Death and disorder

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,

The Schreer’s

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.

Author: Heather-Lynn

I am a perfect dichotomy. I am a cynic, but I champion hope. I aspire to be many things but I limit myself to being only a few. I am an ambitious mother and a happy wife. I am a explorer who likes to be grounded. I am a writer who doesn't often write. I love making music as a shy singer. I am an old soul and a young mind. This is my life and I like it very much. Please enjoy.

13 thoughts on “Death and disorder”

  1. Heather,
    Tears are rolling down my cheeks. That was so beautifully written. My heart is broken for you , Josh , Sam and Noah. You will cherish every moment you have Ethan. Love you all, Ma

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  2. Dear Heather, I cannot express how amazing I find this latest entry. You astound me. I love you. We will always continue our prayers for you and your family.

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  3. Dear Heather and Josh, I had to sit in a quiet spot when I started reading this. Jo Ann sent me this blog and alerted me to this extremely unfortunate and sad situation you both find yourselves dealing with. Sadly I can say that I know the kind of pain you are both in having been through this with a child myself. You have expressed yourself in a way that most people cannot because getting out the words are extremely difficult in a horrible situation such as this. Any words that I can convey will probably be repeated over and over again by many good friends and close relatives but when this happens we find ourselves in a world that cannot even be imagined by other people and those of us that deal with the situation find that you we are isolated in a world that only we can understand. Expressing yourself and dealing with your thoughts will help you and create a better understanding and acceptance for both of you in the future. Deal with this together in a very supportive way and you will eventually reconcile the conflicts that usually occur in times of grief. God did not make this happen. We may never find out why our children are subjected to illness so early in life. We are forced to be strong in order to continue our own lives and support others that are dependent on us. “Time” passing is the magic healer but we never forget things like this. Ethan’s existence will be in your hearts and minds forever but your lives must go on in a very productive manner in a tribute to him. He is the reason you have been able to open your heart to others and will change your life and your attitudes forevermore. You will be able to thank him for this and know that this horrific occurrence in your lives was strangely something that will become very positive in your lives as you make progress. I know that at this time it is hard to imagine but I truly believe that we live in the hearts and minds of others that we affect in our lives and the energy that is expended in this process is sustaining throughout successive lifetimes. You are both in my thoughts during this time and I deeply regret that you must endure so much pain in your lives.

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    1. Hi Larry. I believe this is your original comments and I dont want you to think they were lost and wasted. We appreciate your thoughts and honesty and wisdom so much. I did not know that you had lost a child in this way and Im sure you know that there are no real words that can bring total comfort. I think you impart great wisdom from your experience though and I especially agree that Josh and I will have to be supremely patient with each other in the coming months, weeks, years…. pain has been a dividing factor in my life before and I dont want that to happen to my husband and kids and I. I love that I still have to amazing boys who need me to function and who bring so much happiness to my everyday. I am not sure where I would be without them and Josh. Thank you so much for your heartfelt words and prayers. God is good and I know we will be able to understand why someday. Much Love to you Larry from us

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  4. Heather, I am so heartbroken for you guys and can’t find any words that seem right. I am moved by your depth, amazed by your introspection, and totally inspired by your strength. Thank you for sharing your journey.

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  5. Heather,
    As I read your words know how much they are touching hearts ♥️, hearts that obviously love and respect you tremendously but also hurt and attempt to learn from this journey as well.

    My personal thought is your heartfelt words are helping others as you write and I pray that helps to provide a piece of healing and purpose during this most challenging time in life. I am going to continue to pray for you and everyone who loves sweet Ethan, you can count on that .
    I am also with your permission going to share your blog with my tribe of prayer warriors to lift you and your sweet baby up as I imagine God’s arms wrapped around you . Sending you love, hugs and a giant thank you for touching my heart and teaching/reminding this older lady through this message ❤️
    Deanna

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    1. Deanna- I would be honored to have Ethan’s life and our family shared with your tribe. I absolutely believe that God grants me the strength to write and share like I normally wouldn’t because this pain would be so devouring if I left it all internal. I want Ethan to matter to people. I want to find the good we can share in our suffering because I know God loves doing that. Much love to you and thank you so much for your encouragement and truth you share.

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  6. Heather,
    Your first son will always be so precious to me, though he probably doesn’t remember the times I spent with him. I think taking care of him when he was sick put him in a special place in my heart. I love that Noah looks so much like Sam. And I feel an odd attachment to Ethan though I haven’t been connected to your family in years. I loved Sam so much because his story reminded me of God’s redemption, and I admired your strength from an early age. I admire you more and more, because all of this takes so much strength. Going through it, crying, not crying, taking care of your family, explaining it, writing out your raw feelings. I love how honest you’re being with yourself, with God, and with others. I cry when I read your posts, and I pray. I can’t imagine that I’ll be around anytime soon to say “if you need anything, let me know!” But you have my prayers and my empathy.
    ❤ Lauren

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    1. Lauren, you are such a blessing to me with what you said. I do wish that kids could remember more of the people in their life from their real young years, but I remember and I will always be grateful for how fun and creative and sweet you were with Sam. Your prayers are so valuable and I hope you keep them coming. Much love to you sweet sister

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