me so much that i would never know how to repay you. The place for the memorial is beautiful and so fitting of her. I will continue to pray for you all!

    Gwen Matos from New York!

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  15. Tim, I still think of your family many times a day ...

    You found a perfect place for Bella's memorial, my thoughts will be with your family on the day.

    Love to you all
    Sandra from Portugal

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  16. Thanks again for sharing your heart with us. Lifting your family up continually!!

    Michelle in KCMO

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  17. Tim, Angelique, and Ali,
    I was away this past week with no computer access, and thought of Bella many many times over the week, wishing I knew how she was. When I got home late last night the only thing I wanted to check on the computer was to see how Bella was. And then I wept. I cried for this beautiful little girl who I never met but who has touched me deeply, touched so many people so deeply. I am so sad that Bella has died, but yet I know that she IS healed at last, that her rare skin disease has gone away and she is whole and happy and pain-free in heaven.
    Reading of the struggles of the families with EB children truly gives me a different perspective on my life. I want to thank you for all your honesty and insights and for sharing Bella's whole journey. And I continue in prayer for your family as you deal with your grief and move on to the next phase of Bella's work, because she surely is not finished bringing about good in this world. May God hold you now even tighter than He has been.
    Julie, in Maryland

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  18. It seems as though you have picked the perfect place for Bella's memorial. Como Park is beautiful!

    Continuing to pray for your family. Thank you for sharing your journey with us.

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  19. what a amazing site!! i sure wish i was close enough to come...

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  20. What a lovely place for Bella's memorial. And many thanks to you for sharing not only your faith, but the WHY and HOW of your faith. I can only imagine how many people you are helping to understand and deal with difficulties in their life in a positive way, rather than a negative. Many years ago, I had a dear friend who kept asking God for something and couldn't understand why her prayers weren't answered. One day she came to me greatly frustrated that she hadn't yet received her wish. I quietly suggested to her that perhaps God HAD answered her prayers already, but that it was not the answer she wanted. We always want the "yes" from God, and sometimes he tells us "no". That can be so hard to hear, and I think many people don't even listen for it. Or if they hear it, they become angry and bitter. I would imagine that in days to come it will be easy to take that angry, bitter road, and ask "Why us? Why Bella?", but you already seem to have a firm grasp on understanding that we don't get a say in God's plans. I know that doesn't make it any easier though. Please take what comfort you can in knowing how very many people are praying for you all, and in the many many souls that your sweet girl brought together in prayer. I can only imagine how the gates of heaven were ringing with prayers as all of Bella's prayer warriors stormed them! What a mighty testimony that precious girl has left for all of us.

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  21. Dear Tim,
    You are swinging punches today. Something like Solomon's reflection, "The slap of a friend is better than the kisses of the enemy." Your thoughts on faith and gratitude are rocking me. I literally feel like I've been socked in the gut (in a good way), and I can't think of anything profound to say back. Lots to think about. Thanks for living this out loud. Thank you for letting us in on this pain and this process, joy, gratitude, and sorrow.

    Want what you get... (ouch) That one stings. At the same time, isn't that the central crux of our (my) self-made misery? Different expectations, and an outright refusal to acknowledge the Divine in what is happening right now. Thank you, friend, that in the midst of your overwhelming loss you are, yes, continually giving inspiration to others. It's like lighting one pathway for other people to get through things and to fully embrace life. (sigh)

    Miss you all in CA.

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  22. Tim and Family-My heart is heavy for you all, and you are an inspiration and a great testimony to your faith in Christ! Your place for the Celebration of Bella's life is perfect!! I do not like to say funeral, because it should be a celebration for Bella, she has a new and healthy and painfree body and that fact alone is worth celebrating! And God is so good to allow all of your experiences bring you to where you are today and what you are feeling and going through. Prayers and blessings to you and your family.

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  23. Your words once again took my breath away. You are so well spoken and what you wrote today was beautiful. Lot's of food for thought! Praying for you all constantly!

    Kristi -Castle Rock, CO

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  24. What a beautiful and oh so appropriate place for our sweet butterfly! Man, I wish we could go to both memorials. I know I have not commented in the last few days...sorry, but I get frustrated that I can't find the right words to say to such dear friends. I was telling Grant how I was upset that I could not articulate my feelings and thoughts like you and he could. Because as we know, you and him are the “wives” and Ang and I are the “husbands”! So, I figured I would send you the lyrics to a song I was listening to yesterday ( a favorite of mine) that made me think about sweet Bella. When I am sad or upset, music really helps me with understanding my feelings. I really listen to the words and they help me to go “ok, this is exactly what I am thinking/feeling!” Otherwise, I just choose to ignore my feelings and pretend everything is ok… I am an expert at this! But I care too much about you guys and Bella to not try to understand all of this. The song is by Brad Paisley and features Dolly Parton, called "When I get Where I’m Going". Now there are only a few lines that I don’t relate to sweet Bella, but I feel like most of it does. It helped me feel at peace with her passing. Here you go:

    When I get where I'm going
    on the far side of the sky.
    The first thing that I'm gonna do
    Is spread my wings and fly.

