The Magic After the Storm

On May 20, 2013 everything in my world was altered. Most people would say that about the birth of a child. Your world does change with every child. But sometimes, for some of us, our worlds are changed in ways that we never could have predicted.

On that day, I went into my bi-weekly OB appointment to check my fluid levels via ultrasound. For the previous two weeks, we had been checking my levels every few days. I was being monitored for low fluid levels after my daughter “failed” a NST (non stress test) that my doctor ordered after an abnormally high heart rate was detected. On that Monday, my fluid levels dropped dangerously low and an emergency c-section was scheduled that evening. I was 39 weeks along already so I was more excited than fearful to meet my newest daughter. These were final moments before our lives morphed into something we could have never imagined.

At 6:54 Finley Kathleen was born into this world. My heart burst when I heard her cry. My heart sank when I laid eyes on her. I cannot explain the feeling. My sixth sense was put on high alert. My mother’s intuition was pinging. “Why doesn’t she look like a newborn?” “She looks nothing like my other baby.” “Her cry sounds different.” I couldn’t bond right away. My heart felt achy. I felt sad when I held her in the hospital. I faked it. I pretended to have all the emotions you are supposed to have right after the birth of your baby. I kept pushing that feeling in my gut down that something wasn’t right. I just wanted to go home. I hoped that once the hormones subsided, my fears would too. Of course my baby was fine. And as she gets older she will look more and more like her sister. Right? You’ll see.

It didn’t take long for me to form a bond with Finley. A few days at home did the trick. When the bond became stronger, so did my fears. The weeks went on, and so did colic, feeding issues, hours of screaming, stiff limbs, choking and vomiting. The light was grey even though it was summer. I spent so many days praying, crying, panicking. I felt an exhaustion so heavy that it could have sunk me to the ocean floor. Life was not getting easier. Is this just postpartum depression?

I spent every doctor’s appointment asking questions, expressing my worries. I cried to family, friends, anyone who would listen that I felt something was wrong. I could see it. I could feel it. It was like being in one of those dreams that you are screaming for help but no one can hear you. No one heard me. Not until the day that I roared.

I took Finley into the doctor at 8 1/2 months and I refused to leave without orders for testing. Her pediatrician agreed to an MRI. We never made it that far. At nine months old, Finley was hospitalized for RSV. While she was in the hospital I asked every doctor and nurse help us find out what was wrong with our baby. That is when we got our referral to a geneticist who came to see her that same day. All it took was a little vial of blood for me to have the answers I was needing. Finley was diagnosed with Pitt Hopkins Syndrome, a neurologically devastating syndrome. It was a catastrophic diagnosis. The sky fell that day. I didn’t see the sun for months after that. Nothing can prepare you for the agony you feel when a doctor tells you that you will likely never hear your child speak, that she may never walk, that she will never lead a life all her own, that you will never lead a life all your own. And we grieved. We grieved the hopes and dreams for her future, for ours, for our other daughter and future children. We grieved the loss of her freedom, of our freedom. We grieved for her struggles, for the body of hers that was more like a prison. We grieved the isolation. We grieved the loss of friendships. We grieved it all. We still grieve it all. Grief never leaves. It mounts and it wanes.

Five years after her birth and four years after diagnosis, we still learn every single day how to keep going. Some days are still stormy of course but the sun shines far more now. She teaches me how to find the joy in a dainty giggle, bliss from a head laid gently on my shoulder, wonder from eyes that reach your soul. She teaches me about strength and courage. She has taught me how to believe in myself. She teaches others how to love more purely and without boundaries. She teaches us all so much more that we could ever teach her. She teaches us to be better people. She shows us that magic is real.