Prognosis: pain

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
Revelation 21.4

July 22, 2017

Hello dear reader,

I am writing this blog for selfish reasons mostly. Reasons like memories and self expression and healing and coming to grips with life’s reality. In a less selfish sense, I also hope and pray that my words could be a source of comfort and a sense of community for someone else struggling with the unthinkable. In times of pain it can be natural to bottle yourself up and feel so alone and deserted. At least that is my tendency, but perhaps not a healthy one. I have recently been very encouraged by reading the words of parents who have lost their precious baby to dreaded diagnosis’ that seem foreign and frightening until they greet us face to face. I have read their journeys with tears streaming, and then my heart raced as they triumphed over what seems impossible to face- as they find beauty in the sorrow. I don’t consider myself to be any kind of great spiritual person, much less a counselor in trying times. I do think that an honest experience shared can sometimes be the most help. When the raw, ache of emotions can flood out, the aftermath can be just as raw and real and beautiful and true.

I am 20 weeks pregnant with our third son, Ethan Lion. Ethan has been diagnosed with a neural tube disorder called Anencephaly. It will mean that his skull will not form correctly, leaving his brain tissue exposed to the amniotic fluid in utero and over time dissolving part or all of it. Babies with this disorder either can be born sleeping or live just minutes or hours. We have been reeling ever since we heard the word from our doctor. Its hard to describe the feeling, unless you’ve experienced it. Humbling, time stopping, and world shattering are phrases that come to mind.  I knew, and Josh knew, that as long as we knew Ethan wasn’t in pain (which he isn’t) we did not want to end Ethan’s life, even though the termination of our pregnancy was continually suggested. We didn’t create his soul and we had no right to take it because we weren’t happy with the result. There is no real danger to the mother or the baby in carrying your anencephalic baby to term, it is just something that is not often done. After learning his prognosis it has been just over a week carrying Ethan in my womb, and I can see why the majority would think that ending the pregnancy might make it easier. No mother is born equipped to deal with death and loss of this kind. The daily reminder of what is to come and what will never be is really too much to bear at times. It’s only my trust in the One who created me that will ever get me through.

I am ashamed to say that I am very much a realist and as much as I appreciate trusting in God’s ability to do miracles and optimism, a large part of me knows I will soon be losing my baby. We live in a broken world where things are not fair and where suffering is the norm instead of the exception. Hope in our situation means that I choose to believe that God will walk with us through this and that I will be able to use this to help others in small ways. I will be able to donate my breast milk to babies who wouldn’t have it otherwise. I will be able to empathize with other families who have suffered through a terminal diagnosis of a loved one and hopefully bring comfort to them. If Ethan makes it to term, there’s the possibility that after he passes he will be able to give a life saving organ to another baby who would die without that organ. It might seem morbid to think of these things but the realist in me wants to look reality in the face and figure out how to see some light in the darkness. If Ethan lives through this then I will be eternally grateful for the miracle and be more overjoyed than I can imagine. I know God can do anything. I also know that we humans are weak and fragile and the bible calls us dust- and that sometimes things don’t make any sense or fit our perfect picture. I choose to hold on to the only thing I know and that is that God will walk us through this and He will be the only thing that can sustain us through this pain.

I need Ethan to be remembered. I need him to stay in the hearts and minds of the people who care so that he can continue to exist beyond his short life, and live beyond in our love. I am blessed with carrying him now as he grows. Motherhood is a crazy beautiful thing. Every kick and little movement is so cherished. I feel so relieved when he decides to move around when I eat something cold or sweet, or even when his big brother Noah accidentally snuggles me too tight around my belly. We know that Ethan’s life here with us will be very short. Forever too short and until our family leaves this earth we will long for more time. There are so many unknowns and we feel like we are hoping for scraps and bits and pieces of what we would have had with a healthy babe. Will we get to actually hold him while he’s still breathing? Will he be able to hear our voices? How can I comfort him if I can’t nurse him? Will seeing him make it so much harder to say goodbye? So many unknowns and so many torturous questions.

I read something that speaks about this kind of hurt and I think it is so beautiful. “Grief is not a sign of weakness or a lack of faith….it is the price of love.” We love you so much Ethan and that’s why we hurt so bad. Every day your momma gets to spend with you is such a gift and we will keep praying for the strength to be present and purposeful in our lives while we wrestle with our broken hearts.

