Let Your Scar Shine

Alexis GiannattasioCommunity Stories, Family Stories, Teen

Aliah is your typical 13 year old girl who enjoys music, stories, time with her friends, participating in church life…and writing!

We first were introduced to Aliah as a newborn with a bilateral cleft lip and palate. She had a few other ocular findings of bilateral colobomata and mild telacanthus; however, it was her bright blue eyes which would captivate the casual observer. She marshalled through her primary surgeries as most infants, but due to a very wide palate with little native tissue, endured a staged approach. She had a procedure to bring her very protrusive premaxilla under her lip and to narrow a broad nasal tip. Orthodontics and bone graft procedures were to follow.

Aliah and her parents always made their appointments and cleft team visits, and seemed to particularly connect to other parents and children going through the same procedures or traversing the challenging paths many of these children endure. Aliah appeared, especially when older, to be very observant of the clinic-goings-on, would ask good questions, and generally wanted to understand her personal experience in light of other children–the similarities, the differences, navigating school and holidays and the impact of our proposed management. Aliah was always polite, understanding and compliant and, looking back, we can see how she was “taking notes” of her personal and the collective experiences of being part of a “team”.

From her personal story another kind of story evolved and ended up in a short book- “Let Your Scar Shine”, which tells about Marshmallow the teddy bear and her upcoming surgery. It’s a delightfully pleasant and well-illustrated tale of preparation and encouragement for any child undergoing surgery…a child’s gift of cumulative hopes, concerns, dreams and expectation to other children… “with love, Aliah”.

We give this little book out to all of our children undergoing surgery or those with a sometimes difficult recovery process. It seems to cheer, encourage and help the children along.