Ethan’s Story
“Our sweet, Ethan. A person who means so much, but a person we never met.”
As I’ve mentioned, when you look at our family pictures, you may not know someone is missing. However when we look at it, while we are filled with joy and blessings in our two boys, one of our dear sons is not there. His name is Ethan. People have heard bits and pieces of his story but I’ve never really shared all. My hope in sharing this, is not for the “I’m so sorry”‘s, the pitied look or anything else. My hope is that maybe somewhere, someone can read this, can find hope in it and can trust that God has a plan.
An Unexpected Surprise
AP and I married in September of 2013 and while we always knew we wanted children, we planned on waiting at least a year. We moved into our home we would start our family in, in April 2014 and were looking forward to a family trip to Napa in August. We decided that after that trip we would start trying for our family. God had other plans.
On the third day in Napa I frantically started counting the calendar. One… two… three. Three days late. No, no way… one… two… three. LATE! While in Napa, seriously. I told Adam I thought that I might be pregnant, but we weren’t sure how we could get a test, we were staying in the most darling house in St. Helena with his parents, sister and brother-in-law. FULL HOUSE but we managed to sneak away, we told them we needed to go grab something from the store and took the mile walk down… then back.
I waited until the next morning to test and before I could even set the test down, two very bright lines showed up. I remember bringing it out to Adam, shaking and feeling a mix of both immense joy, but also a lot of nervousness, like most first time parents-to-be. Also, did I mention we were in Napa?? With winery tours scheduled back-to-back, how were we going to hide this?? (we did — Adam drank for two… boy did he really drink for two). We ended up hiding it that day and told everyone the next day. Everyone was so excited!
Fast forward to the pregnancy. I was lucky, I didn’t have a ton of morning sickness, just a little queasiness here and there. I probably had more food aversions than anything (specifically to chicken). We were also to the point where we were comfortable sharing our news with the world. On our first wedding anniversary, we shared the news that we were going to become parents, we were so overjoyed. We were due May 9th.
Mom-To-Be Nerves
We didn’t know Ethan was a he at the time, but our little bean was quite the mover. We looked forward to every appointment and we laughed every time at his constant flips, twirls, waves and kicks. However, looking back, I felt distanced. I felt like something was going to happen but I chopped it up to mom-to-be nerves. I have a lot of anxiety anyway, so of course, this was just me being silly. Now, looking back, I know what mom instincts are and how powerful those little intuitions can be.
All of our appointments were routine… until one day, they weren’t. At our 11 week appointment, the ultrasound tech was having trouble getting the Nuchal Translucency test done. It really looked like our little bean was just turned away and our tech said to come back in two weeks. He would be a little bigger, he’d have less room to wiggle away, no worries, off we went.
The Day Our World Changed
On November 4, 2014, our world changed. Adam headed off for Chicago for a work trip and I invited my mom along to our follow-up appointment. I was so excited for her to get to see him! We grabbed lunch beforehand, just some mom and daughter time. I remember chatting with her, the tech, laughing and watching him do his little dance. Then, the tech became quiet, said she had what she needed and told us to go wait for the doctor.
Shortly thereafter, we were called back to another room. Our doctor walked in, her usual smiley self with her lips taut. “Who is this?”… uhm my mom. “Where is your husband?”… out of town for work. “Your baby has anencephaly.” Anencephaly… I knew that, my head searched it and BAM, I remembered. I’d been following another families story about a baby with anencephaly. “Do you know what that means?”. Yes, yes I knew exactly what it meant. Tears streamed, I called AP once… twice. He finally answered and I couldn’t get the words out. The doctor told him “your baby has anencephaly, you need to come home”. He booked it on the next plane home. I don’t remember much of the car ride back home, nor the airport to pick him up. That day was a complete blur.
*Note: If you’re a physician and have to deliver awful, awful news. A little compassion goes a long way.
A Life-Limiting Diagnosis
The following day we had an appointment with maternal-fetal medicine at the local hospital. An ultrasound was performed and the doctor came in after to talk to us. A lot of what she said is a blur but what I will remember most was how much she cared. She came in and said “I’m so, so sorry.” She shook her head, he had acrania (not anencephaly as our first doctor diagnosed). I lost it. Surely this was a terrible dream, WAKE UP! She kindly explained everything again, asked if there was anything she could do. If anyone here actually knows me, you’ll know I want all the facts. It’s just how I process things. She showed us all of our perfect baby, showed what was wrong and we asked if she could look to see what our baby was. Our sweet babe, was in fact, a he.
After the ultrasound, we met with a genetic counselor and called our families. I can’t describe but I never, ever want to see my husband that upset again. What amazes me is how in one moment, I can be a puddle on the floor, with him as my rock but when he needs me, I can be that rock for him. Genetics came back normal and also confirmed he was a little boy.
Adam picked his name, Ethan, which is Hebrew for “strong,” “safe,” “firm.”
We had choices, terrible, terrible choices to make. I wouldn’t wish any of this on my worst enemy, there is no name for a parent who has lost a child. Ethan gained his angel wings on November 13, 2014. Six years ago, tomorrow. His ashes are spread near our home, we drive by them every day.
As time goes on, wounds become less sharp, but those wounds never heal. I think about Ethan daily, just like I do with Hudson and Holden. He’s a part of me and no matter how much time goes by, how many more children we may or may not have, he has a place in my heart. I long to meet him, I long to see him, whole, healthy and complete. Until we meet again, I feel him and see him in our boys, in our pictures and know he’s smiling down on us.
Someday, our family will be whole, reunited in Heaven, but until then, Ethan, please keep sending us your sweet reminders.
—Chels