October 21: The Day After

Heaveno!

Well, in many ways, today represented the first day of the rest of our lives.

It is the day after Bella's memorial. Yesterday was the end of time as I knew it. In other words, when Bella died, I knew we would have a memorial here for her, and after that, I just didn't know what we'd do. It was the last day in my internal calendar. Now I would have to wrestle with the next step; going home. Ugh. The worst. I don't want to leave here. Yesterday at the reception Bella's nurses threw for us all after the memorial, each time someone said goodbye, it was this sad, awkward moment that would go something like, "When are you guys heading out?" and we'd say, "Well definitely not till after Sunday." Then they'd say, "Oh good, we'll do something together between now and then." No one wanted to say goodbye. Not us, not them. We'd all lost Bella, now we're going to lose each other. Now, of course it isn't in the same way, but when you move, you grieve the loss of that physical contact and proximity you grow to love, cherish, and count on. What a unique journey this really is for us.

Moving on...

Let me break down yesterday and today in my normal fashion. Last night, I felt bad for not being able to detail the day. I was just too wiped out, and blogger was doing an update that prevented me from posting any pictures from the day. At least the memorial was still up on ustream so at least everyone had that to tide them over! LOL. The challenge of blogging daily is to balance that there is any significance to me blogging daily with the knowledge that there are many, many people who start their day with this blog. I feel a responsibility to you all who have sent us so much in the way of love, wishes, prayers, intentions, thoughts, cards, socks, butterflies, etc. It is a wonderful circle of giving; you give to us, we give to you, you give back to us, we give back to you. Wouldn't it be great if all our relationships had the tension of wanting to do more and more with every chance you have instead of waiting for that other entity to finally shape up and... whatever.

Friends, are you creating your relationships, or reacting to them?

So, back to the summaries.

Yesterday was just magical. I was so proud of all the work everyone did to make the moment the way it turned out. It exceeded my hopes and expectations. There are so many people to thank for the way it all went yesterday, and I am happy to say that I was able to thank each and every person involved yesterday. From our local friends here, to Bella's nurses and respiratory therapists, to our local EB families and biological families, the team that worked to make yesterday so special was HUGE. There was such a sense of family throughout all the interactions yesterday, it was a dream come true.

I was most proud of my beautiful wife Angelique, who delivered the most powerful, love-filled, and respect-inspiring eulogy I have ever witnessed, bar NONE. Being the mother of the child who died, it would be easy to understand if she wanted nothing more than to just get through the whole ordeal sitting in the front row without breaking into a million pieces. However, that's just not Angelique. I have always known in my heart that she is the stronger one out of the two of us, and that her being and presence has required me to upgrade my own level of playing the game of life just to keep up. The difference between us is that I wear EVERYTHING on my sleeve, which in social and public circles doesn't give her a lot of room to express her self. She's alright with that; she doesn't have the innate desire to be in the spotlight and in front of the masses like I do. She is content to be supporting from the side; but if you get the chance to encounter her in life in any capacity head on, you find yourself in the presence of one powerful, but very understated woman. She takes her work, whatever it may be, very seriously, but herself lightly.

Folks, that is the key to life.

Can I just continue to gush a bit more? Angelique is like teflon; other people's drama just doesn't stick on her. She doesn't get sucked into any games anyone plays. She doesn't have time for you if you are going to play games or be dramatic. No time. Again, what makes her so amazing is that she doesn't carry any "better than you" attitude towards the drama queens out there, she just moves past them and onto the things she is committed to, like supporting her family, being the best mom she can be, and being supportive of her husband, whatever his dreams may be. I have a lot of dreams, so that last piece might be the toughest test of them all!

Anyhow, as I sat on the bench trying to keep Ali occupied, I just watched Ang's posture as she delivered her thoughts and feeling on being Bella's mom. ROCK SOLID. That's who she is, and how she is. ROCK SOLID. There is a saying that fits her:

How you do anything is how you do everything.

Said another way, there is only one you. To think you are one way in one scenario, and another way in another, is simply fiction. True integrity comes from understanding that every fight you've ever been in, you were there. Every good grade you got, you were there. Every heart you broke, you were there. Every lie you told yourself, you were there. Who is the only person that has been in every relationship you've been in? You. You. You.

