I remember the day I told Brett, my husband of seven years, that I was pregnant with our first child.  Brett and I had been together since 2006 in high school and had built a fantastic life together over the years.  We both had great careers (Brett a teacher and I a nurse), we had money saved up, a home with space to grow into and we were ready to start filling it with children.  It was December 28, 2017 and the warm sun had given us a break from the Louisiana winter.  I couldn’t stop smiling as I spilled the beans before I could even use the Arsenal onesie I bought to tell him.  I was met with a hug along with the biggest, most genuine smile I’ve ever seen on his face.

Fast forward to of our gender scan, Brett playfully opened the envelope given to us by our doctor… BOY… and I immediately started crying.  Through the years, we always wanted to have both a girl and boy but I secretly wished we would have our boy first.  We named our son James Martin, tying in both family’s names.  We were so happy that I can still feel the soreness in my face from smiling and laughing that day.  We spent that weekend, Easter weekend, celebrating our gender reveal with friends, family, and a feeling of happiness that was almost tangible.

The Monday after Easter we had an appointment with a specialist to check James’ growth to make sure my small frame and running hobby didn’t affect him.  As I lay in the chair, the ultrasound gliding over my jellied stomach, we looked at our baby boy on the screen in amazement.  Their advanced machine detailed James in ways I didn’t know was possible and he was absolutely beautiful.  The tech pointed out everything she could to us as she moved the wand about but she fell silent when I asked about his kidneys.  My amniotic fluid levels, which were a little on the low side during our gender scan the week before, had dropped well below normal despite my efforts to hydrate over the weekend.  She exited and as we waited for the doctor I burst into tears; something was wrong, I could feel it.

The doctor came in, sat down, and scanned me himself.  The conversation that followed was information overload. I could barely hear the doctor speak over my own heartbeat which was deafening in my ears. As I took the information in, I had tunnel vision, staring at the screen that showed our baby, our James.  I remember thinking how perfect he was even though the doctor was telling us the opposite.

During development, James’ kidneys had failed to develop, in turn making numerous other organ systems fail to form properly.  My mind immediately went into medical caregiver mode thinking of possible options.  I didn’t fully understand the gravity of the situation, until I caught the word “termination” come from the doctor’s mouth.  It’s a condition called bilateral renal agenesis, a form of Potter’s Syndrome, and it is considered a “fatal fetal diagnosis.”  If James made it through pregnancy and birth, his time would be short.  We’d had seventeen weeks of a “traditional pregnancy” and now everything was upside down.

Our blissful celebration and our naivety had been ripped away from us in a way that nobody can prepare for.  That night, I laid in a puddle of hopelessness on our cold bathroom floor and sobbed in a way that was foreign to me.  My mind and heart were shattered to a million pieces. With every ounce of my soul, I pleaded with God to save James, to take me instead, to somehow give him one of my kidneys; I was desperate for a miracle.  Anything to save our baby boy, and it was then that I truly understood that a mother’s love has no boundaries.  I was ready and willing, begging for it in fact, to give up my life to save my son.

I say we chose to carry James, but there was never another option for us. With assurance that he wouldn’t suffer, we wanted James for as long as God would allow us to have him.  Brett and I wallowed in our self-pity for about a week before we realized that we could not spend the remainder of our time with James hiding from the world.  James deserved what all children deserve, the best life and best love you can give them.  We didn’t know how long we would have with our son so we started planning adventures for our family.  We wanted as many memories as we could have, knowing that a person’s lifespan doesn’t equal it’s worth.

We skateboarded, climbed trees, flew a kite and blew bubbles.  We kayaked and swam.  We climbed to rooftops for city-views. We went to the zoo, rode a carousel and a Ferris wheel.  We ate ice cream, a Happy Meal, and drank Mt. Dew (Brett’s favorite drink).  We went fishing, played in sunflower fields, watched meteor showers, and danced in the summer rains. We took trips to Chicago to see the Cubs play at Wrigley Field and to the Arkansas mountains to relax in the wilderness.  We listened to a lot of music, went to a concert, and read The Lion, The Witch, and The Wardrobe almost every night.  We put a speaker on my stomach so James could listen along to Arsenal and World Cup matches as well as some of our favorite movies.  The time that wasn’t taken up by specific adventures was spent together in each other’s arms, soaking in my growing bump and feeling James wiggle.

There was talk of induction for safety reasons for both James and I, but before we had to brave such a task, James chose his own birthday-August 2, 2018.  I had been having contractions off and on and at our weekly appointment they told us it was time.  Our medical team assembled and family gathered by our side.  A strange calm came over me, I wasn’t ready to say goodbye but I wanted to meet my son, tell him I loved him and tell him how proud of him we were. 

Labor was quick, and they laid him on my stomach but he was so still, we thought he hadn’t made it and my heart sank.  They brought him to my chest, then with one little frumpled brow he let us know that he had arrived!  Our strong boy had made it through labor to meet his mom and dad.  Suddenly, all of the uncertainty and anguish was swept away.  We were flooded with love, joy, and utter bewilderment.  James was more handsome than my mind had allowed me to imagine; he had his dads eyes, lips, and feet and he had my nose and butt-chin.  He was so tiny and so, so perfect.  We spent time with our boy, showering him with love and kisses, telling him how proud we were, how much he was loved and how handsome he was, and he made sure that we knew he didn’t like his hair being messed with.  He was prayed over and baptized in Brett’s arms surrounded by his family.  He only knew a life of love here on Earth and then, after 62 amazing minutes, he peacefully went to Heaven in our arms. 

The time since losing James has been filled with both gratefulness and immense emptiness.  I have never felt complete since our loss and I never will.  I still ache deep in my chest when I see a woman with a little boy. These waves of grief are always present, lapping at my feet until something drags me out to sea, threatening to drown me.  I’m learning to accept these feelings instead of fighting them; my grief and I are slowly gaining an understanding of each other.  During the toughest moments, I try to shift my focus to the time we were granted with James instead of the things we will not experience because of his death.  He taught us to live in every minute and it is a blessing to walk through life this way: the air smells sweeter, the food tastes better, the love is more intense, the smiles are genuine, the tears are hotter and the loss is so very deep.  My motherhood may be difficult to navigate, but I believe gratitude will be my strength and James will be my compass. 

I remember when we first got the news of James’ diagnosis I so desperately hoped and prayed for a miracle and spent time being angry because we didn’t get it.  Looking back, James making it through a dangerous pregnancy, surviving birth, and spending 62 wonderful minutes with us here on Earth is a miracle.  James being able to be an organ donor, selflessly donating multiple organs to research-gifts that have and will continue to positively impact the world is a miracle.  James teaching Brett and I so much about life, love, parenthood, and appreciating every aspect of life is a miracle.  I now know that James is, and always has been, the miracle I didn’t know I was praying for.  From the moment I was pregnant, to the moment of birth, to the moment in Heaven when I hold him in my arms again, James is our miracle.

Stephenie x

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