The other day, I was updating my former second line manager about Micah's situation. I explained how we're happy that Dr. Donofrio at Children's was able to break down the key concerns about the 22q deletion as it relates to the heart disease. The two major concerns: baby has poor calcium and/or poor immune system. Getting additional knowledge is like getting new batteries to a small flashlight...that I am using to navigate through a dark cave...that is filled with goblins. Anyways! In this conversation, I'm noticing that my colleague starts getting those signs of visible stress about my family's situation.
This type of conversation has happened multiple times. As Laura and I pray and strive to understand/cope/learn/grow, we are distancing ourselves from how -straight up - sad this all is. Laura and I have our "trigger moments" every couple days, but we've decided that we need to be strong and need to be loving - at all times, regardless of our situation. In a way, this has built up our emotional defenses.
Doctors/family and friends say "prepare for the worst, expect the best." I got tired of that saying, real quick. What's the worst that could happen? Well, what about me getting into a car accident, Laura being on her own and Micah dying in surgery. FYI, that's what goes through my head when someone says "prepare for the worst." How can anyone prepare for something like that? That's crazy... I'm definitely digressing, but the point I wanted to make was that Laura and I are preparing for difficult situations (Micah going into surgery right after birth, Laura going into pre-term labor, Micah not developing mentally as fast as Dylan, things like that). In that type of mental preparation, we grow immune to the smaller things - like talking about how Micah has a hole in his heart - no, not the kind that heals itself.
I had a conversation two days ago with my good friend from work. He came by to check up on me, say what's up and see how the family is doing. I felt fine, we were doing well that day and the past week. But in a routine amount of "here's the updates on Micah's/Laura's situation" my man gets emotional. Real life happens from the hours of 9-5 M-F. Real men get emotional. (I know you're reading this, by the way, haha, my bad).
These moments remind me of two things. 1. We're going through some hard times. 2. There is no normal.
I watched a video a month ago, there's a camp in PA (Dragonfly Forest) that accepts kids with special needs. There's a moment in the video where a child says, "There's no such thing as normal." Boom, hit me like a rock. I've lived 27 years measuring myself against predetermined standards. Comparing, competing, judging myself. It's just not healthy. Even though I've come a long way on my personal comparisons, like "Man, I wish I was making more money, in relation to other ISE graduates working in the area" it's a whole new ball game in making that leap of re-defining or eliminating the idea of normalcy when I think about Micah. Thinking about how everyone is on a unique path, everyone is in a different time of their journey, everyone has struggles and everyone is valuable.
To think that Micah will not have a normal life is a wasted thought. He's going to be born, go through pain, struggle eating, struggle learning, struggle sleeping, be curious, be happy, be loved - sounds familiar. Any time that I spend thinking negatively is time wasted. I can spend my time loving others, loving Dylan, loving Laura, loving Micah and even loving my crazy dog.
(Old photo)
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