Angelique not only understands this distinction, she lives it, and has lived it since the day I met her way back in... what year was that, honey? :P

She is the most reliable person you will ever meet, because she never veers from 100% accountability in anything she does. You will never hear her say, "Yeah, I was supposed to do _____ with X, but I just didn't feel like it so I didn't." Her word is ROCK SOLID. Her integrity is ROCK SOLID. Her confidence is ROCK SOLID, and without an OUNCE of arrogance. It is mastery in action, and I have continually improved as a human being just to try to keep up with how much she ROCKS IT.

I love you, honey. You were amazing yesterday.

At the end of the day yesterday, I felt proud that we are Bella's parents. I feel like we were equal to every task set before us to be the best stewards and caretakers we could be. (non sequitor - what's the difference between a caretaker and a caregiver?) Seriously, though. What I was left with at the end of the memorial was that we left no stone unturned with Bella's care. When Ang was pregnant, we listened to the same program of music every night while I massaged her. I played Bella's song to her belly every night. Once born, we answered the call to be willing to do whatever it took to care for Bella. In choosing to do BMT, we thought we were doing what would give her the best chance at having a somewhat normal and full life. When things turned south, we stood up to every doctor and expert and managed her care at a level that made every healthcare professional who treated her bring their A game into Bella's room every time they walked in, otherwise, they were shown the door. Even in her death, we sang to her, held her, bathed her, restored her to her natural state, free from tubes and bandages. Through her blog and memorial, we sought to continue to display that same level of conscious commitment to Bella, to let her know that her decision to pick us as her parents was right on.

When we got home last night, I realized that we didn't let her down. We can say in full integrity that we couldn't have done better for Bella, and at the end of the day, regardless of how old or successful your kids ever live to be, that's what you want to go to bed feeling in your heart. Ultimately, they are on their own journeys, and you cannot control their outcome, but you can give your best, and if you do that, you can fall asleep knowing you did your part.

All of the above pictures were taken by Erin Spector.

I can fall asleep knowing I did my part in Bella's "extra-ordinary" life. Caring for Bella gave me the experience that I can answer the call to do far more than I thought I was capable of. I have a confidence in myself that I did not have when I arrived here. I am forever changed by this experience, and will never be the same. I am so grateful for that. Bella's gifts extended out to so many, and I am blessed to be included in the list of those who have learned from Bella.

Bella.

Wow.

You.

Are.

Amazing.

Okay, onto today. Today, we had a wonderful picnic with the Pops and Edlings (Elle's and Daylon's families) at Hidden Falls in St. Paul. It was beautiful, though just a touch nippy. That's okay. We had a BLAST. Thanks to the Edlings for throwing the whole thing for us! We ate lots of good, love-filled, homemade food, had epic rock-skipping sessions on the banks of the Mississippi River, watched Bald Eagles fly overhead, even had a drum circle! It was wonderful. All three families are in deep here. We lost Bella. The Pops had the "DNR conversation" with their docs today as baby Elle is fighting for her life right now, and a fungal infection in her blood is now out of control. The Edlings will be here till who knows when as Daylon is basically a newborn in many developmental areas after bleeding in his brain while on that experimental drug defibrotide they gave him to save him from V.O.D.

Please say a prayer/ send your highest thoughts, wishes, and intentions to both families, but especially to baby Elle and her family right now. Please drop by her blog to send them some love they can feel. Write Elle a note!

Tomorrow, both Nanny and Grandma head home. We don't have the words to express how grateful we are to both of them for their tireless work these past 8 days. I don't even know how many boxes they have shipped for us... probably around FIFTEEN or so. GOD LOVE THEM.

We are not left alone, though. My fabulous sister Tracy flew in all the way from Madrid, Spain to lend her support and be here for family in any way possible. I picked her up from the airport last night, and have been in stitches pretty much since. Our other sister Mary was alway known as the best storyteller in the family, but she clearly has some competition now. Tracy is HILARIOUS, and brings with her all kinds of stories from life in Europe. Ali is TOTALLY smitten, and since Tracy has two sons, she is loving having some girly time of her own. She'll be here till Sunday, and I know we are going to have a blast these next few days together! She leaves Sunday, and then what about us?

We'll head home.

We just don't know exactly how or when we'll get there yet. ;)

Isn't it amazing that on that one day, Bella did say, "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it went away,"? Amazing.

God night.

P.S. Next week is EB Awareness Week. Start thinking about creative ways to spread awareness, and start thinking about how much money YOU want to raise for PUCK next week. Hint, you can raise more than you think, because You are far more powerful than YOU think. How do I know this? Because YOU (the person reading this right now) think of Ang and me more powerful than we think of ourselves. So guess what?

Right.

Back.

Atcha!