October 14: A New Day +3

Heaveno!

Well, Grandma and Nanny arrived today much to Ali's and our delight. It is nice to see them again; we really need their help and support right now. Angelique and I are fiercely independent, but we recognize how important their presence is right now. Plus, they get along GREAT so everyone enjoys everyone's company... this is not alway the case with in-laws, so we are grateful for how close Grandma and Nanny are with each other as well.

Tonight, we shared a wonderful meal with Deb and Spence to celebrate Collin's actual 4th birthday, which was today. It is just so much fun being with them, I can't even tell you. My favorite part is how much of Spence's accent I pick up when I'm around him. It literally makes me feel good to talk with a Minnesota accent! There is an honesty, humility, purity in it that is endearing to a callous east and west coaster like myself.

Today, we picked out a location for our MN memorial and a temporary urn for Bella. The location is the Enchanted Gardens Lawn at the Como Zoo and Conservatory. It is just perfect. We don't know when it will be just yet; there are still quite a few arrangements to be made, but at least we have a location that just felt perfect when we were there. MN is just so beautiful right now; I am grieving leaving here already. In my head, we were going to be here a lot longer since it seemed obvious that Bella would recover, but in her own sweet time. I was looking forward to Halloween here, sledding, bundling up, fireplaces, basements, and introducing Ali to the beauty and playfulness of snow.

See, snow is m-a-g-i-c-a-l to dogs and children. Why? Because they don't have to commute in it! Where I grew up in CT, if it snowed, they closed school, so snow also meant no school! No school, snowball fights, snowmen, snow angels, sledding, skiing, ice skating, pond hockey... winter wonderland. I remember watching my springer jumping through fresh snow, plummeting her nose into the snow piles, and delighting in the mysterious texture she floated in.

I also believed that since we were facing much bigger problems than weather, the weather would really pale in comparison. Bella's acuity and complexity required her entire medical team, myself included, to bring their very best A game to the case. I have heard hundreds of times from commenters about how thinking about Bella during their daily trials helped put things into perspective. I have a feeling that after this tour of duty, the mundane will no longer hold sway on my attention in quite the same way. I already have noticed that I simply do not even acknowledge the existence of local news, reality shows, cable news of any kind any more. They represent a disproportionate amount of attention on things that have very little to no bearing on my or my family's life. Enjoy them if they entertain you, but they are fast food information at best, and I already subscribed to the low-information diet before I came here; now my focus is located in just a different realm altogether.

See, before we came here, I hoped we would come here, slide through this procedure, cure Bella's EB, and go back to CA and forget all about this "EB thing." As another EB dad and good friend said before Bella died,"Yeah, now you not only have EB, but you have BMT as well." The way I look at it, they both killed our kid. Therefore, there is much to improve in the treatment of both, and I don't like to whine about something I'm not willing to work on myself. I have a personal credo I wrote in 2004:

Here is what you can count on from me:

I light up every room I walk into,

I touch every person I meet, and

I leave inspiration in my wake.

There are years of research needed to cause a real breakthrough in this process of turning the incurable into the curable. That research needs money. Rare diseases get hosed when it comes to funding, because let's face it, if you have a million dollars to donate to a cause that could help millions of kids a year, or one that would only help a few thousand if that, you're gonna donate where it can make the biggest difference. Unless, of course, you have a personal connection to the disease. I have the connection, but I don't have the money. I also don't do research. So, what can I offer? We already offered Bella, and that would seem to be the ultimate sacrifice, but there is more Bella plans to do, and there is more, MUCH more for us to do down here on the ground.

Mind you, I have no ill will toward EB or BMT. Both are here and both provide incredible opportunities, and both come with great sacrifice. Knowing that I am in the bitter grip of pain and grief, I know not to sell the farm, so to speak, but I can tell you that nothing else occupies my thoughts other than how to make sure in 10-20 years from now, no mother or father of a chid with EB has to feel the way Angelique and I feel right now.

I know that many of you are struggling with anger and confusion over why God would "call home" such a sweet innocent baby. This is a very central struggle in society: Why do bad things happen to good people? Personally, I don't subscribe to the notion that "She was so special, God needed Bella up in heaven with him, so he called her home sooner." What does that say about you or me? God is needy? God has favorites? Not in my world. God IS everything, how could he "want" anything? There is nothing in existence that is outside of God, so there is nothing he is without.

I also need to say that I think that getting angry at God is a little arrogant. It supposes that we are equal in understanding to God, and that we disagree with his decisions as if we know better. You can't have it both ways: if you subscribe that God is all powerful and knowing, then he simply knows more than you. Faith isn't trusting God as long as things go well. That's expectation, which is just resentment waiting to happen.

Let me reiterate that.

Faith is NOT trusting in and believing in God, as long as things go your way. That is expectation, and expectation is the root of resentment.

Faith is trusting in and believing in God IN THE FACE of events that do NOT go your way. Faith is trusting that God can simply see something you can't from his elevation. It would be like disbelieving the sailor in the crow's nest on the ship, because you can't see what he sees. He's got the better view, trust him! That would be silly, and so it is with God. If you are going to pray to God for favorable things and circumstances in your life, be sure to be grateful for whatever you get. Then, you'll always want what you get, rather than get what you want.

Again, be in a state of gratitude no matter the situation, and you will end up always wanting what you get, instead of getting what you want, because I am three days into recovering from not getting what I wanted, and working really hard at wanting what I got instead. If I can get to a space of gratitude for Bella's death on Monday, how hard is it for you to transform a complaint you have about something into a statement of gratitude?

Monday, Bella DID say to both Ang's and my dad, who are in heaven waiting for us, "Yeah, I was born with this rare skin condition, but when they (my fellow EB Angels) brought me home (to heaven) from the hospital, it went away."

God night.

The sign reads:

"The Enchanted Garden: A Paradise for Butterflies"

Like flying flowers, like delicate sculptures of stained glass -

Beauty takes wing in the butterfly.

With their stunning colors,

and graceful presence,

butterflies add a magical touch to the landscape.

Very poignant as a description for Bella and the impact she's made in the world.