Before my son Hartley was born, I had imagined a life for him. It wasn’t easy for us to conceive him and he was all that I ever wanted in life, all that I had ever hoped for. I was going to be a mother. I felt like all of my dreams were coming true. I loved him fiercely without even having met him yet.
When Hartley was born he was perfect. He was chubby, adorable and calm. He seemed wise beyond his years and so alert. I couldn’t even believe how amazing it felt to have him in my arms, a dream come to fruition.
The days following his birth are a blurry, hazy mess filled with sleepless, painful nights spent on the floor in sleeping bags in a supply room at the hospital. Days filled with despair and fear that the very thing I had hoped and waited so long for was going to be gone. I had never felt so defeated; I had never been so heartbroken in all of my life. My heart ached and I went into autopilot as we heard treatment options and waited hours on end in surgical waiting rooms.
It had been ten days since his birth—ten days since we had been able to hold him and snuggle him—but he was finally strong enough to cuddle. When they placed him in my arms for the first time since his diagnosis and surgery, a wave rushed over me. I suddenly felt calm and hopeful again. From that moment on I decided that we were going to fight this, that intestinal failure would not define my son and my family, and that Hartley was going to live a long and happy life.
We made a decision to choose hope. Without hope we had nothing.
The last five years have not been easy for Hartley. He has had multiple surgeries, daily procedures and has been sick more days than not. He is happy, smart, hilarious and kind. He is wise beyond his years—something we knew from the moment we met him.
He reminds me daily to be hopeful. This past year has been especially difficult for him and for all of us, but we remain strong, happy and hopeful as a family. While we have watched so many other families in our situation not have a happy ending despite all hope, we feel blessed because Hartley is doing well and we are living each day to the fullest, making memories and loving with our whole hearts.