First off, sorry again for the late post for those waiting to read before going to bed. It has taken me HOURS to read all of your amazing letters, emails, comments, texts, wall posts on facebook, etc. Hours... Also, now that Ali is (mostly) asleep, Angelique and I have finally gotten some private time to just talk, and there is no better, faster access to intimacy and partnership than through communication. So, sorry you had to wait, but we had an opportunity tonight and inside that opportunity we distinguished some pretty awesome stuff about Bella, about Ali, about each other, and about ourselves. Goooood stuff.
First off, I just want to say that if you think words are inadequate to describe your feelings, sorrow, and thanks, you can appreciate how inadequate I find words when attempting to describe our thanks to all of you for your deeply personal, heart-felt messages.
What an amazing dialogue this has become, in word and in deed.
Well, we didn't sleep much last night. Though our bodies were exhausted, our minds were racing and took our bodies hostage. I hate when that happens! It's a good thing the RMH has blast-proof, metal, block-out-all-life-giving-light window shades. I set them to "Cave Mode" before we all crashed somewhere after 1:30 this morning, because I knew sunlight would be upon us before we knew it, and it would be our enemy. Ali asked if she could actually fall asleep on my back. That was a first. The funniest part was that she actually did! Within about 2 minutes easily of climbing aboard, she was O-U-T. Hilarious. See picture and laugh.
We eventually got out of bed this morning, though not without GREAT effort. If I had a catheter and an IV, I would have summoned my laptop and cell phone and just read and typed from bed in the pitch dark all day. There just seemed to be no spine in my back to get me out of that bed. If I haven't already shared this, I am a HUGE drama queen about getting up in the morning. It's a bit ridiculous. You'd think by 38, I'd have figured out the morning follows night... every day. Nope, it comes as an uninvited guest - an affront to the very rest I hold so dear.
The ONLY thing that has gotten me out of bed day after day here... Bella.
My first thought was, "I have no reason to get out of bed today." It had just become my life, my purpose for operating each day. Now, I had no mission.
My next immediate thought was, "I still have 2 amazing ladies in my life. Time to focus all that energy on them. GET UP."
In the grief workshop my mom, a dear friend and colleague Mauro, and I lead, my mom talks about the elements of grief. In it, she talks about "Cognitive Disturbance." When we are grieving the loss of a loved one, we are operating on 1/2 to 1/4 our normal brain capacity. Perfect example: I walked to the car in my pajamas this morning only to get there and realize I didn't bring the keys. On the way back in, I forgot to buzz myself back in and couldn't figure out why the inner door wouldn't open. No big deal, but I have never done that once in the several hundred times I've gone in and out the RMH doors. Last night, when driving the car back from the hospital, even though it was only 2 blocks, I could tell that I really shouldn't be driving right now. I'm just not firing on all cylinders, playing with a full deck, etc...
The morning and early afternoon were filled with cartoons and playing with Ali, mixed in with a few phone calls and quick attempts to read comments coming in from all over the world. I had over 500 emails in my inbox this evening (the blog sends an email every time someone posts a comment. Should have suspended that feature... I spend a chunk of time every day combing the inbox for emails that aren't from the blog that I might miss... so if you are emailing me at my gmail account, I may or may not ever see your email.)
One of Bella's primary nurses, Renee, came by before her shift today with some gifts, flowers, and c-o-o-k-i-e-s... not sure which one we appreciated the most! LOL. She gave us this crazy cool head massager that looks like a kitchen utensil, but feels GREAT. Nice stress reducer. Ali just LOVES Renee, so it was great to see Ali so happy.
Then, we hit our favorite Punch Pizza for lunch and then walked to the barber shop for Angelique and Ali to get trims while I refueled at Starbucks, all within walking distance from RMH. Love how little we use our car here. I am reallllllllllllllllllly going to miss that.
After, it was more phone calls, reading, playing, until our friends Dayna and her husband Brent stopped by to visit, bring gifts, and eventually take us out to dinner. It was really great spending time with them; we were feeling a little stir crazy in this little apartment and didn't want to eat downstairs in the dining room with the other families just yet.
