Tuesday, October 19, 2010

October 19: A New Day +8



Heaveno!

Well, it's 12:32 am, I'm getting to the blog exactly one hour earlier than last night! That's a good thing. I am beat. I did get a nap in this evening before rehearsal, so that was good. We had a busy day here today. Grandma and Nanny shipped off all our extra wound care supplies to a mom in TX whose insurance company arbitrarily stopped covering her sons bandages. When asked why, the insurance company said (and this is no joke)," We really shouldn't have covered them in the first place; we just didn't think he was gonna live this long." Her son is a teenager.

Folks, if you have any political connections, PLEASE lean on them to advocate for EB patients to AT LEAST have their bandages covered by insurance! Un - be - lieve - able.

So, good to pass them on to someone who needs them, and good to get some square footage back in the li'l ol' apartment! Nanny and Grandma also packed up a bunch of toys, and helped watch Ali. No wonder they are sleeping well right now. Thank you, Grandma and Nanny!

We also got some more work done solidifying the program for tomorrow. I hope it does Bella justice. It will be hard to capture the magnitude of who Bella was in her short lifetime. I don't want it to be too long and tiring, and I'm afraid it won't really scratch the surface of her impact. I know, I know, I'm sure it'll be fine. I just want it to be the best it can be for her, ya know? (I am still writing my part of the eulogy, even as I'm writing you!) I toyed with skipping tonight's post to get stuff done, but then I wouldn't get to share about the important stuff of the day...

...like...


we brought Bella home today. It was really weird for Ang and me at the funeral home picking her up. It just seemed so surreal, as has so much of the past 9 days. The gentleman we worked with could NOT have been nicer, and the urn we picked out turned out to be just perfect. When we came home, we had a short ceremony to mark the occasion, and Nanny and Grandma turned our little end table in our living room into a little "shrine" for lack of a better word. What was truly amazing was that when we put the urn in front of those butterfly wings I won at bingo my first night here that hung in Bella's room throughout her journey, it made a perfect butterfly!


Yeah, I know... totally gives you the chills, right?


Shortly after, we met the Pops and Edlings in the park across the street for a balloon release. Both families chipped in and wanted to do this to celebrate our EB family and to celebrate our Bella's fight. All three families have been bonded by the fact that all 3 of our babies ended up in ICU on ventilators and dialysis, and all three had/have VOD. The young ones have not faired well in this study so far. Anyway, we brought Bella and the balloons, and read the ceremony that our chaplain, LaDonna, prepared for Bella when she died. After the ceremony, we set the balloons free, and while they ascended, I played "Amazing Grace" on my native american flute.




These amazing images were taken and edited by Daylon's mom, Jennifer Edling...

What was really neat was that the big butterfly balloon, upon release, decided not to go up to the sky with its buddies. Instead, it made a BEE LINE for the big tree in front of RMH and planted itself in the middle of it! Ali was sad that it got stuck, but I explained to her that Bella's spirit was in those balloons , and part of her spirit was going up to heaven, but part of it wanted to stay behind and watch out for her, for Daylon, and for Elle. She liked that idea, and it reminded me of the sheer magnitude of what's possible in life after death.

Now, remember, I don't purport to KNOW what happens after death at all. I simply believe in a spiritual model that lifts me up, and doesn't require your agreement or approval to do so. It's the gift I give myself called... you guessed it... FAITH. I love that I CAN believe that a part of Bella can stay and watch over us from nearby while a part of her can go home to her family in heaven. I love that I CAN believe that I will be reunited with her when I die and that in that moment, all this "time" in between will seem like a snap of the finger. I love that I CAN believe that she came here to teach us all about strength, perseverance, love, commitment, priorities, and faith. I don't HAVE to believe any of that, but you know what, by believing in it, it makes me a better person, gives me hope, inspires me to do good for others, and if that is the result of faith, I'll take it any day of the week over believing in "nothing."

Remember, regardless of whether you believe in a God, or you believe in no God, you are still believing in something. One cannot say with any more certainty that there is no God than there is a God. The case for proof of both sides can be found in books sitting side by side in Borders and Barnes and Noble, so throw 'em both out. So, believe what you want... literally! If belief in no God inspires you to be the best version of yourself you can be, inspires you to lift up your fellow humankind before yourself, comforts you when thinking about what happens when you die, and allows you to fall asleep at night comforted, then by all means, go for it! We are all believers in the end, because none of us have the capacity to know and understand the mysteries of this universe we live in. Of course, that's just what I believe! LOL.

