September 26: Day +86

Heaveno!

Oh the days just roll on by. I just looked up at the date and can't believe we originally were supposed to be packing up the minivan and heading home in 2 weeks. Wow, what a different reality that is from this one. I thought THAT road was gonna be difficult, and I was worried if I would be able to handle THAT. When I say THAT, I mean the 30-60 days we would have been on the BMT unit followed by the 70-40 days hanging out in the RMH.

I am so grateful to God. He clearly knows me better than I know myself.

He knew I was up to THIS task (84 straight days in the ICU and counting), when I thought I wasn't even up to THAT aforementioned task. If you had told me before this had all started that on September 26, we'd still be in the ICU and in spite of that I would be healthy and vibrant and focused and FIRED UP with a world wide network of prayer warriors literally praying around the clock and around the globe for Bella, I wouldn't have believed it.

He's told me this before. He has said to me that If he told me the heights he is going to lift me in my life, I wouldn't believe him. He's told me before that he's NOT going to give away the ending, because I wouldn't believe it was "possible." All he asks of me is to trust him.

He says to me, "I gotcha."

I have found myself saying that to Bella throughout her short life whenever she needs consoling. I find myself saying, "I gotcha... daddy's gotcha."

What a great image of God as a daddy, holding me, rocking me, whispering to me, "I gotcha... daddy's gotcha."

How do I know he's got me? Well, we prayed. He answered.

NO CLOT and NO SURGERY TODAY.

WE DID IT! and when I say WE, I mean you, me, God, the Universe, the all that is everything. WE, in communion, saw and visualized an outcome for today and it came to pass. God be praised! Yesterday, when I prayed that Friday was not a fluke and walked in to see the monitor look as it did (when I took that picture), I found myself saying, "God be praised," out loud. Now, that is not a saying I normally say, but I have found it to be on my lips and in my heart A LOT over these past 4 days.

For those of you that do not believe in God or a god, I want to continue this conversation in a way that does not alienate you. I want you to think of whatever force, entity, power greater than your self that works for you. It could be the universe, pure energy, the force, nature, the unified field, this online body. What I want to say is that for the past 4 days, something has uplifted me, like literally lifted me up (okay not literally - that would be levitation, right? That definitely did not happen) and held on to me, wrapping me in... hope and safety. I have felt impervious to doubt, fear, skepticism, anxiety - as if I was sprayed with teflon - and though it has been around me, it has not stuck to me. I have simply formed a bubble around Bella and I have sat/stood inside with only Angelique inside with me. It has been like a protective shield or force field.

As I do my best to describe the experience I have been having, what I chalk it up to is the upgrade in the power level of intention, energy, thoughts, and prayers being offered up to Bella and our family, combined with a willingness to give up on the medical establishment in order to make room for a miracle. It has been a simultaneous motion of your pushing the door harder from the outside and me opening it up from the inside. I have been giving all my power to Bella's myriad machines and medicines, thinking that if we just found the right dose/amount, THEY would save her. Don't misunderstand me on this... especially anonymous defensive medical professionals... you know who you are... (Try not to "Take" offense, although I guess it is yours to take after all, not mine) The point is that by giving all my power / putting all my stock in medicine, I left out room for any other power. Even the most evidence based scientist knows that there are children that heal all day, every day, from things "the experts" say are impossible to recover from. Early on, although I would read your comments that said you were praying, I just didn't fully take them to heart. However, when the docs kind of held up their hands like "I give up" this week, I could no longer look to them for answers. They admitted themselves that they were out of them, and they admitted they were worried, even scared. So, I came back to you, pleading for your help.

I turned to you, because I honestly was afraid to turn to God.

I needed your fire to help me reignite mine.

When I looked in the mirror and said that God could fix this whole issue in a heart beat, I believed that to be true. What I feared was that while he could, he wouldn't. I mean, if two football teams are praying to God before the big bowl game to win, and only one does, did he ignore the other even though they prayed? That may seem trite or juvenile, but I was afraid to get my hopes up. Not only that, I was afraid he'd let you down, too.

See, when Angelique was pregnant with Bella, I prayed on my knees almost every night offering a prayer of thanks for a healthy baby growing in her belly. I was so confused when Bella was born with EB. "What did I do wrong?" I thought to myself, regarding prayer. I figured I just didn't pray hard enough or often enough... or the "right" prayer, whatever THAT was. I must not have done it right. So, ever since then, I've been afraid to jump in with ALL my faith and hope. I've kept one foot in man's world trying to control things here on the ground. I have written about this many times before... my attempt to control the outcome, and how poorly it's turned out.

On Thursday, I surrendered. I mean I REALLY surrendered. Like a trust fall. Once I leaned back, I felt myself being caught. Since then, I've felt no need for the docs; like they don't have the key to Bella making it. The key lies outside of her room, outside of Unit 5C, of a children's floor, at a teaching hospital, in the midwest, of the United States.

