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.
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 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...
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?
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."