Fallout

 
We're definitely feeling the effect of the anniversary of Simon getting sick. All weekend I very intentionally did not want to dwell on how hard things were 2 years ago. Laura started to cry as we drove out of town last Saturday, talking a bit about that day, and I could feel myself physically steeling myself against any of it. I just wanted to have a fun, light 24 hours with Laura and then Sunday have a sweet little visit to the hospital to say thank you to the staff and enjoy our block party.

But the feelings are there regardless of *when* I want to feel them. When I've had the opportunity to "have feelings" this week, I said, "I don't really want to talk about that day" and then proceed to burst into hysterical sobbing. As our process of grieving has proceeded, it's much longer between episodes of having the raw emotions we did at the beginning, but when they're up, it feels just like we're back to that time.

Last night Laura and I were trying to touch base after I did an annoying thing I have done for the last 8 years that mysteriously set her off into a rage. She's really struggling right now and it's coming out as really low patience/tolerance for anything extra.

I totally get it. Sitting on the couch, looking at her crumpled face, I was able to put some of it into words, "We're light years away from where we were 2 years ago, but we're nowhere I ever thought we'd be. What we're doing, what our lives are like, the ways it is hard, is beyond anything I could have imagined for us." This weekend I wanted to focus on the light years journey, but now it's time for us to continue the process of integrating what it really meant for us in the big picture.

Eyes brimming with tears, Laura told me that the feeding therapist watched Simon yesterday and said, "It's going to be a long road with him". The other little boys in Simon's feeding therapy group EAT, just not very much or only very specific types of food. Simon does not eat. Period. They're on the growth chart, but just low. Simon is not even on the growth chart. We're starting at zero where these kids are at 3 or 5 or maybe even 6 or 7 on a scale of one to ten. We have known it's not likely that he's going to magically start eating in 6 months, but to hear a professional articulate where we are on the scale is...sobering. It's just a concrete reminder that we're someplace entirely different than we could have ever imagined.

Laura said she realized, with great sadness, that she was going to be taking him to feeding therapy appointments for *years*. We are going to have to find a preschool for him in a year that will accommodate his feeding situation (special school? Paraprofessional provided by the school that we have to trust to do his feedings?). It will be years before we can travel without bringing a big ass commercial blender in our luggage or a case of nasty Pediasure. Years before we can leave the house without an ice pack for the food bag.

Yes, yes, I'm grateful and blessed and oh so happy that we are nowhere near the terror and horror and specter of death of two years ago and our lives are very charmed in a lot of ways But you know what?

This is fucking hard.

It's hard on us as parents and it's really hard on Laura (and somewhat on me) as an individual trying to lead a full and happy life and it's hard on us as spouses. We mostly take it day by day and it seems manageable. But every once in a while, when we lift our heads out of the water and see how far away land is, it's downright devastating.

So Far

 

It is two years to the day that Simon was diagnosed with Cardiomyopathy. It was two years ago today that we started our four month stay in the ICU at Children's Hospital Oakland. It was two years ago today that began the absolutely terrifying, most devastating time in my life when I learned what it truly means to be broken and in despair.

It was also two years ago today that I learned some of the deepest lessons in living in the moment, savoring joy (I mean truly savoring it) and allowing myself to be held, loved and completely cared for.

I remember each phase of this day two years ago; from Simon waking up and feeling like things were a little off, to hearing that first wheeze, to the ER doc telling us that it was not Pneumonia, to those last moments of holding him before handing him off to Dr. Williams so that she could intubate him and hold on to the little bit of life that he was holding so frailly on to.

This day two years ago sucked. It sucked hard.

And for sure there were moments that followed that sucked just as hard if not harder (e.g. like the weekend where we decided against having him listed for a heart transplant and thought that we were going to have to say goodbye or having a departure date in early November, getting within 48 hours of it and then having Simon catch another staph infection, go septic, and almost die).

But here we are, two years later, and I am in love with my son and my wife in ways that I couldn't even have imagined.

I am living a life where I laugh and I cry with a sweeter kind of abandon and even more than I already did...I don't take anything for granted.

There's no time to.

It's exhausting for sure but it sure as hell beats the alternative that Jaime and I were so close to. Like SO close right?

What an unbelievable ride.

And here we are, two years later. There is no mistaking that this time is so far from where we've been.
Jaime and I just returned from our first ever 24 hours away from Simon.

Thanks to our amazing family (blood and otherwise), Jaime and I took off on Saturday morning for a full 24 hours of jaimelaura time. We travelled to Napa, Yountville, Oakville, and St. Helena for a full day of adult recreation.

We got in and out of our car on a whim. We walked around a town or two, drank coffee, held hands, sat for a 2 hour lunch at Brix, and spent a completely restful night in a hotel where there were no syringes, no medications, no midnight wake-ups, and no crazy cute kid talking in his sleep.

There is no way that two years ago I could have imagined getting to the point where I felt safe enough leaving Simon with three different sets of people (Ginormous love-filled shout out to Anne & Eric, Dre & Joan, and Mamaw D & Grandpa Eddie) who covered his medications and tube feedings for a solid 24 hours.

There is no way that two years ago I could have imagined the amazing little boy that Simon has become. He says please and thank you. He greets complete strangers on the street with a wide smile and overly pronounced "Hellloooo". He has a beautiful arc of expressing sad or mad feelings and then let's us know when he is done, by saying "Oh-Tay". He now says "Shabbat Shalom" as well as "Hola" and "Adios" appropriately. He gets dirty. He wipes his nose on his sleeve. He leans his head all the way back when he's swinging.

He shines.
Two years ago today his light almost went out.
Today, I feel like there is no light that shines brighter.


And to you all, thank you so much for being right there. For whatever part of the ride you've joined us for, thank you. Though there have been times I couldn't do anything but cling to myself or Jaime, there has never been a time when we were completely alone. Thank you.