With love and thank you for reading,

The Schreer’s

P.S.    Your prayers are so valuable so please send up a good word for us. Even though in the past I have not attempted to cultivate a community outside my bubble, there’s no better time to start than now. If you have read this and you are going through it, whatever “it” may be, please know that I want to pray for you too. If you aren’t the praying kind that’s ok, I still would love to hear whatever you’d want to say. I will try to continue to update this site with our progress as we get closer and closer to holding our little guy. Thank you

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.

The Wheel in the Sky

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

Love Eternal

September 9, 2017

Hello again, dear reader,

We had another ultrasound with the pregnancy specialists we had been referred to. I wanted to share a photo or two of our boy. We know that he looks strange to anyone not accustom to the look of anencephaly but all I could think about was how cute he is. He’s got a perfect little nose and pudgy lips and even though his eyes seem to have the tell-tale swelling due to his condition, I know I will want nothing more than to see him look at me and let me kiss his little lips and feel that I love him. Feel that our family loves him. The rest of his body, below his eyes looks very normal. He’s measuring about 2 weeks smaller than he should and we’re hoping to see him pudge up and gain some weight to increase our chances of meeting him on earth.

My amniotic fluid levels are slightly elevated, which can happen with this diagnosis. The brain controls so much- nearly everything, and so Ethan seems to be unable to swallow as much as he should and therefore the normal flow of fluid and the normal processing of that fluid isn’t happening correctly. If my levels increase too much it can cause severe pain for me, and increase the chances of pre term labor substantially. We will watch him close and I will keep enjoying his kicks whenever I eat dessert.

Emotionally we have serious ups and downs. My belly is undoubtably round and pregnant so I am enjoying the “congratulations” and the innocent questions about my due date and the  exclamations about how crazy it is going to be to have 3 boys…. of course I battle with the reality of what’s to come and I break a little whenever I need to field the questions I get. In many ways I love this process because I know he is safe and without pain and close to me. The choice to see a situation in a certain light is just that, a choice. I have been gifted with this little baby boy and will always be his mom. My family will always be his aunts and uncles and brothers and grandparents and cousins.

I’ve heard it often said that we are God’s children. I believe that this is true, regardless of whether we chose to see God as our Heavenly Father or not. I really have had to think about the gravity of that relationship lately. I have come to see a beautiful and devastating image of giving Ethan back to God, since he was always His to begin with. My older kids that I’ve been given are both specifically designed for me here and are designed to benefit others they meet and in turn be part of my life’s challenges and joys and triumphs and I say that with pride and humility both. I know God made them to do great things in this world. I know that God has a purpose for all of us. It seems like he is asking for Ethan back a little early. My little lion has a life that has already taught us so much and forces us into a new dimension of love and trust and obedience. If in my humanity, if I can love my kids as much as I do, I have to believe that our almighty God loves my Ethan even more deeply than I ever could. Who am I to argue with him if he wants to hold Ethan for us until we leave this place?

I wish all this was as simple in my heart as it is in my head. Love is a powerful thing.

As before, we ask for prayers and wisdom and strength to make the most of everyday.

Ethan Lion at 27 weeks. We love you little man ❤️


Ethan’s day and Weakness.

October 12, 2017

After our appointment today for Ethan, I lay here in bed on a beautiful sunny day and feel dark and weak and shattered. I am not sure what I expected to find from our visit,  but I think the tragedy that lies ahead is still battling some leftover hope in my heart. I hope that Ethan can get to 37 weeks. I hope that he could be breach so that his head has less trauma. I hope that my labor could start naturally. I hope that at worst, this could be a normal pregnancy with the most dreaded of endings. I hope for more time. I hope to feel him move and kick for weeks to come. But even these hopes seem to be slipping through the cracks of real life.

I know that no news that can be good enough to change Ethan’s diagnosis, but I didn’t expect the physical ramifications on my body to be leading the charge of the bad news.

