Kohl and the Gang

I consider myself an optimist. But having a child with medical needs as complex as Kohl’s has punctuated that optimism with puddles of anxiety.

So as you sit in your Monday morning team meeting, wishing you were still at the beach, enjoying the first real vacation in years; you assume the worst when you receive a call on your cell phone from your wife.

Is Kohl having a seizure?  Was there something wrong with his feeding tube, I wondered?

Quickly silencing my cell phone, I diverted my attention away from the meeting’s agenda and texted Sarah to find out the reason for her call, which was clearly important since she attempted to reach me on my cell phone after trying my office.

But today’s crisis involved neither seizures nor broken G-tubes. It was tacos (or lack thereof):

When baby girl hawngry, baby girl hawngry.

And speaking of hunger, we learned today that Kohl loves laughing cow cheese. Both Kohl and the cow find this cheese not only delicious, but apparently hilarious:

When one of our two angelic aides sent me this picture it made my day not just because it’s a cute picture. Not just because it was a succees in oral feeding .

The main reason it made my day is because it was one less thing for me to do.

Kohl gets his food via G-tube, and teaching him to eat by mouth so that he can ween off the G-tube is one of many distant goals we have for Kohl.  Among sitting up unassisted, talking, controling muscle tone, avoiding hip dislocation and invasive surgeries. These too are goals.

But they are goals that will require near-constant attention to achieve. They are goals which involve hard work that, by the time Sarah and I arrive home from work, neither of us is inclined to do.

But this was done for us today. It was yet another reminder of how the people we surround ourselves with so often plug the gaps that we create and lift us up as parents when we so often fall short.

Kohl is in good hands.

Dear Amelia,

As you lay there in your big-girl bed asleep, face down and on your knees with your little butt straight up in the air, I felt compelled to write you. (I am still amazed that you find that position comfortable, by the way).

Even though you still shit yourself regularly, you are a sharp little lady.  You will probably be able to read this yourself soon and the temporary phase of your attachment to me will inevitably transition to decades of resentment and finding me extremely annoying.  It’s okay, your mommy finds me extremely annoying too, and she hasn’t dropped me yet.

I feel compelled to write to you because I have watched you grow from a beautiful little blob that could do nothing more than eat, sleep and wallow in its own fecal matter to an amazing little person.  As you are starting to understand, your big brother Kohl has some unique challenges.  He hurt his brain when he was born, so he has a number of limitations that you and I don’t have.  He is my special little man, and you are my special little lady.

I don’t want you to forget that.  What happened to Kohl at birth was not even the slightest bit fair.  It is obviously not fair to him, it’s not fair to your mommy and me, and guess what – it’s not fair to you either.

When most families are going to Disney World or the beach, you have to come with us to some random location so Kohl can get the therapy he needs.  You were born to two overwhelmed parents who love you and your brother more than anything but suffer constantly from varying levels of stress and mental exhaustion. We haven’t taken you on an actual vacation since you were born, really.  There will probably come a time, much earlier than it should, in which you will have to explain to your friends and acquaintances “what is wrong” with your big brother.

These things suck, and they eat away at me.  Because it is just not fair to you.  I know you didn’t ask for it, but like it or not, you’re on the boat with us.  You’re on this crazy, stressful, overwhelming boat, and because of my panoply of imperfections, it is going to be hard on you.  But my hope is that you also understand how magical this ride can be too. Yes ma’am, there are some unique advantages to being in this crazy ass family.

You will learn empathy.  You will not be as shamefully self-absorbed as I was growing up. You will understand suffering, something I don’t think I really had a grasp of until Kohl was born.  You will learn to appreciate the small things and learn to see the tiny little miracles that occur every day that most of us don’t even notice.

You already exude so many of these qualities.  Even though I run my mouth about you being an asshole sometimes, you are only two years old, and all of y’all kind of act like dicks sometimes.  The truth is you are not an asshole at all.  You are one of the most beautiful creatures, both inside and out, I have ever laid my eyes on.

Your intelligence is unquestionable.  Where you have learned some of the words and phrases that come out of your little mouth will continue to be a mystery to me.  You know your letters, your numbers, your colors and all that other shit people your age are supposed to know and then some. You called our mini van the “wag of swag.”  You admonished me the other day to slow down when I was driving that minivan, and you were right.

Perhaps most importantly, you are a kind soul.  The “resting bitch face” expression you insist on having for every school picture belies your true nature.  You gave Lizzie the stuffed monkey a blanket the other day because you didn’t want her to be cold.  You insisted on bringing the stuffed dolphin into Nana and Pop’s house last week because you didn’t want to leave him in the hot car.  The other night was a rare occasion in which Kohl went to bed before you, and when you finally agreed to retire for the evening, you insisted on still telling Kohl good night.  You walked in his room, gave him a hug and a kiss, and then you turned to your mommy, beaming with pride, and said “that’s my brother.”

Ah yes, you have learned many of the most important lessons already, my little lady, and I am not eloquent enough to convey in words how proud I already am of you and how deeply I love you.

Sincerely,

Your embarrassing dad

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