This is not to say that I think we can just walk home with Bella tomorrow. No, that would be silly. The point is, we reached a point in Bella's care where we weren't even maintaining, or buying time, as one ICU doc explained his job to be. We were losing. Losing Bella. We were no longer just keeping her afloat. She was sinking, and the docs didn't know what else to try, so they didn't do anything for 2 days. Bella just floated, down, down, down. I watched in anguish as her blood pressure dropped, and dropped and dropped.

AND I - NOT YOU, OR ANYBODY ELSE - WAS THERE WHEN THE DOCTOR LOOKED AT ME, THEN MY CHILD, AND SHOOK HIS HEAD SIDE TO SIDE AS IF TO SAY, "NOPE, NOT THIS ONE, SHE'S NOT GONNA MAKE IT."

It was then that I started to turn my power, the docs' power, the machines' power, the medicines' power over to the collective energy of what I call God, and to you, Bella's online family. When I started reading to her your comments, I realized you believed more than I did! YOU brought me back from the abyss! In my darkest moment, you were the light I followed out.

(P.S. my computer battery strength read 20% 10 minutes ago. I just looked up, and it now reads 44%. I think God wanted me to go off on this tangent! LOL)

Bella getting to "lay up" a little - I don't think I can quite call it "sitting up" just yet, but it's a start!

So, having said all of that, let me tell you that when I walked in this morning, Bella's dialysis line STILL wasn't working, and she had a fever of 102.8. She had a clot in both her left and right internal jugular veins, her left subclavian vein was still collapsed, and she still had a blood clot in her liver. I stood in the circle as the fear and 'crushed' feeling bounced around the circle from person to person. When they read off how many clots Bella had, I felt my grip starting to slip. I felt the slightest sensation of dizziness, and fear. Why? I tried to understand why she had all these clots, and for a moment, I believed the group that it was serious.

It was an awful feeling, so I stopped feeling it.

I realized in that moment that I feel things, they don't feel me.

Circumstances and situations don't have feelings. We do. We place feelings ON TOP OF situations and circumstances. How can I say this? C'mon, ever known two people that do the same job, but extract different levels of joy and satisfaction from it? Why? It's the same job after all? Because THEY, not their job decide - CHOOSE - how they feel about it.

This morning, it was as if I had quit drinking, then had a sip and remembered how awful it made me feel, so I didn't have another sip. I chose not to drink any more of the dizziness or fear.

I began to get ready to go to surgery by hitting the men's room, and when I returned, I donned Bella's pink swim suit head gear to lighten the mood. Call me Patch Adams, but being silly on a peds unit and making people smile and laugh - even if it's at me - is a useful thing! Luckily, I had taken off the hat when the surgeons entered the room. The surgeon looked at Bella's shoulder, and explained that the catheter had moved quite a bit since it was placed due to her posture, getting tugged on, and the amount of fluid she has put on. So, he positioned a little ball of wash cloths under her right scapula (under her sheet - mind you) and pulled back on the syringe, and just like that, the line worked!

I put on my "rally cap" to raise spirits on the unit after rounds, before the surgeons arrived.

We went back on the circuit, continued to roll down the amount of pressers Bella's on, and began PULLING FLUID OFF BELLA TODAY.

All day, I read your comments to Bella - especially when we were going back on the circuit. I just sat with my back to the small army of docs in the room and ignored them and the monitor and the machines and just concentrated on using my voice to recreate your words in the most loving and intimate way I could - as if YOU were there actually saying them yourselves. It was just your words, my voice, and Bella. I do not know how many people ended up in the room at the busiest point; there were SO MANY COMMENTS to read that I must kept going, and going, and going, and ended up in a bit of a trance myself.

In the bubble... didn't know this picture was taken till I uploaded them all to my mac!

Funny part of the story - our new resident Maggie (who is totally and completely AWESOME) told me later in the day that I was reading the comments "don't let those docs" this, and "those docs don't know that," and the room was FULL OF DOCS! LOL. We actually had a good laugh about it.

YOUR wall... begun!

Oh, and your comments look SO BEAUTIFUL all over Bella's wall! More are being made as we speak. My poor friends Dayna and Amanda have their work cut out for them! Dayna came up with an AWESOME idea! Please download and print off the butterfly picture below and have your kids (or anyone for that matter - but especially kids) who know Bella to write/draw/color a note for her that we can hang in her room as well! We know there is a whole army of children worldwide who have come to know and love Bella through their parent's story telling and the pictures online. We want their voices to be heard as well! When they are done, mail them to me at 621 Oak St. SE Minneapolis, MN 55414. Make sure to write on them who they're from and where you live. Thanks again, Dayna, for such a great idea!

Dayna's sister-in-law, Amanda dropping by with your cards!

Many thanks to you for your love and support. You have saved me. You have saved our Bella!

God night.

P.S. For those who live outside the U.S., I apologize, Bella's book is not for sale, but you can download it for free on the lulu.com sales page as a .pdf! I set it up that way myself, so please feel free! Get it? Feel free? Oh man, I better quit now...

Check out the photo on the computer... Creature of habit?