Today Ethan has grown for 32 weeks inside me but my belly is measuring 39 weeks.  I feel every inch. The pain is sometimes so debilitating, I started to wonder today if I should even be driving due to how distracting the pain of the pressure is. The fluid levels for a normal pregnancy can vary from 5-25cm. I am measuring at 40. The heaviness and unnatural weight is stabbing and relentless. It is effecting my breathing, my back, my blood pressure and my sleep. Our little Ethan still isn’t swallowing and the normal circulation is just not happening. I can’t believe how fast my levels elevated and it’s hitting me like a truck what that means for us.

Physically, I don’t know how much longer my body will allow me to go on like this. Labor was already going to be difficult due to Ethan most likely not having the glands to signal my body to start labor at the right time, therefore requiring induction. It just seems like it’s all happening too fast and I am discouraged that it doesn’t seem like even one aspect of this is going in the right direction. I have so much fear and I wish I didn’t. When it comes to labor in the past, I trusted my body to do the right thing and it has always been worth it to brave the pain of natural labor because I knew that my body would perform as designed. This time it’s uncharted territory and I feel like I have no control. I’m scared to rely on induction and contractions caused by drugs. I’m scared for him to come before term. I’m scared for what that will mean for his chances of being born alive. I’m scared of how long it will take my body to respond and how unnaturally painful it will be. I’m scared that this is forcing the last chapter of Ethan’s life to be written so soon. I need more time. I don’t want to face this part yet.

I know that it’s nothing less than fear and sadness that drives my thoughts as I write this now. I am crying out to God and my community and feeling a lot like the Psalmist of the Bible in his darkest hours. I know that God will be with me and I know I should give this heart wrenching pain over to Him but I am so tired and broken and I feel only like collapsing at His feet. I have to think of my other boys here that need me to function for them. I have to think of my husband and what continuing to carry Ethan means for our day to day life in my weakened state. The hardest part of course, is thinking of Ethan. I wish I could carry him forever until he can somehow be born with a better chance of meeting us. The primal, maternal need I have to protect him and allow him to grow safely inside me is just overwhelming.

I need prayers. I need truth and peace resounding in my head instead of this fear and this sadness. I need wisdom for the hardest decision of my life- a choice of when it’s right to bring Ethan into this world and ultimately say goodbye to him. I need strength for this physical pain. I wanted Ethan’s day to happen on its own and it’s just unbearable to have my body forcing my to rush to choose one instead.

I need His strength. I cannot do this on my own.

Pray for us to know how to navigate this, dear reader, dear friends. Soon our boy will be here. Send a shout out for Ethan’s little life and God’s hand to guide what’s next. ❤️

I remember now a verse that was shared with me by a close friend and I have to cling to it.

2 Corinthians 2:9-10 “My grace is sufficient for you: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my sufferings, that the power of Christ may rest on me.”

Barnes Commentary on this verse: “My strength is made perfect in weakness – That is, the strength which God imparts to His people is more commonly and more completely manifested when His people feel that they are weak. It is not imparted to those who feel that they are strong and who do not realize their need of divine aid. It is not so completely manifested to those who are vigorous and strong as to the feeble. It is when we are conscious that we are feeble, and when we feel our need of aid, that the Redeemer manifests his power to uphold, and imparts his purest consolations.”

Holding love and loss in your arms

October 21, 2017

How do I begin to write of this ending?

What a trip to be here reliving it all and come to grips with the fact that the dreaded event itself is already over so soon and so sudden. Part of me is embracing these last two days because of how close Ethan still feels and how vivid my memories are and how soaked in love I have felt by people near and far. Part of me is terrified of when that will all stop and change. Most of me is bracing for every new minute and trying to remember I do not walk alone in this. My family and I now step onto the unknown emotional path of processing this pain and ache and longing. Now is when faith and trust and future hope are in great demand and will be challenged the most. Now is when the truth is more powerful than any doubt or fear. Now is when it is so difficult to allow that truth to overcome all the waves of overflowing sadness and grief.

The truth is that Ethan is being snuggled and adored by my sweet grandparents and is enveloped in His heavenly Father’s arms of perfect peace. I know this in my mind but my heart still longs for him to be here with me in my arms. Such a strange paradox. The truth is that Ethan is whole and fulfilled and gone from pain and anguish and suffering. I know this in my mind but I ache to have him back in this broken place with me. The truth is that God knew Ethan’s life would change me and teach me and show our family a unique lesson about unconditional love. I know this in my mind but selfishly I wish I didn’t have to learn it in this way. My emotions will battle with the truth for years to come.