Tonight, we rehearsed the music for tomorrow. I am very grateful for my fellow musicians who will be honoring Bella with their gifts. I shared with them tonight why I am especially appreciative of their contribution, and I want you to understand this. When we (musicians) perform music at an intense, highly emotional event, we have to take ourselves out of the moment and disconnect ourselves from the moment to an extent in order to "keep it together" enough to sing and play without losing it. This is easy to manage when we're not connected to the subject matter. However, Mark, Lisa, and Dayna have been 110% spiritually, physically, and emotionally invested and committed to Bella since we arrived here. They have been in the trenches with us the whole way, and are grieving the loss of Bella as well. So, tomorrow we will be in the moment during the rest of the service, but we will require ourselves to step out of the moment to honor Bella and my family with music performed to our best ability for all who are still in the moment. Now, we won't just turn into robots, but rest assured, we will be clamping down on our emotions while it is our turn to play. We can return to the collective moment as soon as the music stops, but it takes a lot of energy to plug the tub and "cork it" and uncork it minutes later. We will disconnect ourself from the community in that moment, but we will NOT disconnect ourselves from the music. We will therefore "meet you all in the music." Did that all make sense? I hope so.

Okay, now onto the details for tomorrow:

You have three options to participate in the memorial:

1) Live in person. Again, the memorial will be at 4pm Central Standard Time on the lawn of the Enchanted Garden at Como Conservatory in St. Paul, MN. If the weather stinks, we'll be in the Sunken Garden indoors.

2) Live over the internet. Here is the link for tomorrow's webcast:

3) Watch it later on youtube. Once it is up on youtube, I will post the link.

Thanks in advance to all who participate in making tomorrow one more moment of beauty along this absolutely amazing journey we are now all on together. Isn't it amazing to be a part of something that could simply wear the cloak of tragedy and despair, and instead wears the cape of beauty, inspiration, and hope? Folks, we are meaning-making-machines. We assign the meanings we give to all the events in our lives. Events don't have meanings, we do. Remember this. Otherwise, how could I have possibly sang to Bella with a sweet smile on my face at the moment of her death as we took her off her ventilator, and unplugged her umteen tubes from her? Because the meaning I gave that moment was that my daughter was transforming, not dying. Because the meaning I gave that moment was that my daughter was floating up to heaven, free from that heavy, sick body she was stuck in. Because the highest use of my gift of music is to be the soundtrack of a person's transformation from life to afterlife, and if that person is my own daughter, how much more special is that? How much more special could it be that my daughter heard her song sung to her at the moment of her birth AND death?

What things are you giving meaning to that disempower you? Try on a different meaning and see if you like how the new meaning fits. If it fits better, keep it! If not, toss it. We're making it all up anyway, so might as well make up the meaning that lifts you up, not drags you down. If I can give meaning to Bella's death in this manner, what meanings can you alter in your life? Chew on that, and really see what you can shift or transform that's been keeping you down. Good luck, and if something really cool happens from doing it, share it with the rest of us!

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

God night.


36 comments:

  1. Tim, sending you strength today.

    Your plans are beautiful and they are perfect to commemorate Bella's glowing personality. you'll be saying good-bye to her many days to come, until you find out she has gone nowhere, but is living in your heart.

    Thanks for letting us be a part of it through web-cast.

    Elena

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  2. It's so nice that Granma and Nanny are there with you, and all the nice people that you met in MN.
    Yes, the picture gave me the chills ...
    I hope that all what you wrote today (yesterday?)we'll have the same meaning to you during the memorial ... it will be so hard ...
    We will be with you tonight from England.
    Love,
    Mariana,UK

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  3. It fells so strange seeing little Bella's urn. I am not a great believer of God, but I do believe that's there so much of a person than a body can contain. Surely what Bella is does not fit in the urn. Bella is so much more, and the most important part of her will remain I don't where but she continues to exist; and for sure she will remain in our hearts and in the positive impact she made in our lives.

    Carla from Luxemburg

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  4. Again Thank You for being here for us!