It is now 3:30 am and Angelique and I still can't sleep a wink.
I wanted to say so much more tonight, but I am so cognitively fried, it might not all get through to my fingers. It feels like there is an electric fence around my brain, and any thoughts that try to get past it are being fried on the spot. A few slip through, but not unscathed. There is also a feeling of weight on my brow. It's similar to the feelings I had just after Bella was born. It's like someone is pushing a cinder block down my forehead, but it is different than a classic head ache, it is just this intense, downward pressure. So, it doesn't feel too good upstairs right now.
A lot of pain.
However, in my heart, there is a far different phenomenon occurring. In some moments, there is an aching sort of throbbing, but not pain, but for the most part throughout the day, my heart has felt very peaceful. I can feel all the energy holding us in our own healing cocoon right now. Even though we are holed up at an RMH thousands of miles from any family, I feel in my heart the same comfort as when I had family all around me when my dad died, for example. I never thought that love could be transmitted across so many miles from so many strangers, and produce the same quality experience. It is quite a unique experience.
One experience I want to tell you about was when I dropped to my knees last night before bed to say my prayers. Out of my heart immediately flowed a gratitude list! I started off immediately with, "God, THANK YOU for such an EXTRA-ORDINARY experience today. I began thanking God for all of the magical moments from the day...
For having Ang off work and Ali out of school on the day Bella was being called home.
For prepping me with the prior life experience and intuition to know Bella was essentially dying when I walked in the room and calling momma to change her plans. IF that phone call hadn't been made, she wouldn't have made it in time when Bella coded.
For Bella waiting for me to be by her side before leaving.
For her birth song beginning on the iPod "coincidentally" THE MOMENT her heart stopped beating (the second and final time).
For being able to hold her for so long at long last.
For being able to remove all her tubes, lines, bandages, dressings and return her to her pre-transplant self.
For being able to bathe her and dress her for the first time in months, and watch Ali gently bathing her sister.
For getting to say EVERYTHING to Bella and realize in our hearts that there were NO REGRETS.
For the child life staff for capturing the moment in two beautiful rituals.
For getting to tuck Bella in, dim the lights, turn on her lullabies, and say, "God night," like we always did.
For getting to get everything out of the hospital last night.
For being Bella's parents.
During my prayer, I felt incredulous at the fact that all this gratitude was pouring out of my heart the night my daughter died.
That is the moment I began to really take ownership in my own growth, development, and transformation in this journey. These feelings of gratitude were authentic, they were natural, it was real. In my own journey, I realized I had so much to thank Bella for. We have been so honored by all of you for sharing so generously what our daughter has taught you. Well, I have learned from and been increased by Bella as well, and Angelique will tell you the same thing.
By Bella coming to us with EB, she gave us two very important opportunities for our own spiritual life journeys. It's as if each one of us had a lesson to learn from Bella before her work was done, and we both feel like we learned our individual lessons. That is a good feeling, and helps turn the page on this chapter of life. However, this is not a textbook, where the next chapter may have nothing to do with the previous one. This, my dear friends around the world is a story. A story of strength and what the gift of faith makes available.
I have written about faith before, and I will continue to do so, because I want to continue to break down the pre-existing meaning people box faith into. For me, faith is a gift that you give your self. No one can give it to you, and no one can take it away. It is from you, for you, by you. What you have faith in does not even matter. I think THAT is the biggest pitfall people fall into when discussing faith. It is not the "what" that is decisive, it is that there IS a what. The what doesn't matter, the result the what produces does. In other words, to me it doesn't matter what you believe in, so long as it works for you to inspire you and empower you to be the best possible version of your self. That rubs some people the wrong way, and I'm okay with that, I don't profess to know "the truth," just what works for me.
Have you heard this one? "What's the best diet out there?" "The one you stick to."
How about this one? "What's the best time management system/device/product?" "The one you use."
I have a very pragmatic approach to faith. Use it. Find a way that it works for you to have it, then go use it.
Oaky, my brain just officially switched off.