As soon as my water broke, I broke. I knew. I knew that his time would come too soon and I knew it meant that I could no longer hold on to the hope of keeping him growing with me here. It felt like his death sentence was finally being carried out and I was forced to be a part of it. It broke the spell of this being a bad dream and only a future horror. I cried the hardest then, out of fear and anger and sadness and my loss of the last of my control. Ethan was always in God’s hands but I felt like I was robbed again of the only thing I would ever want. More time.

After that, everything amplified and my body kicked into electric primal mode and we were forced to detour and stop at the closest ER. It wasn’t where our planned doctor and team was. It wasn’t a hospital we knew much about. If Josh hadn’t pressed for it, I would’ve had Ethan in our bathtub at home. My body was begging me to. Instead I went through the most intense part of my labor in the car and it is not one for the bucket list. Josh was wise to urge me to get to somewhere safer. Looking back,  I could’ve given birth to him in the car, the parking lot, the ER waiting room, or the endless hallway, but by God’s mercy I was able to make it to a hospital bed with a team of wonderful nurses before he arrived. The time between my water breaking at my house to having Ethan in the hospital was about 50 minutes. A gift and a heartache. So brutally fast but not fast enough to meet my precious son earthside.

All my fears felt realized when my water broke. Somehow I think I knew that he would have to leave and I wouldn’t know when and that the physical pain I would be in would keep me from being present for him in that moment. I could sense him and feel him kick while I knelt there on the floor after his protective fluid started to drain, and I think the last time he moved with life in my belly was during the intense contractions on our 10 minute drive in the car.

Seeing him here was one of the most powerful experiences of my life. He looked so perfect in some ways and so broken in others. Even so, his physical damage did nothing to diminish his beauty to me. His cheeks were so soft and perfect to kiss and his nose and lips were tiny and incredibly soft and beautiful. He was a soul entrusted to me and given back to my Jesus on his 33rd week birthday. To the day.

I’m 33 years old and I have jokingly called this my Jesus year. (bc Jesus lived on earth 33 years) I never thought of that silly label as anything more than a way to make 33 seem like a less boring number, but now I think God has chosen to use it as another way to comfort me. Another way to help my simple mind realize His eternal perspective. This is my Jesus year because He knew I would need Him to carry me and understand my brokenness and give me grace to survive my pain. He knew what I would face long before I did and long before I claimed my year in that way. In response to every detail I was so afraid of and all the anxiety I had about Ethan’s birth, God’s hands were moving and directing our path and those who came on it with us. This is my Jesus year indeed.

A lesson learned on Wednesday is that a good nurse is an angel walking. I have absolutely no doubt in my mind that this is a fact. Everyone we had attending to us, from the social worker to the RNs, to the lactation counselor or the OB, were incredibly respectful, helpful, calming and gracious. I felt like I was meant to be in that room and everyone who came in the door was given to us as a new source of encouragement or comfort. I am absolutely not one to be overly complimentary and a sad truth about my personality is that I can be very skeptical and guarded unless you can prove I should feel otherwise. That said, every single person who came in and out of our door was a blessing. I had spent painstaking hours and invested so much energy into writing a very specific birth plan and had arrangements of all kinds planned for this day in a different city in a different hospital, with all my fears hanging in the balance. God watched over us as every plan we had was undone and we were merely trying to survive the night.

Of course, most of my intensity in planning was due to my extreme desire to be possessive of my short time with Ethan. Every second would count, and if only I had it all figured out on paper and got everyone on board, I could somehow rig the system for us. I worried about having to deal with the disregard of my birth plan or insensitive nurses or emergency intervention that would keep me from being present to meet my Ethan. We wanted so much for the short time to be protected and precious. I cannot begin to explain how impossible it should’ve been to have everything go as peacefully and smoothly as it did. We were in a complete whirlwind that night. There’s no way all of my planning could have ever done as perfect of a job as His planning did. His timing was perfect and even though I will never understand why brutal, painful things happen, I have more trust than ever that His ways are higher than our ways and He desires that none of us should ever have to walk through the fire alone.

