We were huddled around her incubator four days after Callie’s open-heart surgery. It had only been seven days since her birth. I stared at the three-inch scar that covered her tiny little chest and tried to keep my worry in check but it was extremely hard. Callie was hooked to a million tubes and wires and had a respirator to help her breathe. She also had a feeding tube in her nose that went down her throat to help her eat. Each breath was a struggle for her. She didn’t cry which initially worried us until the nurses told us it probably took too much energy. With her reddish blonde hair and bright blue eyes, she was the most beautiful thing we had ever seen. We were told we were going to meet with a specialist about her leg that day because they had noticed that her left leg was markedly shorter than her right.
To say my husband and I we weren’t prepared for what was to come is an understatement. After examining our beautiful baby girl, the doctor told us that she probably would not make it through the surgery much less survive the following weeks. To us, Callie was our miracle and we were absolutely blindsided at the news we might have to tell her goodbye already.
When the doctors presumed her ability to survive and thrive was likely impossible, she surprised us all by conquering every perceived limit. In fact, not only did Callie survive her heart surgery, she would survive her second one too. Our daughter was clearly a fighter. After spending three stressful months in the NICU, Callie was finally well enough to go home. We didn’t know that she would end up needing over eight surgeries in her early years but we would follow her lead and find the inner strength to handle whatever came with hope and perseverance.
Nothing prepares you for something like this. We read all the baby books and went to all the child life classes prior to her birth—but there was nothing in any of them that talked about a child born with a disability or how to handle it. There was definitely a period of grief that we experienced—for the life we thought we should have had. We took time to mourn that “life” but then rebounded and focused on blooming in the garden that we were planted in. My husband and I leaned on each other—being strong for one another while simultaneously being strong for Callie. We made a decision….that we would do everything we could to make the best possible life for her. Each and every decision we made had her best interest at heart.
One of the things we soon learned after arriving home was that Callie was missing one of her bones in her lower leg and that we would have to make the impossible choice to amputate her leg at eighteen months. As a mother, this was gut-wrenching. I carried her. I should have been able to protect her from this. Was it my fault? How do I make this type of decision? Particularly for my own child. After many doctor’s appointments and soul searching, we made the decision that would give her the best shot at a normal life. It was our hope that she would grow up with her prosthetic and that would be her “normal.” She wouldn’t know any different and we could teach her that even though she was a little different from others, she still could do anything she set her mind to.
To our relief Callie learned to walk with her prosthetic leg in only two days despite the doctors telling us it would take her a few weeks! Not only would Callie learn to walk, she would eventually run, swim, and ride her horse, Jazzy. She has even recently joined the Runway of Dreams (adaptive clothing foundation) team and is modeling in hopes to change the face of beauty….one step at a time.
Most importantly, despite all of the challenges and obstacles our family has faced, I cannot help but smile as we watch our daughter grow with a quiet spirit and beautiful smile that lights up the lives of people that know her. Despite all odds, Callie’s here and flourishing and I am so proud to be her mama.