Celebrating Ethan: Days #341-347

As we approach Ethan's birthday, I decided to post a photo to Instagram each day along with a glimpse of the things that have been on my heart. Join us as we celebrate Ethan's first birthday with the hashtag #celebratingethan. 

Day # 341: The Countdown //
Sweet Ethan, it's hard to believe that you'd be turning 1 in only 25 days. The closer we get to your birthday, the stronger my longing for you grows. Yet, as heavy as my heart has been, I would do it all again. I think back on this horrible, wonderful, challenging, amazing year, I wouldn't trade it for the world. You have brought so much richness and growth into our lives. Your tiny little hands have left a huge imprint on our hearts. You are so very loved.

Day # 342: The Beginning // 
Ethan was a surprise. A huge, wonderful, unexpected surprise. He was such a surprise that I got a little mad at Chris when he suggested that I take a pregnancy test, after my "flu" just wouldn't go away. "I'm NOT pregnant," I insisted, with an eye roll. "We KNOW I can't be pregnant." Nearly three years of blood tests, doctors appointments, and unexplained infertility had convinced me that it was impossible. But I took the test to prove that I wasn't pregnant.

I was wrong. 

I cherished each day of my pregnancy with Ethan. We had wanted him so badly for so long. I knew that each day I had him in my womb was a day that I was never promised. I felt the magnitude of the years of longing, and I felt the weight of my sisters who still faced infertility. I knew this child wasn't promised. And I savored every queasy morning, every ache, every extra pound, every craving, and every tiny baby flutter (which soon grew into enthusiastic kicks). We're still so thankful for that time. It was a longing that we knew may never be fulfilled, and we do not take one day for granted.

Day #343: Soaking it in// 
There is another side of loss that I didn't expect. Sure, there is the crushing side. The obvious side that knocks the wind out of you and sends you crashing to the ground. The side that feels so heavy, so confusing, so isolating. 

But then there is the other side. The side filled with such beauty. Such light. Such hope. 
It's as if the dirty glasses that you once viewed the world through have been removed, and all of the colors are suddenly more vivid. The dark colors, the light colors, the suffering of the world, the beauty of creation--they all are suddenly so clear, so intense, so vivid. 
When you've seen the storm, the rainbow is that much brighter. When you've shivered in the cold, the hearth is that much more comforting. After a long night, the sunrise is that much more breathtaking. 

As we watched our child slip into eternity, I was faced with the reality of our mortality. In this past year, I have spent so much time thinking about death, about heaven, about eternity, about the purpose of it all. Ive wrestled and searched and have begun to come to grips with the reality of my own mortality, and the reality of heaven and hell--we are all dying and we don't know how much more time we will have. Each and every day is a gift. Each and every day is an opportunity to have an impact. Each and every day is one step closer to eternity. Each and every day, our purpose is to share Jesus and live for him. 
It wasn't until I saw the darkness that I realized how incredible the light is. It wasn't until I suffered that I realized just how broken the world is, yet how incredible the promise we have in Christ is. It was there that my heart gained a new understanding for the beauty of Christ's sacrifice, the overwhelming need for the gospel, and the beauty of the promise of His return. 

I'm not saying that loss isn't hard. Oh my--it's the hardest, most horrible form of suffering I've ever faced and I wouldn't wish it on anyone. But there is a beauty that lives side by side with pain. A newfound appreciation for what is good, and true, and lovely. Brighter colors. More joy. Renewed hope. 

Day # 344: One in a Million// 
It wasn't until after Ethan was born that we learned that he had a rare chromosomal condition called Trisomy 9 (Full). The condition is extremely rare. One website I found on the topic of Mosaic Trisomy 9 and Trisomy 9p even said, "Full Trisomy 9 does not exist." Well let me tell you, I have an official report from Ethan's doctor stating the diagnosis- FULL Trisomy 9.

A little overview of what we learned:

1. Full Trisomy 9 is always fatal. 
2. Babies will Full Trisomy 9 are almost always miscarried in the first trimester.
3. Trisomy 9 is so rare that the California Prenatal Screen Program and the NIPT blood tests do not even screen for it.
4. The doctor who delivered Ethan had never seen a baby with Full Trisomy 9...before Ethan that is.
5. Ethan's condition was "randomly occurring" and was not genetically passed down.

