July 27, 2017
I’ve had some thoughts that have grown out of conversations I’ve had while sharing about Ethan. They are mostly centered around God and somewhat theological but I hope there’s no chance of anyone mistaking me for a well versed Christian. I feel like I am constantly re-learning the basics of my faith and trying to keep up.
That said, I’ve been thinking about death and what it means and what I can do about it. I still haven’t come up with a way to heal Ethan and give him the long life I want for him- oh, if only one’s desire could prompt a medical miracle but I am finding comfort in my belief that death is not something humans were meant to understand or suppose to know how to cope with.
Through my childhood I started to understand some things about life that, of course, seem very elementary to me now. For example, as I get older the people in my life do as well. Therefore the passage of time will freeze my feigned invincibility and begin to crack it like ice beneath my feet. I start to look different. I start to feel different. I begin to realize that this world I see around me won’t last forever. The expectation is that I will have time to grow up and live my life before I hit the downhill track. It’s interesting to think we all grow up with a subliminal knowledge that our parents will probably pass away before we do. We used to think our grandparents were strange for always having a new ailment to talk about but slowly we see ourselves having similar conversations. Life starts to break our bodies down. Life beings to take its toll on our emotions and our perspectives. The kid in me screams out, “no one ever told me it was going to be this hard!”
That childhood angst is difficult for me to let go of, especially lately. I think a huge part of that unfairness I feel comes from my preconceived ideas of order. Of time and what comes first and what I expect to come last. I have a nice little plan that has always been sitting in the background, and I expect that life will be faithful to take the next step and check the next box. Sometimes even difficult things can be squeezed into a slot in my timeframe. Even if I dislike the life event, I can usually still make the timing work and move on and call it “experience.” That was my thinking at least until Ethan.
The timeline idea makes me question if we are all taught to think in this linear kind of way. Perhaps when we learn the second law of thermodynamics, the universal law of decay sets the order for us in our minds. Even Ecclesiastes speaks of times and seasons for everything. A time to be born and a time to die. Times rolls on. Life stops for no man.
Lately, my heart is constantly battling between love, gratitude, and a mess of what used to be an ordered life. Love for my tangle-haired 3 year old, trampling around in his underwear, making me smile- and in the next minute I try to figure out palliative care for my unborn baby. I see my eldest son’s steady focus on creating a terrifying new rollercoaster for his lego people and I have so much gratitude for his mind. Then I think of our sweet baby who’s very brain is being swept away from us everyday he grows. Ethan’s diagnosis doesn’t fit my timeline. I doubt it would fit into anyone’s. “Death is a part of life,” they say. How then, do I rectify having and loving a baby who will be “incompatible with life?” How is that suppose to fit into life’s framework?
I’ve come to think there are a couple of ways I can look at this. I can choose to keep screaming like the child in me and say that “this isn’t fair!” and “this is too hard!” and spin myself around in circles and cry my eyes out. I’ve done that, quite a bit, and unfortunately it only helps to exhaust me. On the other hand I can try to learn some things as I go. Ethan’s diagnosis has changed my perspective and priorities and I’m amazed at how shifted and clear they have become. The little things are put much more easily out of focus. The messes in the kitchen and the lost sunglasses. The errands I have to run and the whiny kid in the back seat. The constant bills and the work emails. The need for more stuff, more things. Life still rolls on and the responsibilities are still responsibilities and the needs are still needs- the difference is they are so much less important to me than I used to make them. The hugs from my kids have always been welcome but now they are everything. What would I do without their light in this dark time? My appreciation for the beauty of the outdoors is at a new high. Real conversations with honest people is like music to my ears. Friends that can make me laugh are like medicine. My desire to help others is stronger than it’s ever been. I want to defend things that are good and true where I would’ve been scared to before. Praying happens almost moment by moment. I hold my husband tighter and kiss him slower and smile at strangers more genuinely. The mess can wait awhile longer and of course the email will be written. I feel like those things have just found their place in the background, while the real life comes into focus.
Be assured, none of this is because I have suddenly become a saint or found my zen or done anything worthy of praise. The childhood angst will still win out over and over again and I’ll be crying my eyes out. But the shift that I hope to hold onto comes from having a mindset grounded in eternity, of things that will last beyond all this. Ethan weighs on my mind. I think of where he will go when he leaves me and I need to be there too. The desire for the things that will last forever pushes me forward much more than it did a couple of weeks ago. Trivial things stay trivial. I want to be closer to what’s next.
I want to remember my purpose as a human on this planet- the reason I was made and the reason God gave me Ethan. Gods timeline is not like mine and His ways are not like my ways. I often wish that it was different but I have to accept that there are many things I will not understand. I struggle with that daily. I do still believe that He never intended for us to experience death and subsequently loss. I have studied and read and even looked for a reason to blame God, but I can’t. I’m convinced that this is not his plan A. He went so far as to pay the ultimate price to change our eternal fate.
Still, I may never be able to stop asking why my baby boy will have to go through this. I doubt I’ll ever be able to reconcile these circumstances with human understanding. There’s no getting around that this will always seem backwards and that life is truly hard sometimes.
It’s so humbling to have your game plan for life thrown out the window. I don’t want to be seeing life in a different light. I don’t want to learn in this way. A huge part of me wishes that there was no good thing that God could do with this heartache. More and more I see that I must admit I am wrong. This overwhelming grief brings opportunity. In this new journey with Ethan, I hope to never let myself forget where my priorities should be and continue to live my life with an eternal perspective.
Thanks for reading,
P.S. We go back for our next OB appointment on August 10th. We will be looking at Ethan closely and checking his levels and mine to make sure nothing is becoming dangerous. We will need to talk to the doctor about hospital delivery and protocol and our desires for a birth plan. We want it to be a home birth experience in a hospital. If that’s not a stretch I don’t know what is. A lot of anencephalic babies come early and so we have to be prepared somehow for that. There are so many decisions that have to be made and so much that we want to have ready when he shows up. We need to know how to pack a life’s worth of memories in a very short time. The planning stage is really hard. Please keep praying if you’re the praying kind. And thank you.