Izzi’s Journey to the Stage

ACPA MekanicACPA Family Services, Awareness, Community Stories, Fundraising

“My daughter is a stunningly beautiful dancer. At a recent dance recital, I watched in awe as her long limbs stretched and danced with such skill and grace across the stage. 14 years ago, I gazed down at this beautiful child as a newborn who had a unilateral complete cleft lip and palate on her left side. Just as I was feeling overwhelmed by what had to happen next, she started stroking my arm with her hand as if to say, ‘It’s all going to be ok, Mommy.’ 14 years and many surgeries later: ear tubes, plastic surgery to close the lip and palate, with orthodontic work thrown in – and it is all just a part of our family story. I don’t see a cleft or a scar when I look at my daughter but the whole person that she is: an amazing teenager whom I wish would be a bit less moody, but what parent of a teenager doesn’t wish that?! At any given moment, she is an artist, a dancer, a writer, a singer, a Greek Mythology enthusiast…

“My child, who was born with a cleft lip and palate, is strong, clever, loving, inventive, and so much more than a cleft that is now merely a scar. That scar that ultimately helps my child eat, drink, speak, and sing shows the skill and care of countless people along our journey. The journey isn’t always easy, but what parent’s is? I remember the moment when I realized I wasn’t going to be the parent who constantly heard, ‘Oh, what a beautiful baby.’ It was in the hospital NICU when a woman who was cleaning walked through, stopped at every baby in there – tiny twins, premature babies – until she stopped to look at Izzi in my arms, then moved on without saying a word…

“The part of me that was dismayed to realize I wasn’t going to hear ‘What a beautiful baby’ from strangers was quickly replaced with all the moments that followed. Baby Izzi eating like a champion after the adults around her finally figured out how to put the specialized baby bottle together. Izzi grabbing a book I was reading as I held her on my lap so she wouldn’t grab all the cords attached to her after surgery number three and throwing that book on the floor with a disgruntled look at me as if to say, ‘If I’m going to be uncomfortable so are you!’ Izzi dancing everywhere we go because that is my daughter. I remember how difficult it was to let go as she was taken into her first surgery and how grateful I was for the kindness of the surgical team, who continued with her into the surgery room. I remember my gratitude towards Izzi’s wonderful Orthodontist on her Team, who created a special retainer with a couple of false teeth that blended in with her own and gave Izzi back her smile in middle school after I told her that Izzi had stopped smiling for pictures in 5th grade. I have been and continue to be grateful for every doctor, nurse, and staff member on the Cleft Lip and Palate Teams that have helped us and continue to help us each year to keep track of what needs to happen when and to help catch any surprises we would not know to look for as parents. It is not always easy, but Izzi is worth it!

“We’ve never been alone. Team medical care is a revelation! While it does make for a long day once a year at first, it is a day to monitor care all at the same visit, a chance for us to see and bond with other children and parents going through similar things, and a day to let my daughter pick where we eat out for lunch!

“Most of the time, people don’t even notice anything different about Izzi now, but Izzi has endured stares, fluid in her ears, kids asking to see inside her mouth, and people making hurtful comments – sometimes intentionally but often out of curiosity. It is a part of the fabric and thread that has created a resilient, caring person who makes a great friend and a wonderful family member. She is so much more than a diagnosis and series of scars. If I could say anything to families of new babies, I would take a cue from my own child as a baby and say to them, ‘It’s all going to be okay.’”

-Candice, Izzi’s Mom