Hospital food is still horrible though, by the way. I guess the angels in the hospital didn’t extend to the kitchen 😁

Here are some of our moments with our boy. Nothing can ever take away the time we had to hold him and kiss his cheeks and marvel at his tiny little body that once held his spirit. Please remember him and send prayers our way as we miss him and ache for a different ending to all of this. Thank you for giving your time to read about our family. Now I beg for God to continue to use Ethan’s short life to help teach me how to live out my days here. I don’t want to waste all the chances for growth that can come from being so broken down. Ethan, you will always be the gift I wanted to keep but had to give back. Momma loves you with everything I am, my precious son.

From earthside to heavenside in 33 weeks.


Both the blankets in the photos and the hat that protected Ethan’s head were handmade by my sister Hannah and two special moms I know, Cathy and Rose. I am so grateful to have had these gifts for him.<<<<<<<

Carrying On

September 26, 2018

Hello again dear reader,

It has been almost a year since our family lost our littlest boy. Maybe this is a cliche thing to say in such situations, but it literally still feels like yesterday. The trauma has faded in some ways, softened maybe. For such a little, tiny guy, the hole that he created when he passed is so massive. The pain of loss to me feels like an emotional black hole, that will be ever present, with only my own willpower and God’s grace to keep me from being sucked down into the dark. It’s a strange part of our family now, and there will always be this painfully empty spot. So in reflecting back on this past year, the time does seem tainted by the shift in our reality, even though we still have so much to be grateful for.

As I lamented in my writings through Ethan’s pregnancy, life does continue on and the world does not stop spinning even when you feel like it should. This past year has been full of new things for all of us. We started at a new preschool, started middle school, bought a house, gained a new family member, started another company, joined a club, and took family vacations. There have been many highlights, between birthdays and family dinners and one on one talks and encouragement and support in all forms from loved ones. I don’t want to gloss over the good. The good is what has got us here, finding our next steps, and pressing on. The good is what makes me feel comfort when I think of what I want to do to celebrate Ethan on his birthday in October. The good is great and I want to hold onto all of it.

One point of sweet goodness in these past months has been becoming pregnant with our baby girl. Initially, Josh and I had very different feelings about the next steps for us as parents. Josh felt strongly about not giving up after our loss and seeing if we could get pregnant again. To him, it felt like defeat and he isn’t one to wallow, even though he was grieving deeply at the time. Personally, a day felt either like a blur or an eternity during the first couple of months after we lost Ethan and I couldn’t hardly hold my head up, much less think of trying to have another baby. The time that Josh and I we were at odds on what we were going to do felt like forever. We both were going through this sadness in our own way and we both were trying to navigate how to give to the other what we thought they needed. This situation is not ideal for any marriage. We sought a lot of wise counsel to help the issue not tear us apart and slowly I came to understand what he felt and I agreed that we should try again. We would later learn that my broken hearted husband was coping in the best way he could and missing Ethan came in tidal waves for him, and a huge one came when he realized he couldn’t fix the pain, even by having another precious baby. Regardless, we now are both feeling so excited and so many intense emotions about the chance to bring a daughter into our family.

The test results below are how we found out about the little lady we are carrying. This was an NIPT test done to screen for several conditions and it also allowed us to know the gender at only 11 weeks gestation. As you can imagine it was incredible, seeing the negative results.

I remember my breath catching when I saw she was a girl. And then I proceeded to cry-laugh. Just a complete insanity circus of emotions inside my heart. I realized that the idea of having a daughter is so beautiful for me because I feel like she won’t ever have to compete with Ethan as my youngest son. In a strange way I was terrified of a replacement or a similarity that might cause me to lose something I want to hold onto with just Ethan. This thought process is a total hormonal short circuit I’m sure, but it felt so perfect to have this baby be our only girl. A balance in our family, and a sweet newness.

