Tuesday, April 25, 2017

Prologue: The years in the desert

I have had many opportunities to share our family’s story at remembrance events, workshops, coffee shops, and grocery store checkout lines. Ethan’s life, death, and the beautifully devastating aftermath and the ways God has shaped my heart through both have usually remained the focus. I often begin with the day that we discovered that I was pregnant with Ethan.

The truth is, the story begins years and years before this. There is a prologue to our story that has shaped so much of the proceeding chapters. There were three years of pain, longing, and expectation that led up to that day.

Our pregnancy with Ethan was a long-awaited answer to prayer and I savored every moment, each ache, every sick morning, and every contraction. I loved and cherished my pregnancy, despite how turbulent and risky it ended up being. Each day I marched forward feeling the full weight and reverence that comes with years of longing. Not one moment was wasted on me.   

I felt the weight of the countless times I had slipped to the bathroom to cry after yet another woman had announced her pregnancy.

I remembered the countless times I had smiled and desperately tried to brush it off when someone had innocently asked me when my husband and I wanted to start a family.

I remembered how helpless I felt when the doctors continued to poke me with needles and run countless tests, only to find that I was “healthy”.

I remembered the feelings of guilt and failure when the doctor told me that I would not likely become pregnant without costly fertility treatments.

I remembered the feelings of inadequacy as a wife and a lover.

I remembered the nights I felt like failure. I remembered the disdain I felt toward my body. 

I remembered how lonely it felt to walk through life appearing completely healthy, yet feeling so broken inside.

I remembered hearing about a friend’s miscarriage and feeling heartbroken for her, while simultaneously wishing that I could trade places with her—if only to know what pregnancy felt like for a few days, even if I were to experience heart wrenching pain later.

Today I still feel the weight and the reverence that comes from the years that served as the prologue to our story. Today I still feel such gratitude for the sacred experiences of carrying, laboring, and delivering Ethan, despite the heartbreaking ending that would follow. I am thankful for each day I carried him inside of me, each minute I had with him in my arms, and each moment of physical and emotional pain that came with it. It was an experience that I so desperately longed for. It is an experience that I so dearly cherish. Ethan gave me the gift of motherhood. He is the most beautiful and special person we’ve ever met.

It’s National Infertility Awareness Week and I’ve wanted to say something, but have been at a loss for words. My sisters with empty arms have been heavy on my heart because I know. I know the weight and the depth of a yearning heart.

August will mark two years since I first held my son in my arms and said goodbye to him 93 minutes later. Since then, we have said goodbye to two more babies. Once again, I have found myself at the receiving end of a diagnosis—this time, more severe than the first. At times it feels as if I have been led out of the desert, only to be led back again to wander.

I’m no expert, but there are some things I’ve learned over these last few years that have equipped me to reenter this season with hope. Hope looks much different than it did before—it is not hope in a physical healing, although I do believe that God can do this. It is hope and confidence that God has led me to this place for a purpose. He has chosen me, just as he has chosen you, to live in this place—this desert place—to have the greatest impact.

I’ve shared this before and I’ll share it again because it has been one of the most powerful pieces of encouragement I’ve ever been given. Shortly after we found out that Ethan's health conditions may be terminal, a mentor figure wrapped me in a tight hug and said, “No matter what happens, I promise you that God will not leave you empty handed.” In that moment she encouraged me to cling to hope that God loved me, despite how terrifying this journey was. She reminded me that He had good things for me, even if they did not come in the form of healing. This was the truth that I needed to hear. Not an empty promise that Ethan would "be just fine". I needed to be reminded that in this world, I may lose everything—but if I have Christ, I have everything.  With Christ, my arms are full.

Matthew 7:11, Jesus says,  “If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!” Our Heavenly Father loves us. Like a loving Father, He will provide. He will satisfy. He will fill our arms with good things.

This doesn’t necessarily mean that God will provide us with an open womb, with biological children, or with physical healing. I confidently believe that He can—but I also know that he may have other plans that are still so good and so loving. He may fill our arms with something else—something so different than we could ever imagine, but still so very good.

For the first time in my entire life, I genuinely feel peace in the realization that I may never raise biological children. It’s not that I don’t care anymore—I do care. There is a corner of my heart that will always ache over all we’ve been through and all that is missing. There is a natural longing inside of me that will not die. But for the first time, I have such joy and excitement over a future that may not include another pregnancy. I have a sense of purpose and belonging, despite how unconventional my life has turned out. I know that I can still have a ministry and an impact, even if it is in ways that I never would have imagined. I know that my heart is exploding with love for my children, and that love has begun to multiply and spill out onto the world around me and I don’t want it to stop. If I never become pregnant again, I’m going to be okay—we’re going to be okay. 

