October 15: A New Day +4

Heaveno!

Well, what a difference having Nanny and Grandma on the scene! Man, they are gooood. It has been a joy having them around. There is much more joy in the house, and we needed an infusion of that, mostly to keep up with Ali! Ali needs near constant stimulation, and between making arrangements, keeping up with correspondences, and just plain grieving, it's been more challenging than usual (ya think?). Having 4 adults to keep Ali occupied and having fun is a lot easier than two! Reinforcements are good!

A lot of cleaning and packing got done today. We also finalized Bella's cremation process, and locked in with Como Conservatory for next week. We're shooting for Thursday at 4, but we are still waiting on hearing back from our hospital chaplain to see what her availability is. We are also in the process of putting the elements of the memorial together; music, readings, yougoogooley (you HAVE to watch Zoolander for that one), etc.

After a fairly productive day, we went out to Loring Pasta Bar in Dinkytown, one of my favorite places here. It is an old drug store that the owner gutted and completely created from scratch into a restaurant that looks like it is out of a Tim Burton movie. It is AWESOME. It was fun to get out and Ali was a rockstar! She is quite the little adult right now. Too cute. We actually had 2 courses! That's a big deal as all you with little kids know! I think Ang's droid with Elmo on it helped it all transpire rather smoothly. We even indulged in a bottle of wine! I honestly can't remember I ordered a bottle of wine at dinner. Probably in February when we were treated to an amazing trip by Molnlycke Healthcare for Bella being their patient of the year. Molnlycke makes just about all of the dressings we used on Bella. They are some of the most state-of-the-art wound care dressings out there, and they are a huge supporter of DebRA, and have repeatedly gone above and beyond the call of duty to help us with anything they can.

Incidentally, the other day I received a voice mail from the president of Molnlycke USA offering his most sincere condolences. He gave me his cell and told me to call with any needs we might have. He even pointed me in the direction of a retired 3M exec who lives here in the twin cities for on the ground support. Friends, that is a class act right there.

I also received a very nice call from Dr. Tolar today following up on the autopsy results. The lab reports aren't in yet, but on visual exam, he didn't see anything unknown with her liver and heart, her two biggest problem organs at the end. It will take 3-4 weeks to get the final microscopic detailed report. Dr. Tolar shared some really nice sentiments with how we conducted ourselves through the process, and I reciprocated, stating the same thing. I told him that I plan on working to help P.U.C.K find a cure for EB in my lifetime, and he paid me the nicest comment. He said, "Tim, you think well, and you speak well. I think working with Lonni and Jay will be most beneficial, and I certainly look forward to being your partner in that endeavor." Good stuff.

Angelique is doing an amazing job of keeping a steady pace through everything. She has more of a jogger pace, while I tend to sprint, crash, sprint, crash. Still, though the sadness permeates, she is as strong as ever. I am in awe of my wife. She makes me stronger than I'd be on my own. Just like Bella did. I am blessed to be around such high calibre women.

Ali is handling things pretty well, we think. I mean, we don't know too many other kids her age who have lost their little sibling, but given that, she seems to be doing really well. She colors and draws a lot, wants to play ALL the time (and why wouldn't she?), and occasionally responds with extremely appropriate comments about Bella. She wrote her friend a card that said, "I know Bella died I am sorry." The best of all though is the following note she wrote in Bella's guestbook. She asked mommy to spell for her each word, so mommy would spell each word one letter at a time, and Ali would write it...

The interesting thing is that Ali doesn't want to talk or listen directly about Bella. It works for her to express herself artistically or creatively, or to be more conversational, more roundabout, about Bella. What I mean about the second part of that statement is that if anything related to Bella comes up in conversation, she can hang with it and is in fact very funny, insightful, and appropriate in her interactions. However, if you try to ask her how she is, or a specific question about Bella, she very quickly says, "I don't want to talk about that." You know what? NO PROBLEM. As long as she continues to express her feelings, we don't care which avenue she chooses to do so with.

Bella's (sort of) hand print in the center... Ali did the rest...

Bella's pink feet, Ali's pink hands, mommy's red hand, and daddy's blue hand... we did these at the same time as the life molds.

Okay, that concludes the news of the day, into the deep end we go!

Someone asked us last night, "I am curious if you wish you had not done the BMT?"

Given all the information we had at the time, of course we would have! I wish Bella didn't die, but I also wish Bella never had EB, neither of which I have any control over. When mommy and I were with Bella after we bathed and dressed her, it was just the three of us. We were leaning on the bed, both caressing and holding her. We said we could feel guilty if we wanted to, but that we wouldn't because we did every thing we knew to do with the best information available at the time. If we were looking to do BMT now, and we were another family with an infant who just watched what happened to Bella, Daylon, and Elle, I think I'd say we might wait a little. However, all you have to do is go back to December of '09 when we were contemplating BMT to see that 4 EB kids died in one month alone for various reasons around the country, and that death comes to EB kids at any time, for any reason. Any of those kids could have been Bella. We could have lost her the night she was born when she coded. We could have lost her when she spent a week with a fever and infection in the hospital in the end of September.