    I so loved this! "I love that I CAN believe that a part of Bella can stay and watch over us from nearby while a part of her can go home to her family in heaven. I love that I CAN believe that I will be reunited with her when I die and that in that moment, all this "time" in between will seem like a snap of the finger. I love that I CAN believe that she came here to teach us all about strength, perseverance, love, commitment, priorities, and faith. I don't HAVE to believe any of that." SOOOOO TRUE!

    Love the urn and the wings - what a beautiful pair! Praying for all of you.

    Tina

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  5. Its all I can do to NOT get on a plane to be there.
    Today I hate my job as teacher because It will keep me from watching at 2:00. Booooooo!
    Lots of love from home.

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  6. Lots of prayers for strength and peace. Comfort in knowing Beautiful Bella now sits on the lap of God completly healed and happy while she waits until everyone can be united once again.

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  7. My heart skipped a beat when I saw the picture of the beautiful butterfly urn. It still seems so absolutely unreal to me - a complete stranger - that little Bella is not here physically anymore. I can only imagine what you are going through, and my heartfelt prayers and love go out to you. Thank you so much for setting up the webcast, I will be there tonight (I hope I figured it out right, it should be 11pm my time.)

    We had those same butterfly balloons for my daughter's 3rd birthday in May, and since my Lily loves them so much she got another one recently. I will get one more and we will release in memory of Bella.

    And when I shopped for Christmas presents today I came across a Willow Tree figurine (by Susan Lordi) called "Angel of Freedom". I don't know how to post a picture on here, but you can google it. I cried.

    Claudia from Germany

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  8. OMG!!! The urn with the butterfly wings is just beautiful. Today will be one hard day for you but just remember all the people that are there with you in heart and soul. Take care and know that one day you will all be together again. May the Lord bless and keep you. Hugs to you and your family.

    Anita Lee
    Jacksonville, Florida

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  9. Gma Alice in CaliforniaOctober 20, 2010 at 6:50 AM

    Dear Tim, Angelique and Ali: You will all be in my thoughts and prayers today as you celebrate the life of your beautiful and precious Bella. May our awesome Lord uphold you and bless you. Bella now has her wings just like the beautiful butterfly. Her urn was absolutely perfect. So glad you have the additional support of both Grandmas. Hugs to you all. Grandma Alice in California

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  10. I haven't commented for several days, but I want you to know that I've still been reading every day and thinking about and praying for your beautiful family. Thank you for sharing your lives with us, and for helping me understand more about myself and what I believe. I'll be thinking of Bella and you all today as you celebrate her life.

    Kim in NC

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  11. Hey, sweet family...

    I'm sure today's celebration will be as special and as poignant as all the posts you have shared with us along your journey. Praying for strength and peace for your family and all those who will be participating.

    With great affection,

    Susan
    A friend in NC

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  12. what a enchanting urn!!! i love the balloon story, bella will be watching over her sweet EB friends.

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  13. The urn against the butterfly wings absolutely stopped me in my tracks. What a beautiful butterfly it makes. I will be watching her memorial with a lot of tissues nearby. I hope you can feel the strength and love being sent to you by SO many people.

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  14. A couple of months ago my Grandma told me that at the end of the day, I should write down something that I was thankful for that day. Now, I didn't, but today my therapist gave me the same "homework". I'm thankful that the sun was shining this morning. I'm thankful for a great lunch with great people... just the stuff we take for granted. This may not be thankfulness, but as it rained on my way home, I simply stated that it's raining, and decided not to frown about it, because that will not make it stop raining. So instead I smiled, and watched other people frown. I'm sure my walk home was way better than theirs. Tonight, I will be thankful to be able and allowed to follow Bella's memorial. That will end up in my notepad in capital letters.

    God bless,
    Jennifer, Sweden.

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  15. Tim,

    Just to tell you I was reading your blog a moment ago when I leapt up and ran out on to the deck. You see, I'd heard the calling of geese, and I find their magnificent V formation and the slight adjustments they make as they fly past simply spectacular. They always give me time to pause and I always feel a bit emotional - they look so beautiful and so determined to follow the path they are born to pursue (as it were!).

    It is a truly spectacularly beautiful morning here. Seeing the birds for the first time this year as they pass over the house seemed like a little sign. They chose to set off on their journey south today. Not yesterday. Not tomorrow. But right on this very special day.

    As I looked skywards, I thought of Bella and I thought of you.

    Will be with you in spirit this afternoon.

