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...
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."