Five years ago, I never in a million years would have imagined myself saying this. Today, I truly mean it.

If you’re finding yourself here today, know that it’s natural to desire pregnancy and there is no shame in joining Hannah and so many barren women in the Bible who cried out to God for children.  It’s okay if it hurts and it’s okay to question. It’s okay to cry when you see a newborn baby or to unfollow the friend who posts daily pregnancy updates. But when it gets really hard, I want you to remember that you have not been forgotten. You are not alone. Your Father loves you and will fill your arms with good things. You have purpose and have been placed in this very moment, in this very chapter, and in this very season for such a time as this.

Friday, April 14, 2017

The death of death

This year, I have felt as if I am experiencing Easter for the very first time all over again. Growing up in the church, I have been very familiar with the Biblical account of Easter. I could recite all of the details but I had grown so accustomed that I had begun to take it all for granted.

 I had taken the cross—the death and the resurrection of Jesus for granted. Ouch.

 After our son Ethan passed away I began to contemplate eternity. I began to question the meaning of it all and I was challenged to make a decision—when the rubber meets the road, what do I truly believe? As I watched my son’s soul pass from his body, I was forced to grapple with my beliefs and decide whether or not I truly believed that his soul was now with Jesus.
 In the following months, I questioned. I cried out to God, often times in anger, and I searched the scriptures for answers.

 The deeper I dove into the gospel—the story of Jesus being sent to earth to die on the cross for our sins, to serve as the atoning sacrifice for our wretchedness, and to rise from the grave 3 days later, conquering death for all time—the more I began to see the truth. It was through my doubting and wrestling that I truly came to confidently believe.

 Last week, I found myself in tears over what the resurrection truly means. The resurrection signifies the death of death. Through the resurrection, we have been given the opportunity to be brought from death to life, from sin to sanctification, from an eternity of grief and pain to an eternity with God.
 Consider this with me for a moment—the DEATH of death. As I let that sink in, I cannot help but rejoice that our God knows our suffering (even more so than we do) and came to abolish the very thing that has brought us the most pain.

Happy Easter to each of you. May we rejoice that He is risen indeed.

 John 11:25 “Jesus said to her, ‘I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me share never die. Do you believe this?’”
 2 Corinthians 5: 1-5 “For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens.  For in this tent we groan, longing to put on our heavenly dwelling,  if indeed by putting it on we may not be found naked.  For while we are still in this tent, we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life.  He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee.”

Thursday, April 6, 2017

Preparing for a baby you may not bring home

When my husband and I became pregnant with our first child, I counted down the days to our anatomy scan. I couldn’t wait to get a closer look at our little one and finally learn whether we would be bringing home a baby boy or a baby girl. Our celebration quickly turned to worry when the doctors told us that our sweet baby might not survive long after delivery. I can clearly remember the moment we were first told that our little boy would likely fight for his life. I remember staring intently at the geneticist, trying to soak in every word as tears poured down my face. I remember feeling deafened by the questions that swirled through my mind.  

Hydrocephalus. Missing cerebellar vermis. Heart defect. Possible chromosomal abnormality. Developmental delays. Potentially fatal. The room spun and I desperately tried to grasp at words I knew as I was bombarded with terminology that I did not understand.

We never considered that we might not be bringing home a baby at all.

We were left to consider a heartbreaking question. How do we prepare for a baby we may not bring home? How do we embrace life, when death may be eminent?

I wish there were a manual for this sort of thing. I wish there were a formula to outline the proper way to face such a heavy dilemma. There was nothing that could have prepared us for the road ahead. Yet in the same vein, I want to share a few of the steps we took that helped us immensely and a few we didn’t that I wish we had.

Choose a Name
Naming Ethan played a powerful role in preparing for our son’s arrival. Even through we cherished him from the beginning, choosing a name helped us strengthen the bond with our son. To us, he was our Ethan—our little boy. Choosing a name also made it easier for us to own our family’s story, share with others, and ask for prayer and support—We had a son named Ethan who we dearly loved, anomalies and all.

Educate Others
Talking about Ethan’s condition was difficult, but it helped our friends and family know how they could support us and it helped us feel more supported.

