You all know Dante. I knew Dante only because I knew his mom, not very well, through a message board on IVillage for moms of babies born in September 2006. When he was diagnosed with cancer in December 2007, one of the other moms formed a Yahoo group for people on the board who wanted to help Dante and his family.
That group, we called ourselves Dante’s Village Troops, aka, the DVTs.
Because of the generosity of those 15-20 women, we were able to send packages every other week. The packages were everything from Visa gift cards, gas cards, a mother’s bracelet for Dante’s mom, presents for Dante’s siblings and both parents, books, a spa gift card, a grocery gift card.
Pretty spectacular for a group of women who didn’t know each other in real life. And something of which I am very proud.
When Brody had his first surgery at Shriners in Salt Lake, the DVTs even sent us a care package at the hospital, with a $50 food credit in the cafeteria, a stuffed animal, and a book for Brody.
It’s not often that people stun me. I was stunned. And I think it was that moment that I had the beginning of my idea.
Throughout this journey with my miscarriages and Brody, I have struggled to understand, to put it in context. Why me, why us? I thought in a haze of self-pity. Then, as I got to know other kids, I wondered “why us” in a different haze. As in, what am I supposed to be doing with this perspective?
I feel like I am in a unique position. I have glimpsed the terror of having a child with serious medical issues, but we’ve escaped the ultimate loss. We have lived in the hospital, and Ronald McDonald House, and we’ve had to leave our baby in the hospital and go home at the end of the day. I’ve watched them wheel my boy into surgery 11 times. I know what it is to run out of paid leave at work, to wonder which bill to pay that month, to feel isolated in the hospital while the rest of the world goes by, and sit by my child’s bed, watching him desat, listening to him cry in pain, hoping and praying.
To what end?
And why am I being shown all these sick children, and being drawn into their lives through Caring Bridge and Carepages.
All the while, the DVTs are sending packages to Dante and his family. And then Dante passed away, and I missed the flurry of yahoo group posts from my DVTs.
After the first of the year, I was talking to a friend about New Year’s resolutions, and how I didn’t have any. She chided me that I should have some, and asked what me what I really wanted to do?
I said, “I think I might want to start a nonprofit.”
That was really the first concrete inkling. It got me thinking about what a gift we have in Brody, and how unique we are, in that he has a lot of challenges, but not severe challenges relatively speaking. Then I was thinking,what the hell could I offer? I can’t cure childhood illness, and really, is my $50 to fund some research really going to help a family who is lost, alone, and stressed to the point of insomnia and tears?
The next morning, as I was driving to work, I passed by the Church, not mine, that I always pass. The church has, of course, a sign out front. It never said anything really compelling. But that day? It was a new sign. You know what it said?
“What will you do with God’s gift?”
No one ever said the Universe was subtle.
I thought about it. What will I do? What do I have that can help? Then it came to me. I’m a lawyer. I can figure out how to start a nonprofit.
And so I am.
I want to create an organization that helps families of chronically sick children. The families of kids like Dante, Eithene, Elias, Benji, Maggie. . . not just kids with Vacterl, but any child who is chronically ill, whose parents (and siblings) feel like they live at the hospital more than they live at home.
Make no mistake. This is in the infancy stage. I don’t even know what the nonprofit will actually do. I don’t know what the “help” will be (a great deal will depend on the funding, I imagine). I don’t know what the criteria will be, or even the name of the nonprofit.
And when I told my husband that I was seriously thinking about this, he completely flipped out because, he said, “You have a full-time job, and you always say you don’t have enough time for me and Brody, and you have trouble sleeping. Now you’re gonna add a nonprofit to run to all of that??”
Yes. I’m doing it.
We have two more surgeries on the immediate horizon for Brody (that we know about) and I need to really get a few things set financially before we even think about making this reality.
But I’m doing it. As my dear friend C says (you should read her new blog): “unless we follow our hearts, we won’t get where we are meant to be in this lifetime.”
And this is where my heart is leading, so……
As for the name, I can’t decide between something boring like the FirstName LastName Foundation, or something abstract, like ZuZu’s Petals (already taken in the Colorado corporation database). Saturday Brody was looking out the window while we were driving. I asked, “Are you looking at the sky?” He answered, “Yeah. Five skies. I see five skies.” So now I like the Five Skies Foundation or something, but that’s nonsensical.
There you have it.
Any and all suggestions welcome.