August 17, 2017
Sometimes it takes my breath away when it hits me that the world will continue to spin on when Ethan comes and goes. Sometimes, I can’t even say his name without breaking down, much less acknowledge that the majority of the people who share my same planet can’t be bothered. It’s so bizarre because of course, the swirl of the masses around me shouldn’t have to care about what’s going on in my life. They don’t know this part of my story so why would they? The people I see at the grocery store or the restaurant or the park have no idea what road I am emotionally walking. How silly of me to be fascinated by the continuation of it all. How time goes on. The world keeps on turning. Society as a whole doesn’t notice. I assume this has been the way it works since the dawn of man. I suppose that’s why we have been given families and gravitate towards community. We long for someone to notice. We need to feel like part of the world cares.
I really did feel so perplexed when we first learned about Ethan’s condition. First came the inevitable why’s and how’s and the shock of it all. An avalanche of emotion. Then I continued to be perplexed. It was hard to believe that I still had to get in my car. It was weird that I still had to crawl through traffic. It still was going to be my son’s birthday party that weekend. Didn’t anyone hear what we just heard? How could things be moving forward when everything had just crashed to a stop? It was like watching a slide show of our life go by at first. I could focus on nothing except the news. I’m sad to admit that I still struggle with this reality check, daily. It makes me think how many thousands, no, millions of other people go through the same feelings. Something impossibly difficult hits you in the heart and you can’t breathe and you look around and it seems no one in the world notices as you internally writhe in pain. How many people do I see everyday that have had their lives turned over like a snow globe and I’m the one who doesn’t notice how they’re crying on the inside?
There’s a saying that goes something like, “Everyone you meet is fighting a battle you know nothing about. Be kind.” Unfortunately for me, I tend to learn best from experience because I always have to find the hardest way to truly gain wisdom. I am hoping to learn a little bit more about what that phrase means through my current experience with it. My battle is raging everyday, usually silently in my heart and mind. I hope that someday this will get better, or easier; maybe when the past is in the rear view mirror. When I start thinking about other people’s battles, I have to admit that I don’t like my neighbor sometimes, in the sense that Joe Public is my neighbor. People bug me and things annoy me and it would be fair to say I don’t always find it easy to be kind. I often forget how so many others have difficult lives I know nothing about. If I take a second, I can conclude that most people face more adversity than success that life is probably putting more people through the wringer than it is embracing with favor. I can conclude that the solid bet should be on most people experiencing some hardship at any given time. What can I or should I do about this?
I know for a fact that Ethan’s condition is rare. It occurs about 1 time in 10,000 births, because most babies with Acrania or Anencephaly miscarry early on. If I stop thinking of only myself for a moment, I remember that there are thousands of rare conditions that Ethan does not have but that other babies that belong to other mothers do have. I am not an island in my suffering. Rare and unexpected things happen to someone somewhere all the time in this big world. Tragedy strikes the rich and the poor. I know that there are millions of people suffering from cancer or serious illness or suffering alongside a loved one. I know that there are accidents on the freeway almost every time I check my phone. The news is almost always full of horrors. There is so much going on around this planet and in my bubble locally that can cause people to stop and face life and death. Events that force us to acknowledge we are not in control. I don’t mean to write tonight to harp on the negative or be depressing. We all know life is hard. I only mean to illustrate for myself and anyone who needs it the extent of the unseen battles. Lately, I feel a special kind of sensitivity towards how I should look at others, since I have had to learn the way others look at me.
Trying to live well in these next few days, weeks, months with my boy growing inside of me, feels like a take your breath away event over and over again. Groundhog Day in an ambulance on life support. It’s hard to face the world and mask it in a way that says everything’s normal when you feel like an alien in your own skin. If I see a friend who doesn’t know about Ethan’s diagnosis and they ask about him, I often feel I must be talking about someone else’s life- this cannot be something I’m going to have to go through. But who am I to say that life can’t take a hard turn for me, just because it’s me? Anyone who has had their life shaken up has had to come to terms with the fact that they are not above it. The comforting subconscious thought of “it will never happen to me” leaves you feeling very humble and very vulnerable when it actually does happen to you.
It might seem crazy to my readers to hear about all these strange internal thoughts of mine. I don’t know if they are normal or not, but my mind doesn’t stop trying to process this sadness. I know that I am not the only one who is walking in a daze because of a hardship in my life. I felt compelled to write tonight after I imagined how many times I’ve walked by someone who was experiencing great tragedy and I didn’t notice a thing. It’s funny how these powerful components that make us such a unique species can be churning around inside of us, and no one can see any of it from the outside. On a tangent, it makes me wonder about before the fall of man in Eden. Perhaps we wore our hearts and emotions and spirit externally somehow, instead of bottling it all up inside our bodies- our bodies that now act as our shells, our masks, our armor. There is so much depth to our souls and so much that makes each of our stories unique. I wonder what the world would look like if we could all see the feelings and heart aches and emotional needs of others as easily as we could see eye color or skin color. I’d like to think we might stop and talk to a passerby more often. Share our humanity and our suffering as brothers as sisters more easily.
I decided I want to ask God to help me be more attuned to the invisible needs of others. It’s something I know would make my life easier in my interactions with strangers. In my current emotional state, it’s something I wish more people had, so selfishly, I could benefit. I don’t want people to feel pity for me or my family. I do want people to smile more just because they know I need it. I do wish that more strangers could go out of their way to pay it forward. I would like it if others could know that’s it’s been a tough day and I need to be given a little more patience, or maybe a little extra help. If I want all those things from others, I first should learn how to give them out. I want to do better at seeing the real world, the spiritual world that’s underneath everything else. There’s no one thing that can take the pain away that aches and nags at me everyday. I know I could never fix all the pain in another person’s life. I also know how much a small kindness can mean when the rest of the world just keeps on turning.
“He has shown you, O man, what is good. What does the LORD require of you, but to act justly, to love mercy, and to walk humbly with your God?” Micah 6:8
P. S. So far Ethan is still growing and still moving a lot and we’re not experiencing any complications as far as the pregnancy goes. We’re looking forward to our 28 week appointment when we will hopefully get to see him again on a 3D ultrasound. Of the countless photos I would have taken of him over the span of his life, I will have to settle for as many photos in utero and when he’s born as I can get. The preparation and planning for his birth and then death is completely impossible to me. I end up taking 1 step forward and 4 steps back so I’m not making much progress there. Thankfully my mom and immediate family are helping and I know there are so many people who have promised to pray for us. Thank you for walking this road with Ethan and I. -H