Determine how much or how little you want to prepare physically and don’t let anyone make you feel guilty for it
The question of whether to prepare a nursery and whether to have a baby shower are the two questions that I receive the most from other mamas who have been assigned the treasured task of carrying a baby who may not come home with them. This is not a clear-cut decision and there is no easy answer. My advice has simply been to not allow guilt or shame to influence their decision. 

Some people may say that it is foolish to purchase items for a baby who may not have much time on this earth; others may argue that showering your baby with gifts is an outward sign of love—perhaps even an act of faith. People you love will have every opinion in the book and I encourage all parents in this difficult position to remember that their child is not focused on the “stuff” that you can give them. Stuff is not a sign of love. They will feel the love you have for them whether you decorate the nursery or not. They will feel the love you have for them whether you have a celebratory shower or not.  

If you want to decorate a nursery and have a shower, go for it! Savor each moment and make memories in the process. Personally, we decorated Ethan’s nursery. Although it was painful to come home to the nursery I had always dreamed about without him, it has turned into a calming retreat on those especially difficult days. Over time that room has transformed from a place that caused me pain, to a place that only holds happy memories—memories of my husband making me laugh as he assembled the crib and dreaming together as we folded tiny outfits. 

Preparing for Delivery
Don’t be afraid to ask questions and to find a medical team that is supportive and sensitive to your needs. While many of our doctors suggested termination, my primary perinatologist was highly supportive of our decision to carry our son to term and treated us like any other family. That made all the difference to us.

Create a birth plan—and, though I hope and pray you don’t have to use it, a death plan. I am so thankful that we took our time saying our goodbyes to Ethan’s body after he passed from our arms into the arms of Jesus. However, the fog of grief (and post-childbirth hormones) I wish I had thought to ask to bathe and dress him—it never even crossed my mind that we were allowed to do that until it was too late. Although painful, it may be helpful to consider these things ahead of time.

My biggest and perhaps only regret was not arranging to have professional photography done at the hospital. There are several nonprofit organizations, such as Now I Lay Me Down to Sleep, who offer free professional photography to parents who are giving birth to a baby with a potentially fatal diagnosis. Part of me felt guilty looking into this ahead of time, since we did not know whether Ethan would live or die. In hindsight, I wish we had more photos. Don’t feel guilty connecting with a photographer, even if you are not 100% sure of the outcome—none of us ever are.

Savoring Each Moment
One of the scariest, yet rewarding, decisions we made was to do our best to fully embrace each moment that we had with our son. We were told that Ethan could die before birth, die during the delivery, live for a short time, or go on to life a long life. We had no idea how much time we would have with Ethan and we considered each day to be a gift. We went on walks. We ate delicious food. We went camping. We talked to Ethan all day. We introduced him to all our favorite music. We read to Ethan each night. Yes, it was terrifying in moments to open our hearts up so wide knowing that they could be shattered in the end, but it was worth every moment of diving headfirst into celebrating each and every day we were given. We have realized that none of us are promised tomorrow and are thankful for a little boy who showed us that each day is a gift.

To the mama walking this difficult road:

Sweet Friend,

I’m so very sorry that you’ve found yourself here. I know this is not what you ever envisioned for your sweet baby and I know you’d give anything to trade places with them.

I know that you feel as if your innocence and happiness was stripped away from you with that crushing diagnosis. I know that you feel as if some people want you to simply move on and "just try again", while others won't even acknowledge that your child is in danger. I know that people often say insensitive things to try to console you—they really do care, even though it may be hard to see. 

I know you are scared. I know this hurts in ways that words can’t explain. I know it all feels so horribly unfair. 

I know you may feel guilt and shame--I know that you didn't do anything to make this happen. I know you'd do anything to change it. 

I know that this is sensitive territory and I want to assure you that there is grace upon grace to be given, despite the decisions you have made or are considering making. I know that we are all trying to do what we think is best for our babies.  I know that this is all terribly confusing.

I know that this is the hardest trial I have ever walking through. I know, without any doubts or hesitation, that every discouraging prognosis, every ultrasound, every appointment with a specialist, every sleepless night, every contraction, and every tear that I have cried since saying goodbye has been worth it—I know that the seven months I carried my son in my womb and the 93 minutes I had with my son in my arms were worth all of it. I know that I'd do it all again if given the chance. I know that there can be some joy in something so broken.

How I wish I could wrap you in a tight hug and cry with you. If you are in this place today, please know that you are not alone. I want you to email me. I want to know your baby's name. I want to know your due date. I want to pray for you as you walk this road. 

You are not alone in this. You and your baby are so loved. 

So much love,

Ethan’s Mom