Baby James

February 12th, 2018, we went into our 20 week ultrasound ready to find out the gender of our second baby! This baby was a surprise and we couldn't believe we were pregnant again. Evy, our first, was only 12 months old and we were halfway through a pregnancy! It was such a shock but also such a gift.  We were excited to have siblings that would be so close together! However, after our 20 week scan, we learned that having two children close together wouldn't be our reality. Instead, we were told that our baby had signs of severe complications and we needed to be prepared for him to not survive much longer. We did testing and found that our sweet baby boy had Down Syndrome and his complications were stemming from a common heart issue caused by having that special extra chromosome. 

We were asked to go to a "genetic counseling" appointment. Looking back, we probably would have declined since the main goal of that conversation was to talk through options of abortion and how I could get one legally in North Carolina if I couldn't decide before 21 weeks. I remember just being in shock that I was in a situation like this. I was scared to hope for sweet baby James to survive because his life would be marked with devastating complications due to the severity of his condition. It was also so hard to accept that he was in the process of dying when I had just spent 20 weeks thinking my baby was in the process of growing and developing. 

We named him "James" and we started celebrating his life despite his prognosis. We knew any day could be our last with him and so we chose to continue to live and have experiences together as a family. One trip I remember so vividly was a quick trip to NYC. Michael and I headed up there for a show and dinner and we stayed overnight in the city. I remember trying to get ready to leave the hotel but I couldn't get out of the bed. I just cried and cried and there was nothing that could be done. There wasn't a solution to this. It was just a devastating reality. Wait staff would say "congrats" when they seated us at a table. People would pass us on the streets and smile almost to say "aw, look at that young couple having a baby"... and I would think "If you only knew..."

It wasn't the way it was "supposed" to be. It was like I was a walking reality of the brokenness of the world. This is NOT heaven, this is not paradise, this is not what people would hope or dream about... this was misery. It was heartbreaking to tell people my reality after they would say "Oh congratulations!" or "Evy you are going to be a big sister!". I would say "Sadly, this baby is very sick and isn't expected to survive" and people would be so embarrassed that they would start apologizing profusely and then I would have to "comfort" them and say "oh it's ok, really, you didn't know"... When I say it was miserable, it was truly miserable. I wanted to hide at home... but I also couldn't hide at home because I started to feel like I was going crazy! 

We basically shut down our business for six months and focused all of our time on surviving this hard season of life. After two weeks has passed and our sweet Baby James showed no signs of slowing down like the doctors assumed he would, we started realizing that we had a choice. We could either be miserable for one, two, even three more months or we could choose to celebrate this life and this child despite our pain and grief. I began sharing more about our journey and establishing rhythms that helped me make it through each day. I asked for a sleeping pill that normally wouldn't be given to pregnant women but because of my condition, the doctor allowed it. This allowed me to actually rest at night and I was a new person each morning. I bought an at-home doppler and let Evy listen to her brother's heartbeat each day. We went on walks and out to eat with my sister and brother-in-law each week and always tried a new restaurants each time. I even decided to lead worship at our church on Easter Sunday and I still don't know how I did that. I remember singing In Christ Alone and feeling like it was the first time I had ever sung it. Everything was different now. My faith, my trust in heaven, my understanding of death and the brokenness of the world, my view of my purpose in life and my story.... James changed everything. 

You see, when you are carrying a dying baby, I feel like you have a choice to either hate God, choose to believe that there is no God or realize that the only thing in life that makes sense is the fact that there is a loving God that isn't just haphazardly throwing around the plan of my life. I believed the third option. I knew God was real and I also know knew that He wasn’t a hateful God… so why me? Why my baby? Why allow him to hang on for so long? The more that I wrestled with those questions, the more I saw glimpses into the impact of my son’s story….. people who never even named the babies they lost 20, 30, 40 years ago were sharing that they decided to accept that they could allow themselves to love and grief their baby that never came home… photographers that we were teaching online were rethinking their faith as they watched our journey unfold… people who had lost spouses and couldn’t see light in their darkness were given glimpses of hope as we celebrated the little bit of life we had with our child… just amazing. Story after story, letter after letter, email after email…. They just started to flood in and they still haven’t stopped.

God had a purpose for our baby. I didn’t start a foundation or charity or awareness group. I didn’t raise money for Down syndrome research. I didn’t donate to our hospital in memory of our child…. I just simply celebrated a life that the world would normally overlook. I spoke about pain that most people run from. I leaned into the hurt of loving a dying child when it seemed like it would be easier to try to act like this wasn’t happening to us. I just simply let myself love a baby that I would never get to take home because if his life was created, it means his life was purposeful.  No one could ever convince me otherwise. I was changed forever because I carried my sick baby boy until 31 weeks.

I’m four and a half years removed from the day we met and said goodbye to our sweet boy. There were so many miracles on his birthday and so much joy despite the pain. Heaven felt close to us in that hospital room. We got to see him peacefully pass away just moments after he was born and our families got to hold him and say hello and goodbye. Because we loved him so deeply while he was with us, we felt emotionally prepared to let him go. We had accepted it and we were anticipating it for so long that the day it finally happened, it felt like a relief in the midst of the sadness. Because we loved him instead of avoiding the pain, it actually made the pain more bearable. I know that doesn’t make sense, but it was almost as if we had spent three months grieving him and loving him and it allowed us to celebrate who he was once we finally got to meet him. So many parents live in the denial of what their reality is because it’s too painful to face. It’s too hard to love the baby you’re going to lose because why do that to your heart? But then when you actually see your baby and hold him or her, you can’t help but be flooded with all of the emotions that you have bottled up and suppressed for days, months or weeks. It’s hard to process any part of losing a child but in our experience, loving Baby James allowed us to survive losing him in a healthy way.

So how do you love a baby you’re going to lose? I had to cling to the promise from scripture that our trials are a gift… they aren’t for nothing… they aren’t without purpose or meaning… and if this was true, then this baby was a part of my story and I had a choice in how I showed up. Our life coach encouraged us to consider making a vision for how we wanted to survive this season. I knew that I didn’t want to feel like I had lost half a year of my life. I didn’t want to hide from my reality and then face it head on the day he was gone. Some parents have no other choice. They lose their child in an instant and have no warning. I felt like my 20 week ultrasound was a gift because even though my grief was stretched out, I had more of an opportunity to choose how I wanted to live through this season. Looking back, I feel like I had more hard days than good days. I was really struggling at the very end and my mental health wasn’t healthy at all. I was at the end of my rope and even in the midst of tears and feeling completely defeated, the Lord still gave James such a beautiful birthday. I was told once that there would come a time when I would look back on this season of my life with fond memories and I couldn’t believe that then. I thought it almost seemed cruel to say such a thing…. But that momma was right. I look back at my season with my first son and while I miss him, I still cherish him. I can remember how his skin felt, his squished little nose, his tiny bit of red hair, his short little arms, etc. I miss him but I know he is whole and perfect and healed. He’s in the paradise we long for and I can’t wait to see him again one day.

-Katelyn James

You can read more about baby James and his life over on Katelyn’s blog!