Jack

Sixteen years ago when I was pregnant with my son Jack I learned through an ultrasound that he was to be born with a cleft lip and possibly a cleft palate. My husband and I were initially overwhelmed by this news and by the thought of the added responsibility of raising a child with medical needs and who would look “different.” I had doubts that I would have the inner strength I thought was needed to handle the challenges I knew lay ahead. There were times when I felt sad and anxious thinking about how my son and our family would be stared at by other people. I struggled with thoughts that somehow I was to blame and that I somehow deserved this challenge. My worries, doubts and even my pain were certainly real but, in looking back now I also realize that some of them were grounded in simply not knowing a lot about what a cleft is and what it does and does not mean for a child’s future.

Soon after our ultrasound, a physician advised me to do some research on clefts and cleft care which led me to the Craniofacial Center at Children’s Hospital, where I had a prenatal visit. At the Craniofacial Center I was given resources that began to answer some of my many questions including pamphlets on possible feeding options and an estimated surgical timeline. I was also introduced to a young child who was born with a cleft lip and palate. Watching and interacting with this child and his family helped me understand that my baby was a child first.

Once Jack was born, it seemed there was a roller coaster of emotions while learning about my son’s care and establishing new hopes and dreams for his future as the vision of my family was reestablished. I often had to remind myself to be patient as I allowed myself to adjust and better cope with my sadness and anxiety until these emotions were not quite as profound.

Jack has had many surgeries. I am always amazed at how quickly he recovers. His young body heals very fast. Before a surgery I have learned to check in with the team Social Worker for support. It seems at this time I need to hear (again) that there are others who understand what we are going through. Receiving emotional support as well as practical suggestions on how to handle such things as school absences etc. is comforting for us.

Jack is an insightful and sensitive young man. He has had the opportunity, at a young age, to be involved with making choices about his healthcare and this experience has strengthened his character. Taking his life as a teen, son, student, athlete, sailor etc. into consideration when scheduling surgery, clinic visits, speech therapy, orthodontic appointments, endocrinologist appointments etc. has sometimes meant difficult but important choices have to be made. When I watch him confidently engage with others in social situations I can’t help but remember how far I have come since Jack was born. As the years go by, I realize many things -- I have the capacity to love my child unconditionally. I am more confident and I have developed the skills to be an effective support and advocate for my son.