    Fondly, as ever,
    Jane

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  16. Lifting you up on high today- may you feel the presence of our loving GOD- the closer we are to him, the closer to Bella we are too! May you hear the choir of angels singing in unison with you as you celebrate precious Bella's sweet life. I left extra early today for work, so that I will be 'attending' Bella's memorial via web- I have ordered balloons which will sit by my side and will be released later today in honor of Bella. I miss you little beauty- its an honor to have been in the presence of such an amazing soul. You're soul was created and meant to be here before time began....and in God's time, we will meet again, smile with each other and feel only joy!
    Ps...listening to the Fish as I write this, and 'Amazing Grace' just came on...its you Bella- I feel you!

    Xoxoxoxo,
    Nicole Baca

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  17. Despite living right here in the Twin Cities, I will not be able to make Bella's memorial service. I very badly wanted to, but I have to leave to go out of town this afternoon. I am so thankful that you will be putting this out on YouTube for all of us to see that aren't able to be there. My heart goes out to your family at this time. I remember reading your post last Tuesday morning and learning that Bella now had her wings. I must have read that post 2 dozen times that day because I was in such shock that this had happened. This little girl touched so many lives around the world. She put up a valiant fight and I know that you are very proud of her for all that she endured. She has been in my thoughts each and every day and will continue to be. Know that all of us that loved Bella, even though we did not know her, mourn your loss with you.

    Blessing to all of you.

    Amy in MN

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  18. Jack and Molly's NanaOctober 20, 2010 at 9:20 AM

    Wishing you well today at Bella's service, and hoping for beautiful skies. And, silly as it may sound, I just want you to be open for the little signs that she IS around you.
    I LOVE the urn you chose; it's soooo Bella, and the butterfly wings are a perfect backdrop. Thank you for finding a way to share the service with all of us; we ALL need a bit of closure, and I'm sure it will be perfect!
    Lots of love from Costa Mesa

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  19. Dear Ringgold Family: You are always in my thoughts, prayers and most of all in my heart. I will be watching on my computer with a giant box of tissues. Wishing I could be there to meet you guys in person.
    Thank you for letting me go on this journey with you to the end. Love you guys. Love and Peace. Leah's Nana

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  20. Hi Tim!

    Thank you for allowing us to share in your celebration of Bella today...it is a gift I will always treasure! Try not to worry too much about whether it's 'good enough"...you and Angi's love for her will shine through, and make the moments exactly as they should be :)

    I found myself writing to Bella this morning, and it turned into something I thought I should share. Its been a very long time since I wrote anything, so I guess it just needed to come out! It is dedicated to finding a cure for EB in YOUR lifetime...I hope you like it:

    Beautiful Baby Girl

    Whenever I spy a butterfly, I will think of beautiful baby girl Bella
    A precious girl with fragile skin, and the mighty heart of a lion

    An innocent baby whose life was too short, but whose spirit will live on forever
    In the hearts of those who loved her...we are everywhere...and we now(here)

    Who could believe that out of such pain, could be born such a strong faith?
    Who could believe that out of such loss, could be born an eternal hope?

    I was blessed, as we all were, to be brushed by her delicate wings,
    Never the same after that touch...inspired to do better things

    This isn't goodbye beautiful girl, we'll all see each other again
    In a world where a hug won't cause any pain

    And we'll all have butterfly wings


    I am forever grateful to you and Angi, who had the courage to share your beloved daughter with the world. And in return, the world loved her. Thank you, thank you, and blessings to you...always.
    Donna yazbek

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  21. Tim, Ang, and Alli
    I know, I keep spelling Alli's name wrong. Sorry. The final resting place for Bella's ashes is perfect. It's beautiful.
    I will be attending her memorial online, thank you again, for sharing her life. For such a little girl, she made a big impact on a lot of people. All these people, from all over the world, came together to love one little girl. The pain will become less as time goes on, but you will always have her in your heart. There has to be pain in order to grieve, and you have to grieve, in order for your heart to heal.
    Sounds strange, but that is how it works, as I'm sure, you know. Love and prayers from Portsmouth, Ohio

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  22. Leaving the Twin Cities to see MY family today...sad to be missing the memorial. You said it perfectly, though...it's not the events, it is the people that matter. Bella matters to me. I'll be watching the video as soon as it is available but most importantly, making sure I remember the lessons Bella taught me.

    Yesterday, my roommate (who heard Bella updates from me every day!) said "I miss Bella." I miss her too.