    I'm gonna land beside a lion,
    and run my fingers through his mane.
    Or I might find out what it's like
    To ride a drop of rain

    (Chorus:)
    Yeah when I get where I'm going,
    there'll be only happy tears.
    I will shed the sins and struggles,
    I have carried all these years.
    And I'll leave my heart wide open,
    I will love and have no fear.
    Yeah when I get where I'm going,
    Don't cry for me down here.

    I'm gonna walk with my grandaddy,
    and he'll match me step for step,
    and I'll tell him how I missed him,
    every minute since he left.
    Then I'll hug his neck.

    (Chorus)

    So much pain and so much darkness,
    in this world we stumble through.
    All these questions, I can't answer,
    so much work to do.

    But when I get where I'm going,
    and I see my Maker's face.
    I'll stand forever in the light,
    of His amazing grace.
    Yeah when I get where I'm going,
    Yeah when I get where I'm going,
    there'll be only happy tears.
    Hallelujah!
    I will love and have no fear.
    When I get where I'm going.
    Yeah when I get where I'm going.

    Sorry the comment was so long, but I had to get that out. I love thinking how she's hanging out with her grandparents, flying around, playing and enjoying herself.
    We love you guys and can’t wait to see you!
    Buckets of Love,
    The Vanderbooms

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  25. Definitely a perfect place for Bella's MN memorial service to be held. If I lived closer, I would be there in a heartbeat.

    Jess
    Chicago, IL

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  26. Tim,
    Once again your words hit me to the core. You write so beautifully and you have such an ability to seem to talk right to me. I look forward to reading your words of inspiration every day. Your courage and strength are truely amazing.

    I absolutely love that location you chose at the Como Zoo for Bellas memorial. GORGEOUS!

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

    P.S. I love the song that "The Vanderbooms" posted before me. Do you know the name and artist? I would love to "hear" it.

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  27. The memorial site is BEAUTIFUL!
    This quote came into my head this morning and I thought of you all... "dont cry because they are gone, smile because they have lived"

    My thoughts and prayers are with you and your family

    All my love,
    Sarah in Colorado

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  28. I wish I could come to Bella's memorial. I will be there in spirit.

    What you wrote about yourself "I light up every room I walk into, I touch every person I meet, and I leave inspiration in my wake." This describes you perfectly and I think we'd all be so lucky to have one of these traits.

    I am excited to see how Bella's journey shapes your future and to follow along.

    Hugs to you Ang and Ali from Dallas.

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  29. Hi Ringgold Family,
    Tim, your words always hit my gut... you really go to a place that make people really do the work to think... thank you.
    We are thinking of you and sending good energy and love your way. You need to know that you and Angelique are absolutely amazing.
    I have saved several sentences from your blog to read every now and then. Thank you for writing.

    The place you have chosen for Bella's MN memorial looks very lovely and calm.

    Faith is NOT trusting in and believing in God, as long as things go your way. That is expectation, and expectation is the root of resentment.

    Love,
    Robin and Michael Setto

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  30. Tim -- OK, this is going to be a long post, but I feel I have to share this with you.

    I've been walking through the past several days in a stupor. Through the power of your sharing, I was just completely enrolled in Bella being well. So, when her heart stopped beating, it didn't add up. How could this have happened? How could something that brings so much pain to such a beautiful family possibly be?

    Here's what I got: Since my dad died, I've never been enrolled, really, 100 percent in any relationship. Not my husband. Tim, not even my kids. Until now. Until Bella. And in watching you not just survive this loss, but somehow thrive inside and it use it to make a difference for so many people is giving me courage to, for the first time since I was 13, get enrolled in the people I love. I'm done waiting for the other shoe to drop. It might. It likely will. And when it does, it will hurt. But you and Bella have finally taught me to accept that the love is worth the pain. The love is bigger and more powerful and more miraculous than any pain. The love your have for Bella, the faith you carry in the midst of the what has to be the worst pain I can imagine, is the most inspiring thing I have ever seen.

    Thank you for your unbelievable courage, generosity and love. Thank you for teaching me to love again, wholly and fully.

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  31. Tim,

    I found this blog through a friend of a friend of a friend on Facebook.

    I am stunned at your loss. There are no words.

