Three words changed my life forever.
No, it wasn’t when my wife Sarah said “I love you” to me for the first time. It was not when my dad Reuben caused me to laugh uncontrollably for several minutes when he called me a “stupid imbecilic fuckhead” on a road trip after I inadvertently tore up the directions he printed out from Mapquest. (Yes, my dad still uses Mapquest. He also still has a flip phone and uses AOL as his email provider).
While those moments were significant, the three words that changed my life forever were ones I had never heard of and still have trouble pronouncing: “hypoxic ischemic encephalopathy” or the much simpler abbreviation, HIE. This is the medical term for brain damage caused by an abrupt lack of blood and oxygen.
It was, we would later learn, what happened to Kohl during labor and delivery as he checked into this world.
Medical science is in the very early stages of uncovering the mysteries of the human brain. This is both exciting and frustrating. It is exciting because uncovering those mysteries can and will create new and better ways to care for kids like Kohl whose brains have taken a hit. It is frustrating because traditional medicine, many times, is woefully behind the curve when it comes to treating these kids. So parents have to figure a lot of this stuff out on their own.
For well over a year after Kohl’s birth, I don’t even think I knew what HIE was. I don’t remember hearing about it when he was born or during his month-long stay in the NICU. We certainly knew nothing about the various “grades” of HIE nor were treatments like cooling protocols made available to us. We were given some basic information, none of which was specific to the issues we were facing with Kohl. I remember being so overwhelmed, not knowing where to begin and being almost envious of parents of children with neatly-categorized conditions like down syndrome or autism for which resources were presumably more readily available. I was seeking a one-stop shop for information and resources for Kohl’s “condition.”
We found that with a group called Hope for HIE. There, we connected with many other parents dealing with a lot of the same issues. No, this group was not a panacea for us. Far from it. But benefits, in the form of information, resources, and personal connections with parents fighting similar battles were obvious.
But one gift was unexpected.
There are probably swaths of information out there on the psychological benefits of helping others as a way of dealing with grief over a lost loved one or a traumatic incident. While our number one priority has and will always be taking care of our family first, both Sarah and I talked frequently about wanting to do “something” but we just did not know what.
Now, this is not a request for a pat on the back or an attempt to show how “altruistic” we are as a family. The instances of my shameless desire for attention and affirmation are many, but I promise this is not one of them.
No, I believe that everyone faced with some sort of major difficulty, at some point has an itch to give of themselves, in some way, to help the world deal with that difficulty. A few months after we joined Hope for HIE, a lovely young lady called Betsy Pilon, the president of this ragtag organization, scratched my itch.
Ever the vigilant protector of this group’s interests, Betsy saw my credentials as a licensed attorney, and she immediately went on guard, assuming that I was yet another douche bag ambulance chaser, seeking to exploit the Hope for HIE membership for my own personal gain. But after further review, Betsy realized that I was just a douche bag and made a connection. Against her better judgment, she eventually asked me if I would be interested in being the fundraising chairman for Hope for HIE.
On one hand, it seemed crazy to want to volunteer my time and energy – both finite resources – in the service of others, especially considering Kohl’s many needs. We should be devoting all our time and energy to caring for our own child, I thought, not volunteering for some group that helps other parents, many of whom have children with issues much less severe than Kohl. And while I had a passion to help and baseless self confidence, I had no fundraising experience and no idea where to begin.
But like most major decisions in life – asking Sarah to marry me, deciding on career paths, or choosing which color mini van to purchase – I went with my gut.
Fuck it, I said, I’ll do it. Okay, so how do you “fundraise?”
The next two years would yield some more benefits:
- We raised some money, grew the organization and are positioning it to help more and more parents and other care takers of HIE kiddos.
- I got to connect with and meet even more HIE parents. I have gotten to serve on a board of directors composed of all-volunteer parents that have their own kids, full time jobs, and more stress than most people, but they devote their time anyway. They have tolerated my tomfoolery and kept me around even after my numerous and wildly inappropriate comments and friends in my network that make donations to the group under names like “Hugh Janus.”
- It finally lit a fire under my ass and forced my wife and I to put together a fundraiser here in New Orleans, something we had talked about for years but had never taken action on. We took action on it last year, had no idea what we were doing but did it anyway and had a great time, raised some money and we have BIG plans for the event moving forward to make it of benefit not just for Hope for HIE, but as a tangible difference maker in improving care for pediatric brain damage in our community.
As my time raising funds for this organization winds down, I have reflected on those benefits, but I have also realized that the biggest benefit was also the most unexpected – it has helped me heal.
Life is full of irony. It is full of dichotomies. It is full of things that seem counterintuitive. That is what makes it so interesting.
Agreeing to be fundraising chairman for this organization made no sense. Routinely asking my network of family and friends to donate money to an organization when we could have used that money ourselves for home renovations or therapy or stem cells or even a damned vacation made even less sense.
But giving back like this has helped me heal. It has helped me grieve. And most importantly, it has helped me be better for this little turd.
If you would like to make a donation to Hope for HIE, you can do so here: https://hopeforhie.nationbuilder.com/donate