As the specialist (who also seemed surprised that our son had Full Tri 9) began to explain the process of conception and the formation of the 23 chromosome pairs, Chris and I were both blown away by the complexity of life. If one tiny thing goes wrong, we die. Every single tiny cell must properly split, attach, form, etc. in order for a healthy human being to be produced. If you ask me, it seems as if there are more things that could go wrong than could go right. Yet somehow, hundreds of babies are born every day.

The second thing that I realized is that Ethan was a one-in-a-million miracle. The rarity of Ethan's condition was confirmed over and over. Doctors seemed so surprised that Ethan, a baby with Full Trisomy 9, made it to the third trimester and was born live. 

There are many more answered prayers, than unanswered ones. 
We were told, "This was a baby that probably should've been miscarried"..but he didn't. "These babies aren't born alive"...but he was. 

We begged and pleaded with God for a child, and he answered. 

We prayed from day one that God would use Ethan's life to bring people to know Jesus, and he answered. 

We prayed that God would protect Ethan in the womb, and he answered. 

We prayed that God would give me a smooth delivery, and he did. 

We prayed that God would give us the opportunity to meet our son, and he did. Not only that, but he gave us 93 minutes with him. With a one-in-a-million baby that "should have" naturally miscarried. 

We prayed that God would allow Ethan to come home with us, and he said no. One "no" in a sea of yeses. One "no", that provided Ethan with much more than we could have ever offered him. 

Ethan will not come to us, but we will one day go to him. 
God knit Ethan perfectly together for a purpose. His eyes saw him; every one of those 93 minutes were written in his book. 

Day #345: The Name// 
Chris and I had two baby names that we loved. Ironically, both were girl names. I jokingly say that I knew we were going to have a boy because girl names were the only names that we could both agree on.

One evening, Chris and I were driving home after date night in Laguna Beach. We had been reading from lists of baby names all week, trying to find one that felt right. "Ethan," Chris said. "Ethan...Daniel...Ethan Daniel." I liked it. I really liked it.

We decided to wait before deciding on an official name, but this one was in the running. 
A week later we found out that sweet baby had serious health concerns. As I prayed, I kept thinking of our child as "Ethan".

Each time I prayed, I almost called him Ethan. I stopped myself each time because we had not named him yet. I shared this with Chris, who said that he felt the same way. Ethan was the name that we both continually thought of as we referred to our son. We decided to wait to make a final decision. In my mind, I knew. He was going to be Ethan.

One night, Chris called our pastor to give him an update and to ask him to pray for us. Our pastor prayed for us and said that he would add our request to the church prayer list. He asked for his name.

Chris and I both knew. "His name is Ethan."

Day #336: Ethan's Room // 
There was so much joy in preparing for Ethan's arrival. Painting the walls, receiving the package that held his crib, making decorations for his room, assembling furniture and putting everything in its proper place. We knew that there was a possibility that Ethan may not come home to this room, but we had hope that he would. No one ever expects an empty crib. No one expects to make returns. 

Almost a year later, the room is still "Ethan's room". The decorations have been placed nearly into a box of treasures, along with the clothes that I just couldn't bear to part with. Now, the room only holds a dresser, a crib, and the most comfortable glider I've ever sat in. Sometimes I go inside and rock in the glider. It once brought me such heartache, but now, most days, it feels peaceful to go there. In reality, Ethan is in a "room" beyond my imagination. But here on earth, this room carries so many memories of him.

Day #347: A father's love // 

He gladly came to every doctor appointment. He bought books and read stories to Ethan before we went to bed. He felt the first kicks. He talked to him every day, while Ethan kicked in gleeful response.

He was the first one to hold him. To kiss him. To hold his tiny hand while the doctors worked frantically to stabilize him. To root for him and cheer for him and tell him he loved him. 

In a culture that often forgets the fathers, I see him. He loves Ethan just as much as I do. He has been my best friend through the good, the bad, and the ugly. And I am so thankful.