    But know that in your courage to write about Bella and her condition, there is now one more person in the world who yesterday didn't know what EB was but who because of your sharing about Bella's life is now sending compassionate wishes of healing to any families afflicted.

    Wendy
    New Hampshire

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  32. I love that sign. I love the garden. I love your words. Thank you, Tim.

    We want to attend the memorial service for Bella in MN (the celebration of her life!), but the drive is much longer than we thought it would be. I'm sorry we can't be there in person, but we will be there in heart and mind.

    Yesterday, my mom donated money to PUCK in Bella's memory. We plan to do the same. I hope that rare diseases like EB receive more attention soon, too. We'll do everything we can for Bella's cause.

    Continuing love and comforting wishes to all of you.

    Bonnie in OH

    P.S. WOW. Lynne's comment today is so touching. How wonderful of her to share!

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  33. I love the site! So beautiful!

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  34. Love the line you penned "Faith is trusting in and believing in God IN THE FACE of events that do NOT go your way." So true and as humans (epecially me) we struggle with this the most - wanting life to be perfect, praying for the bad to go away, rather then accepting and being greatful! That is another lesson I am trying very hard to injest and live - thank you for your awesome perspective and the strength that you, Angelique, Ali and Bella have showed me.

    I so LOVE the place you picked for her memorial service in MN - I wish I lived closer.

    Still praying nonstop for all of you and for myself to learn and accept the lessons being taught!
    Tina in NJ

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  35. Tim, you know how there is somebody you read about that you want to meet - wellmaybe you don't but I have been known to say 'man I want to have diiner with that person' (Bear in mind for me dinner means good food, great conversation, good company and a glass of wine).

    I live a long, long way from you but I hope in my lifetime I get to take you and your wife out for dinner because you are a person I would love to have dinner with.

    God Bless,

    Bec (Sydney, Australia)

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  36. Bella's battle has happened for me in a time of ongoing great personal trial. And yes, watching her and Daylon struggle has been grounding.

    When my current set of trials began in February I had days and moments when I reached a point of being internally hysterical.

    My will is that God grant me release from my struggles. (Struggles that pale in comparison to your losing your child.)

    But, God's will is for me to grow and become a better wife, woman and mother to my children as I face what comes. I appreciate your encouragement to let go of expectation. I hope to do better at falling to my knees and saying, "Thy will be done."

    Much growth has taken place in my heart through this time. Growth to more willingly accept what comes.

    All that I have is God's. The only thing that I have to give back to him is my will.

    My choice is to look at the gifts that I have been given and have an attitude of gratitude. To show more thankfulness for the relief that comes. To live each day with a better attitude. To choose to smile and keep going.

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  37. Jack and Molly's NanaOctober 15, 2010 at 3:06 PM

    Again, your views ring home with me.
    I don't know if Sara has shared with you that her dad had lymphoma a few years ago. If he had contracted it 40+ years ago, when we were first married, he would have been a goner.
    But these days we're told that it's the "easiest" cancer to recover from, with terrific recovery rates and nearly universal treatments. And I am sure that someday there will be a cure for EB, and that your family will have played a vital role, unfortunately at the sacrifice of la bella Bella.
    I guess what I'm saying is this: all of your blog friends KNOW that Bella was a hero, and because of the tough choices you made during her life, there will come a time when your records and anecdotes will change lives. Awesome.
    By the way, the location for Bella's memorial is perfect! So glad that grandmothers are there; believe me, their trips will mean as much to THEM as they do to YOU.
    Love from Costa Mesa, as always.

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  38. I love the place you have chosen for Bella's memorial. It is beautiful and serene. Keeping your family in my daily prayers. KD MN

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  39. T, A, A, & B,
    We love and miss you!
    S, D, W, & M.

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  40. Beatiful place for Bella's memorial. I will be there in spirit. Whenever it is I will be sending peaceful thoughts to all who are able to honor Bella in person.

    Thank you again for sharing your strength Tim.

    Hard to believe it's only been three days.

    I'm so happy for you that you have clarity in knowing what your relationship is with God. Sounds like you have the inside track as to what the "right" relationship is....your gratitude for what you do have is beautiful. Aren't you lucky you have no anger? I would wish that for anyone who has had such a profound loss. Such a healing attitude.

    I honor all feelings of anyone who is going through such pain. I wish peace to anyone in any stage of their grief.

    So kind of you to share your views and personal insights. I think to read the blog of someone who has such clarity as to what arrogance is can be challenging and uplifting at the same time. Certainly is making me examine my own attitudes, which I welcome!

    I am curious if you wish you had not done the BMT?

    You have my prayers and well wishes. You also have our financial support as we add EB to our charity list in 2011. God Bless you and your family.

