A Surprise Down Syndrome Diagnosis, a Gift from God.

From the first kiss of air on your skin to the moment you reached my arms felt like a life time. I finally saw you outside of my body and all I could think was “That is my baby, that is my baby, that is MY BABY.” I was flooded with thoughts, emotions, and hormones like the sweetest roller coaster ride.

I grabbed your squishy, messy body with both hands and pulled you tight onto my chest. Captivated, speechless, so in love. Time stood still as I took in all of your beauty. I held you tight and stroked your head. We were in our own world, just you and me. Looking over your whole body I realized there were two more pairs of hands on you. Rubbing vigorously and suctioning with urgency.

I snapped back into reality to find your skin was purple and you weren’t crying. The nurses attempted to clear your airway on my chest but needed a more efficient tool as time was ticking. They lifted you away and my heart left with you.

I watched as the team of now 10+ people worked in the small room connected to mine.

Finally a scream and a nurse sweetly exclaimed, “There it is!” And smiled, “Happy birthday sweet girl.” A little more shuffling and assessing and then suddenly… stillness.

Minutes passed as the room filled with an awkward silence.

You were finally back in my arms as the head nurse quickly recapped to us what had happened. She finished her explanation of CPAP and nervously stalled as the other staff exited our room. She continued… “There’s one more thing, and I hate to be the one to tell you guys this…” I vaguely heard her continue talking as I focused my attention back to you. Your almond eyes looked straight into my soul. I knew exactly what the nurse was telling your daddy but I was back in You-And-Me land. The nurses were discussing potential health conditions and what the next few days would look like. What the rest of your life may look like. Likelihood of comorbidities and disabilities. But the only word I could muster to say was “perfect”.

“You are so perfect, Harvie. We love you so much. You are perfect.”

I felt as if you could understand their conversation and I was protecting you from hearing them. I held you close to my face and whispered 100 times, “You are perfect baby, we love you, you are so perfect…” A nurse came beside my bed and held my hand. “I am so sorry but it’s time for her to go.” Her words snapped me back to reality again. “Go where?” The head nurse repeated what she had been explaining: They were taking you to the NICU for further treatment. The nurse beside me wrapped her hands around your tiny body but I pulled you back to me, “You are so perfect my love. We want you. We love you. You are so perfect. You are so perfect.”

The nurse cried with me and again apologized. “I am so sorry but she really needs to go now, I will not leave her side.” And with that, I released my brand new baby into the care of strangers.

You were supposed to be safe and cuddly on my chest for the next several hours. You were supposed to sleep with mommy and daddy that night. You weren’t supposed to be whisked away with strangers. You weren’t “supposed” to have Down syndrome. But I’m learning that my “supposed to” is rarely God’s plan. He is doing a mighty work in me by being your mama and I am greatly humbled every day. Each day brings a new revelation of how His ways are always better than mine. God continues to push me away from my own ideas of what I think is best and towards gratitude for this place of discomfort. Harvie, you have brought us immense love and unfathomable joy. We deeply cherish the gift of being your parents; you will always be our perfect girl.

Inside the NICU, time is warped from the rest of reality. Minutes seem like hours and days feel like years. We were only there for 6 days but our world was completely rocked in that short amount of time. We desperately needed privacy and the comfort of our own home to process what our new lives would look like. But instead we found ourselves in a fog of doctors, wires, and monitor alarms. Although your health was of some concern, you were stable and in great care with the medical team. Our hearts and minds were focused on the smack-in-the-face curveball that was your surprise diagnosis of Down syndrome.

We deeply, deeply loved you from the moment that we met you. But we were mourning the loss of the child that we thought we were going to have. We were grieving the loss of a child that we met only in our minds. We faked smiles during the day and cried with each through the night. We took turns holding each other up and asking God why. We leaned on Jesus and each other and the growing ray of shining hope that was you.

It greatly pains me to admit that your first few days of life were filled with such sadness. This is not how I envisioned the first week as a mother. This is not the state I wanted to be in when you met me. But I know that those feelings were a necessary first step in moving forward. I know that I am not the only person to experience this and I want to be transparent in sharing the good and the bad. To experience feelings from complete opposite sides of the spectrum at once was a mental brawl. Thankfully, immense joy and gratitude to be your mama ultimately won the battle. In your short life so far, you have shown us what it means to completely trust the Lord and to seek His plan above all else. You bring laughter, delight, and inspiration to all you meet…we have truly hit the jackpot. We are the lucky ones. The Lucky Few.