***Trigger Warning***

Throughout pregnancy we couldn’t decide on a name. We picked a few and thought we’d wait to see him before choosing one. We knew God had a specific name, a destiny, for this child, we just couldn’t put our finger on what it was. During the final push before his birth, I heard the name Asa as clear as day in my head. This was one of the names on our list. Asa is an Old Testament king who was known for bringing the people of Judah back to true worship. His name also means healer and life.

Honestly, I’m having difficulty recalling what the first few days of Asa’s life were like. These thoughts and events may not be in chronological order, but it’s what I can remember. This is all taking place within the first week.

1) As Ryan and I left the hospital one afternoon, I recall saying to him as I gestured the space between us, “This is a safe space. Nothing we say here can be judged and there is no guilt or shame. We are in this together, we cannot let this isolate us from each other. It won’t be healthy for us to be alone with our thoughts right now, we need to be open and free to say whatever we’re feeling.” And that was all it took. We bravely shared thoughts and emotions with one another that we felt guilty to have.

C.S. Lewis writes, “Friendship is born at the moment when one man says to another “What! You too? I thought that no one but myself . . .”

I found Ryan in the darkness and fear of my own thoughts as I heard him say he was there too. I found a friend in hell. I could feel our relationship grow it’s roots deeper as we connected and journeyed through that uncharted territory together. It was one of the purest times we’ve ever seen each other. If you can imagine, it’s like telling someone your deepest, darkest secrets while feeling fully known, accepted, and loved within them. Not being afraid to share your ugliest self, not being afraid of rejection or judgment. (Seeing a great parallel here).

2) Within the first 24 hours in the NICU, every doctor was convinced what Asa’s condition was. All they were lacking was proof from the blood panel that had not yet returned from the lab. Still, they talked to us and prepared us as if it were 100% accurate. After a few days, the geneticist finally sat us down and confidently said, “We are almost certain that your son has Trisomy 18 (Edwards Syndrome). “Incompatible with life” is a common phrase with this diagnosis. The life expectancy for this is less than 1 year, rarely into early childhood, and even rarer to 10 years”. As sincere as could be, she knelt down between us and hugged us. Ryan and I looked at each other and simultaneously broke out in tears. For some reason, the first thing I said was, “He is supposed to be with us for the rest of our lives”. We couldn’t fathom this news. I was fearful that at any moment, he could die. They proceeded to tell us that we should prepare to take Asa home without any interventions. That Asa would be on hospice and we carry on with life as usual. That we would watch for signs of his passing and try to make him as comfortable as possible. That as he was passing, a nurse could bring morphine to help ease his pain. That we wouldn’t have to call 911 because his death was already to be expected and paramedics would try to revive him, which would not be necessary.

I thought, “How could we not try to intervene while we watched our baby struggle for air? How could we sit and just watch that happen?” I also thought of the meaning of his name. Worship quickly changed that week for Ryan and I. Every song was now different, every lyric meant something new, every thought held a deeper place of connection  and admiration of God. A worship song came on called ‘King of My Heart’ that repeats, “You are good, you’re good…” and I imagined us playing that song while he passed, KNOWING that in the midst of that coming pain, God was still good. Don’t ask me how that belief was never shaken, because I honestly have no idea.

3) Throughout the first week of Asa’s life, this week of believing that death was to come, I found myself scared of the dark. Ryan would suggest that he go stay the night at the hospital with Asa while I stayed home with Koa and I would ask him to stay with me. I couldn’t sleep through the night because I was pumping breast milk and the thought of waking up alone in the middle of the night terrified me. As the sun would start setting, I’d turn on unnecessary lights throughout the house. I think it’s because the night time invited stillness and silence, and I wasn’t ready to be alone with my thoughts. I wasn’t ready to not have the distractions that come with daytime. At the same time, I envied sleep. Ryan and I would periodically take naps throughout the day since we were catching up on 48 hours of no sleep and child birth. I envied him as he slept. In my mind, it was a way to escape from the pain. All the while, the moment I would wake it felt like I was abruptly waking up into a nightmare. So there was actually no escape. I wanted to sleep to escape but I didn’t want to sleep because the fear of waking.

4) One of my best friends, Krissy, gave me a piece of advice that carried me through this time. She talked about the gift of moments. She said, “You can allow your heart in that small moment to serve him, to hold him, to speak love and life into him. In that one moment. You. Can. Right now you don’t know if you have enough love to carry you through a year or five years or through care taking or through loss, you just don’t know and it’s too big to figure out right now but you certainly will wake up tomorrow and carry love out that front door and to the hospital. I think if you break down your moments in each day, you’ll find out how much strength and love you have to carry on to the next”. I know this word-for-word because I wrote it down when she said it. I could have framed it on my wall. Up until this point, I couldn’t hold Asa, let alone tell him “I love you”, without stopping to cry. There’s a song we sing to Koa as he goes to sleep every night and I had tried singing it to Asa, knowing he would recognize it and maybe be comforted by it, and I just couldn’t get through it. The following day, with this in mind, I held Asa. I stopped and took a deep breath. I said to myself, “You have enough strength to get through this song, and that’s all you need”. I sang him the lullaby without having to stop. It felt like a huge victory.

