November 15: An end and a beginning

Heaveno!

Well, yesterday was just about as good as it could have been. Thanks again to all who participated in the day. Your presence, whether it be in person, in spirit, over the internet, it all contributed so much to the beauty of the day. Three wonderful photographers captured the event all in their own way, and over the next three posts, I'm going to share how they saw the event. Today, enjoy pictures from Ang's step-dad, Rodger. I know that the pictures won't be congruent with the text they surround, but we'll all survive. I just didn't feel like doing a slide show.

Today was not quite so hot for me. The walls of grief hit early and often and HARD. I sprung up at 6:00 am after a good 8 hours of sleep (I went to bed uncharacteristically early yesterday), but realized how early it was, and treated myself to a little extra rest. This was a bad idea. 4 hours later, I was still in bed. I didn't bring Ali to daycare today as I could tell she was needing some mommy and daddy time. Daycare just isn't stimulating enough for her anymore; we need to find a new school out here for her and fast!

The house is a disaster, and it's driving Ang nuts, so I tried to pull Ali-detail and free up Ang to work, but this was much easier said than done. See, last winter and spring, I watched the girls 4 days a week, and they went to daycare only one day a week. We are saving up a down payment on a new home, and me staying home with the girls helped a ton in that category. Anyway, while Ali and I played around the house today, I couldn't handle the GIANT ABSENCE OF BELLA. The grief was just beating me over the head all day. Remember that 'cement helmet' I described a while back? Well, that was the sensation I had throughout the day. It was so bad that Ang had to drive to her brother's for dinner tonight while I sat in the passenger seat.

I broke down crying a couple of times in front of Ali today, and she really wasn't that into talking or even listening to what was going on for me. That's okay; I'm just trying to show that it's okay to cry in grief if that is what you need to do. Later, when it was time to go to bed, she asked mommy to read her the two books on losing a sibling that were given to her by the hospital. She works things out in her own way and in her own time.

We had a lovely dinner with my mom and step dad, and my aunt and uncle who were in town for the service, along with Ang's brother Steve and his 2 kids at his house. Ang's mom and step-dad came by to visit as well. It was our big outing as we had stayed home all day.

Now what?

This is the question anyone who has lost a loved one, whether it be parent, spouse, or child, has to wrestle with. What is our "new normal?" Where is our "new normal?" To serve God's divine plan sometimes means doing things you don't want to do. "Ad maiorem Dei gloriam" is a challenging philosophy to really live. It requires one to put the ego on the back burner and live from a place of humble service, and this is not our western way at all. Our western way is to exhault the holy ego for the betterment of one's self, regardless of the ripples this lifestyle causes. It is critical to develop and honor the self insofar as it expands its ability to help others, but that second piece of the previous sentence seems to get forgotten too often along the way.

I find that my brain is the most serene, most focused, and most confident when I am concentrating on two things only: how to serve God, and how to serve my fellow man. What is opening up for Ang and me right now is that we have a tremendous opportunity to share our wisdom from this journey with the world. We also know in our hearts that we can raise the money the researchers in Minnesota need to isolate the stem cell that is responsible for this amazing process of bone marrow transplant. In doing so, they will be able to more accurately apply chemotherapy and hopefully with less collateral damage. It seems easy to us to raise the money; we want the doctors utilizing their unique ability which is to be in the lab and the clinic, not at a million charity events and fundraisers, and not at their desks writing grants. It takes 6 weeks at minimum to write grants, one of the docs in MN explained, given their complex nature.

Would you want one of your employees out of work for 6 weeks trying to find money to pay themselves? Not an efficient use of their time or expertise.

Look, what do I know about making a lot of money or raising a lot of money? I'm still staring at giant student loans and a tiny retirement account, but my heart tells me that money is a product of value creation, and it's not "hard" to make. It just requires a recipe that heretofore I haven't properly followed. Well, enough of that. Time to really cook with gas. I have met some real dimwitted, uncharismatic buffoons in my day who are RAKING in money in their respective industry despite themselves. If they can do it, I can do it!

Lastly, the whole money conversation is so meaningless without a context. No matter how much we make or raise, we can't ever experience the joy of how challenging it was to care for Anabella. So, since we can't have that, why not make the world a better place instead?

Theresa Liao, one of the other EB BMT moms who lost her son in the trial said something similar to the following, and now I get it. Before Bella died, I didn't get the urgency, but now I do.

RDEB took Bella's future away, so we're going to take RDEB's future away.

This is now our life's work. Seems worth it to me.

Do you know what your life's work is?

How are you going to leave the earth when you die? The way you found it?

Why not either do a few upgrades around the place yourself, or maybe help out with someone else's project. Just don't leave it the way you found it, okay? That's too easy, and as my wife said in her eulogy, "Where is the reward in doing what's easy?"

God night.