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  23. Dear Tim, Ang and Ali,

    You all continue to be in our thoughts and prayers. Thank you for sharing all your thoughts and feelings about this journey. May you all find peace, feel the love and joy and support from everyone who loves you all and miss Bella.

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  24. Tim, Ang, and Ali,

    I immediately began to cry as I opened your blog this morning and saw the beautiful picture of Bellas urn against the butterfly wings. Absolutely breathtaking. I began to cry harder when I saw the beautiful pictures Jen took of your balloon ceremony in the park. I warms my heart to see the love you share and have for Bella and eachother. What a strong family you are. I am uplifted in spirit and mind once again as I read your post. Enjoy celebrating Bellas beautiful life today. I will be watching from CA.

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

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  25. I love the idea of assigning a meaning and tossing it out if it doesnt fit!

    shakespeare said something similar in Hamlet- "...for there is nothing either good or
    bad, but thinking makes it so."

    Praying WITH your family,

    a reader who follows your journey and those of the other champion butterflies!

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  26. I am praying for you super-duper hard this afternoon. I know Bella's memorial is a celebration of your beautiful, courageous little one but that it will be a hard, emotional day.

    My husband is coming home early from work this afternoon so I can "attend" Bella's memorial on the web. I so wish I could be there. But my own little ones need me here.

    I will be sending lots or prayers and hugs your way this afternoon.

    Love Kelly in Tampa, FL

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  27. Wish you all the Best for today, here i will be praying for you all... Tim, You, Bella, Ang and Alli changed my life... i can not thank you enough...

    My best wishes for today.
    Sandra Coelho - Portugal

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  28. I'm so sad to say that I got the time-difference wrong by two hours, and no mater how much I want to, I can't stay up. So glad it'll be up on youtube, 'cause I don't want to miss it for the world, even though it won't be in real-time.

    (When you write 4pm, I automatically think 14.00. Which of course isn't right. Being a Swede, I'm just not used to the am/pm system, we almost only use the 24h-system)

    But my thoughts and my prayers are with you as I go to bed, and I hope that you and all of the other people there/watching are smiling through their tears. Bella's life was so rich, so beautiful, so amazing and blessed, and should be celebrated for what it was, not mourned for what it didn't become.

    Jennifer, Sweden

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  29. Thinking of you guys as you get ready to remember the beautiful life of miss B! I will watching live on the stream and hope you can feel everyones love and strength during the memorial.
    Love you three,
    The Booms

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  30. Praying that God moves His Spirit among and through you all who play apart in the service. And praying you and Angelique, and Ali find peace and closure--as much as is possible.

    Your eloquent words on faith, and celebrating beauty in the midst of life circumstances is teaching me so much. May you be filled up, renewed, inspired, and strengthened to continue the incredible journey God has given you all.

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  31. The urn is beautiful, especially with Bella's wings behind it. I plan on watching the video as soon as it's posted, I know it will be an amazingly beautiful service. One fit for an amazing little girl who has taught the world, myself included, so much about life.

    Jess
    Chicago, IL

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  32. Beautiful Service!! It honored Jesus so much and was a tribute to Bella!! Blessings on your family in the weeks ahead!!

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  33. We couldn't be there "live," but our hearts were with you all today, as you honor Bella's transformation. Continue to be blown away by all her beautiful spirit continues to create in the world.

    Today, I gave up all my meaning around a little boy in Ben's class who was moving from one tantrum to another. As soon as I did, he walked up, grabbed my hand and did not let go for the rest of the morning. He handled transitions well after that, and was calm. Later, the teacher told me he is a special needs child, and today was his second day of pre-school. Pretty cool. Thanks, Bella.

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  34. Just watched Bella's memorial. So beautiful! Thank you so much for sharing such a special day--and a special little girl--with the world. Many prayers still coming your way...

    Tracey in Tennessee

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  35. The photos of the balloon release are beautiful. Crying here at my desk again! God bless your family. I pray that the memorial will be all that you dream it to be.

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  36. Tim, your words are so inspirational. I find your ideas about belief to be so beautiful and so logical at the same time. We all have the ability to choose our attitudes and choose our beliefs, so why not choose something that lifts us up and helps us make the world a better place? Despite all the sad times your family is going through, I find your blog to be a beacon of hope and love, and that is an incredible thing. Thank you for that.
    Lydia
    Tucson, AZ

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