Needless to say, after those results and the first few ultrasounds, we felt positive and hopeful, but since that early good news, this pregnancy has become a rollercoaster for us again. As far as any doctor or specialist can tell us, she is healthy and all of her parts are present and functioning well. Around 21 weeks we were told that baby girl has symmetrical Intrauterine Growth Restriction, sometimes interchanged with the term SGA, small for gestational age, which means she is below the 10th percentile for weight. If you’re unfamiliar with the terms like I was, this does not mean she’s shows signs of dwarfism or a skeletal problem; just that she is proportionally smaller in overall weight than average on the growth chart. The first time we were told this news, I happened to be alone at the appointment and was given a very negative outlook on her chances and told that I should be induced by 25-26 weeks, (what?!) and that it could be a chromosomal issue. I was told that we should be given steroids the next week to speed up her lung development so she has a better chance. They also found a very small vein varix where the umbilical cord meets her body, which means the vein slightly dilates in that area. I began to feel like the rug was being pulled out from underneath me again. At the same time, the doctor also is half-heartedly explaining that baby girl’s very important doppler readings that are indicative of whether she is getting proper nutrients and oxygen to her umbilical cord and brain look healthy and perfect. So, cue the explosion in my brain and the all too familiar lump in my throat and sinking of my heart. I immediately reached out to friends and family members and get in touch with others in the medical field to get some feedback on all of this. How has this happened all of a sudden? Because of our history with Ethan we had begun our pregnancy visits as “high risk” and we knew that she had been examined very closely each appointment. I began furiously researching and picking apart any pieces of information I could on these condition and all the possibilities. Through diving into this new world of terminology, I felt so much skepticism and confusion, as if even though I could accept what I was hearing and reading, it didn’t seem like this was going to take her away from us. It felt like it was a rash diagnosis and the recommendation to induce so early really struck me as wrong. On that point, many others agreed with me, including medical studies. Unfortunately the realities of her being a small baby are frightening and IUGR is linked to still birth or major complications at birth.

I fully admit that my mental capacity to indulge in the possibility of losing our baby daughter is gone because I think I might actually disintegrate if that happens and so I am choosing to believe that the best outcome can be ours so I can carry on with my day to day. The next visit came and went with her continuing to show growth, but still lingering in the lowest percentiles. The doctors also backed off on the steroid push to be so immediate. Thankfully, because we seemed to see a new perinatologist every visit, the next appointment was with a doctor who had a completely different approach and was much less of an alarmist about baby girl’s condition. He explained that even though she was in the low percentiles, she was still showing growth on an upward curve all her own and that she looked very healthy otherwise. Her vein varix is very small and not worrisome unless it begins to dilate further. He suggested that the best thing to do is to wait and watch as we had been and that I should to start eating like a body builder. He was the first one to bring up the possibility that she might not be IUGR, but just a constitutionally small baby. So here we are now, with me on a high protein diet but balanced diet and our little love still continuing to grow more everyday. We’re trying to stick with visits to the less-of-an-alarmist perinatologist who I trust to be on top of her progress if she starts to fall off her growth curve but who seems to not want me to worry about the worst case scenario just yet.

I know that I have so much to be thankful for and that becoming pregnant again in itself is something that many women struggle with. I know the pain of miscarriage and I remember struggling to be joyful for others when all you want is to be able to conceive and keep your own. I am so grateful for this little girl and I have so many emotions I battle now as I feel her move and we go into each appointment. The black hole still threatens to consume me and fear is just a quick thought away as I process all of this each day. I hate being afraid. I’m so tired of being scared and worried about my babies making it. The fear is such a burden and so debilitating if I can’t shake it. To try and combat this, I am daily trying to take my thoughts captive and focus on some ancient wisdom from the Bible. This particular verse encourages us mere mortals to take all of our fleeting, flickering thoughts and control them and shift our mind to, “whatever is true, whatever is noble or just or pure- whatever is lovely, or admirable or praiseworthy…” This has been much of my survival kit for awhile now. I’m am trying to let go of what I can’t control and choose less cortisol and less anxiety and love on my boys and my little daughter who keeps me up at night and give the rest up to my Creator. If you’re dealing with stress or anxiety in your own unique circumstance, I’d encourage you to try something as simple as a mental change and take your thoughts captive. I know how quickly my mind can race and I can be robbed of so much contentment I could be having with what’s right in front of me.

As always, I cherish your prayers and good thoughts and hope to have good news to report in the coming weeks. We have made it 30, so only about 10 more weeks to go. Everyday she stays with us and grows is a victory.🙏🏼

These photos of our baby girl also help as a major pick me up when I get lost in my thoughts. So far, the only name I know we have picked out for her is her middle name, Hope. ❤️