I choose to walk away from the heavy burdens of today, and walk towards a brighter tomorrow.
I recently had the privilege of corresponding with Alysia, a wonderful mother and woman, about her incredible 15-year-old daughter, Desirae. Desirae is a typical 15-year-old girl who loves to ride horses and loves animals. Her spirit is kind and gentle. She is also her mom’s biggest advocate in adoption. Her mom plans retreats for those affected by adoption and Desirae loves being a part of the process. Why her love of adoption? Desirae’s mom is a birth mom of a couple of her siblings, and Desirae will not be able to have children of her own. Why?
Desirae was born with a unilateral cleft lip and palate. There had been no indication of cleft difficulties when ultrasounds were completed throughout Alysia’s pregnancy. It wasn’t until Alysia gave birth to her daughter that the doctors discovered the cleft issues. There is an 80% likelihood that any children that Desirae had would also have a birth defect like hers, or something more serious, such as spina bifida or hydrocephaly.
Desirae was a fighter from the moment she was born. At four days old, she underwent her first surgery to repair the clefts. She is currently scheduled for her 10th surgery in July 2015. In addition to all of the surgeries, Desirae did speech therapy until she was 10 years old to assist in learning to produce sounds and perform “everyday oral motor routines,” like blowing a kiss to a loved one, puckering your lips to give a kiss, or using a straw to sip chocolate milk.
The doctors and specialists Desirae and her mom went to advised them not to get their hopes high. The doctors didn’t believe Desirae would ever be able to drink from a straw or to blow a kiss to her family and friends. Well, Desirae proved the doctors wrong. Her parents had straws in their house, and not for them! Desirae learned to use them. She also blew kisses to family and friends. Desirae is a strong girl who is becoming a strong woman.
As you can imagine, it has not been an easy road for Desirae, her family, or friends. The world can be a very cruel place. Desirae was, and still is, the target of bullying. Although she has had multiple surgeries to correct her clefts, and went to speech therapy for years, children still find it fun to bully her. Bullying has caused Desirae to develop intense social anxiety. Her mom relayed to me that she doesn’t make friends easily and spends most of her time with Alysia instead of teenagers her own age. She has been called many horrible names throughout her life, and many kids and teens view her as “a monster.” I can’t comprehend how this bullying makes Desirae feel and how she copes. Desirae is resilient, though, and she keeps going out and trying to make friends. This is great, but what saddens me is that her mother says that she hides her true, beautiful self when she befriends people. Why? Fear. Fear that her true self will scare others away. As her mother put it: “She lives a very quiet and friendless life. It tears me apart.”
I asked Alysia how she handles bullying as a parent. Her response: “Oh my gosh. It’s so hard. These children are SO HARSH!” It is horrible, and devastating not only to Desirae, but to her mom and family members who have to watch the aftermath. Her mom works closely with her school counselors and her social counselors as much as she can, though she tries not to overstep her bounds with Desirae, who is currently in the throes of adolescence. The teenage years presents a whole other slew of insecurities on top of how Desirae feels because the curvature of her mouth and the way her speech is slightly different. I credit Alysia with being there for her daughter, and making sure her daughter knows her mom is in her corner, ALWAYS.
Alysia and Desirae reside in a town that does not have many support services for those affected by cleft difficulties. They used to reside in a state that had a yearly meeting for children with clefts, but nothing more than that. More support needs to be available for each person affected by cleft difficulties. Support in the form of support groups and educational seminars and webinars. And not just the person with the cleft but also for parents, guardians, family, friends, educators, and coaches.
My hope is this: Desirae, I hope you learn to believe you are beautiful, outside and in. Do not let bullies knock you down. I know it can be hard, but you stay on your feet, and educate those bullies. Bullies are mean because they are ignorant. You can stop the ignorance. YOU CAN EDUCATE TO ERASE IGNORANCE about clefts. Alysia, my hope for you is that you keep smiling and knowing that you are the kind of mother I aspire to be. You always make sure your daughter’s well-being comes first. Together with your daughter, you will conquer ignorance and breed education. Through education and support, understanding can begin. Thank you for allowing me this wonderful opportunity. I have learned so much, and one day I hope to meet you all in person.