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  41. Dear Tim and Angelique - you gave Bella life, not once but three times....first at birth, then through Ali with the BMT you gave her the chance for a life less painful, and finally a peaceful, pain free, heavenly life with God. You made thoughtful, intelligent, loving, excellent decisions all along the way. You did your very best to cherish her, protect her, heal her, shower her with love, and comfort her, each other, and all of us here. Thank you for all you've given.

    I hope Ali is doing all right. It's hard to know how young children assimilate it all. I thought the picture of her sleeping on top of daddy might have been her simple way of not letting anyone else she loves get away. Bet she will be so glad to get back home to her puppy.

    Bella's song has been going through my mind constantly, and tears come and go. I walked by some flowers today and a "flock" (for lack of a better word) of butterflies flew out of them.

    Glad your moms are with you. Peace to you. Love Terri

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  42. Tim,
    I just wanted to let you know that I find myself thinking about you and Ang and Ali multiple times a day, just as I did when Bella was still here. I'm still sending positive, supportive thoughts too, because you guys need them just as much as Bella did. I also wanted to thank you for setting up the donate to Puck link. I'm a student right now with debt 20 feet over my head, but I gratefully donated to PUCK today. I couldn't have ever anticipated the feeling of loss I have been feeling, as well as the NEED to DO something right NOW, and I was grateful to have a place to make my small donation in Bella's memory.
    Thank you again,
    Ashley in Yakima WA

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  43. The Enchanted Garden looks like a beautiful place to honor your sweet little girl... very fitting.

    Still praying for your family.

    Tina (NJ)

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  44. Since Tuesday, many of my classmates and friends have read Bella's story...and I've been more than happy to share with them how I came across your blog and got to "know" your family. Seeing how Bella continues to change the world warms my heart...I hope it offers some small healing power for you.
    The Como Zoo and Conservatory is a beautiful location, absolutely perfect. I'm awaiting the memorial plans as I would love to attend.
    Thank you again for sharing Bella with all of us.

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  45. Tim and Family,
    An old friend here from Redding, CT just wanting to let you know I am thinking of you and your family. Keeping you all in my prayers. I wake every morning to a note on my dresser that says "be in gratitude" and your journey has me appreciating the blessings in my life that much more. I look forward to reading more of your posts. Be well and take care of each other.
    Best,
    Ann Marie Vena (Baron is my married name)

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  46. Hi Tim-

    MN is definitely beautiful - much greener than North TX!

    You nailed it on the head about faith. But it's still SO hard to swallow. And I'm just a person who hasn't even met Bella - I cannot imagine what you are going through. But I KNOW that the Lord has not left you and He will continue to strengthen you, Ang and Ali.

    Sending many prayers your way!

    Love from TX!
    Laura

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  47. The Ringgold Family -

    I think the site you have decided for Bella's memorial in MN is absolutely beautiful. I just have not been able to stop thinking about Bella. I have spent all my spare time yesterday and today going back through the blog to catch up on your story from the beginning as I did not start learn of your blog until this past July. Again, your strength and positive attitude are more than inspiring. Thank you so much for sharing your story and impacting the lives of so many people!

    Please take care. From your friend in Texas,
    Debbie

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  48. Hi, sweet family...

    So glad the grandmothers are there with you. What a gift our families are, especially during times of great need.

    The place you've chosen for Bella's service is just lovely and a perfect place to celebrate the life of your little girl who "enchanted" all of us. Sure wish I could be there, but I certainly will be with you in thought and spirit. And I'm sure you'll do your usual wonderful job of recounting the events to those of us who continue to love and support your family.

    Wishing you all a peaceful weekend.

    Fondly,

    Susan
    A friend in NC

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  49. I light up every room I walk into,
    I touch every person I meet, and
    I leave inspiration in my wake.


    I think this fits Bella too. She did all of those things.

    I started to think today that maybe you would wonder how someone that has never met Bella could actually miss her. I miss coming here and seeing her pictures, her story and her "spirit". I miss the hope for Bella that I carried with me and filled me everyday.

    I just learned recently that God is not at fault when a child is sick or is taken too soon. It was a huge moment for me as I realized I would place the blame on Him and when I figured out what I had been doing all I could was cry. I havent gotten mad at God for what happened to Bella. That doesnt mean I havent gotten mad. I have. The difference is this time I didnt get mad at someone I got mad at the injustice.

    Thinking of and sending my love to you, Ang and Ali (kiss this sweet girl for me).

    Denise WI

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  50. Your strength is so unbelievable. I am grateful for your courage to share your journey with the world. Thank you for creating an opening for human beings you don't even know to step up in their faith and in the world cause now more than ever we need it!
    Bella is in my heart, always and forever.
    Sweet Butterfly discovering the rest of eternity!
    I love you guys,
    Wendy Burkhard

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