One of the most important pieces of the study right now is that it at least gives parents hope. We were so lucky to give birth to Bella after the report of patient 1 was reported on in the press. Bella was born into hope. Prior to 2008, every child ever born into the world that had EB was born into a world of no hope for a cure. The psychological power of hope is immense, and we were not content with beginning palliative care for our daughter from day one until whatever day she finally succumbed to EB. If there was a chance - even a long shot - to save our kid from a fatal disease, do we take it? If our participation not only provides a chance at saving our child, but anyone who comes along after with the same disease, we thought, "How could we not?"

One of the things about being in this study is that regardless of whether Bella made it through or not, her case will improve the lives of kids behind her. It already has. Elle's care is informed by what happened to Bella, just like Bella's care was informed by what happened to Daylon. The ICU team at the U had very little experience with the EB patients for the first two years of the study. Now, since the end of June there have had between 1 to 2 EB patients around the clock there. That unit is learning the ins and outs of EB so that the outcomes of EB kids on the unit will no doubt improve from these early cases.

I will also say that what I wish really isn't any more relevant than wishing I hadn't crashed two of my parent's cars in high school. I am very pragmatic about feelings. First off, for 90% of the feelings you have during a typical day, you are at choice as to choose them, or choose otherwise. If a feeling doesn't serve what you are trying to accomplish, don't have it! In this case, wishing we hadn't done BMT doesn't serve my grief at all. It leaves me disempowered. It leaves me questioning my choices. One thing people who haven't gone through BMT with a child who isn't old enough to say for themselves need to realize is when you sign the consent form to poison your kid to within an inch of death, then try to bring them back unharmed... you better be blessedly sure you're making the right decision, and that there is no other alternative out there! The feelings that you did this to them, not nature, can reallllllly mess with you. It is an underlying weight that can whittle down your patience, trust (if you second guess yourself, how can you trust anyone else?) and tolerance for any mistakes. It takes some real mental exercise to keep that out of your dominating thoughts. It may creep in from time to time, and it certainly did for me, but I chose to let it go; it just made me feel worse than choosing to feel cared for, held, and comforted. So, I let it go as often as I had to in order to stay present and committed.

One more thing about faith I want to share tonight. I was really nervous that if Bella died, God would have made us all look the fool for praying sooooo hard for something that never came to pass. I thought, "Tim, you are really going 'all in' on this faith thing that Bella's gonna pull through. What if she doesn't? How are you going to explain that to your blog readers, huh?"

Good question, especially because Bella in fact did not get better, she died.

Well, if by praying and turning the intense fear and anxiety in me over to God, I am freed up to be connected, present, and in action for myself and my family, isn't that better for all of us regardless of the outcome? What if by being so freed up and in action, it actually influences the outcome? Let's say for argument sake that there are three types of endings to any situation:

1) goes your way

2) goes against you

3) could go either way (on the fence)

Let's say numbers 1 and 2 go the way they go regardless of your investment into them. But what about number 3? What if by having the courage (strength and action in the face of fear) to have faith that things will be handled by a power greater than you if you do everything you can on the ground, it swings number 3 into your favor? What if by being cynical and resigned, or an attacking control freak, you tip number 3 away from you?

Having faith might end you up with 66% of the decisions, while not might only net you 33%.

So, having faith just might double your chances of a favorable outcome!

That was fun.

Now, the kicker here is that no matter the outcome, if faith allows me to operate at my best, I am better for the process, regardless of the product. Let me ask you this, do you think the next time I am up against an obstacle in life, I will be stronger or weaker than before this BMT?

See, as my faith increases, my strength increases.

I'll say that again,

As my faith increases, my strength increases.

I know God is ultimately in charge of the outcome of all things, but I also know that I have a say in the process of all things, so I can choose WHO TO BE in the face of ALL THINGS.

And so can you.

What is your biggest obstacle in life right now? I don't want to know that you are doing about it, I want you to look at WHO YOU ARE BEING in the face of it. You can choose that. So, if you look outside and see a result you don't like, and look inside and realize you don't like who you're being to get that result, change who you are being. Try it. I had to shift who I was being constantly to get past personalities, egos, etc. Remember Dr. D? Remember the nurses early on on 5C? When was the last time you heard me gripe about 5C nurses? I had to change who I was being. I was suspicious, defensive, even combative early on with the nurses. At the end, I was a partner, a teammate, open to ideas, but still clear about my role.

So, try being the way you would be once the problem went away in the face of the problem, not after the problem.

Try it, see what happens, and let us know how you did! If I can do that with grief and BMT, what area can you work on?

One 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.

God night.

"The hat is now MINE!" I am sad. Maybe she'll let me borrow it?

Ali climbed up the slide, turned around, and said... UFF DAH! Seriously.