I started to find more moments throughout my days. Moments to play with Koa, to connect with Ryan, to laugh with family. Moments to stop and feel the warmth of the sun, to smell the flowers in the trees on our driveway.

5) It took us a few days to even know what to pray for. One night I felt all this courage rise up within me. I started declaring life and life abundant. I declared that this baby was given to us by God. I had a rush of faith to pray that our baby would be okay, that he would live. I spoke these things over him with authority as his mother. Faith is a weird thing. As I prayed, I knew God was moving mountains. I knew it was powerful that I, as his mother, was declaring these things over him. I knew he was going to be okay. But as time went on, I found myself sometimes scared to believe these things. Was I setting myself up for more pain if God didn’t heal him? I wondered where the faith went that I had the night prior. Then I realized, it’s okay that faith is scary. When is faith ever not scary? Are we not believing for big enough things if our faith isn’t scary?

6) It was the most terrifying and vulnerable experience to choose to love our baby. Sounds weird, right? Something that should have come so naturally was something we had to press into, to fight for. I knew Asa deserved all the love in the world. But selfishly, opening my heart up to him was to willingly open my heart to pain. This actually applies to anything, right? Again, I quote C.S. Lewis.

“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”

I thank God that we chose to love Asa, in the midst of not knowing the good news that was to come. That we could muster it up within ourselves to love him, despite the pain it caused.

7) We quickly realized no one knows how to come alongside others who are suffering. We, too, wouldn’t know what to do had we not gone through this ourselves. Although condolences from friends and family were comforting, words always fell short. Ryan was able to identify it. He said he needed a ‘Job’ moment.

Three of Job’s friends heard of all the trouble that had fallen on him. Each traveled from his own country and went together to Job to keep him company and comfort him. When they first caught sight of him, they couldn’t believe what they saw—they hardly recognized him! They cried out in lament, ripped their robes, and dumped dirt on their heads as a sign of their grief. Then they sat with him on the ground. Seven days and nights they sat there without saying a word. They could see how rotten he felt, how deeply he was suffering.

Job  2:11-13

Job’s friends came around him and simply wept with him, that was all. I am forever thankful to Braelyn who came over in that first week and just cried with me, as did my sister-in-law, Sarah. They showed me I wasn’t alone in that pain. Braelyn, Krissy, and Sarah made their beds in hell with me. I am forever grateful.

I also found myself desperate to connect with anyone else who had experienced suffering, on any level. As I walked by strangers, I started wondering what they were going through. I thought about how no one would suspect what I was going through by just walking by me, so what was everyone else going through that I couldn’t see from the surface? I decided that suffering is suffering, no matter what the specific experience. It’s the darkness that binds us. Also, my capacity for grace grew infinitely. See someone have road rage? Rather than judging, I’d have sympathy. What pain had they been through or were they going through to make them so angry? A simple perspective shift. Obviously people are still responsible for their choices, but this is how I saw the world.

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There are other experiences from this time that I can remember, however most of it is just so depressing that I won’t bother to tell you about it. At the end of this first week of Asa’s life, the news regarding his condition slowly got better. As the blood panel came back in sections, we were told maybe he had a mosaic of Trisomy 18, meaning it wasn’t as severe. Then the rest of the results came back, showing that his chromosomes were completely normal. This meant NO TRISOMY 18! This meant WE GET TO KEEP OUR BABY! We still didn’t have answers, but hearing this news was indescribable. The geneticist said that ‘this was a miracle’, that she was as shocked as we were. She also said something that struck my heart considering the emotional roller coaster we had been through. She said, “He must really be loved”. And as the days went on, countless nurses and doctors told us how they, too, were shocked. Some even apologized saying, “This has been a humbling experience. Even when you think you’ve seen it all, you haven’t.” And honestly, I’m still shocked! The first time I researched Trisomy 18 was after we found out Asa didn’t have it. He shares so many physical similarities to Trisomy 18.

If you can recall the end of my birth story, how I wept aloud as I thanked God for delivering me from such pain so quickly, this is oddly exactly how the end of this week felt. Prior to the good news, I wondered when I’d feel joy again. I anticipated the painful healing to carry out the rest of my life. This news that Asa was going to live was God delivering me from immeasurable pain, quicker than I had ever dreamed. I was in awe.

While it feels strange to recall these moments with what our current situation looks like, I have to remind myself these experiences are still valid. This was our reality, even if for only a week. This trauma still deserves to be processed.