Meet Sarah! She has a huge heart, and one can always find her eating PB & J sandwiches, binge watching Disney movies, and playing dress-up with her little sister Veronica. She is very independent, and loves to learn how do tasks on her own. To learn more about her amazing accomplishments, her superpower to brighten strangers' days, and more, read the interview conducted with Sarah's parents below!
1. To start off, can you tell me a little bit about Sarah?
Sarah is 8 years old as of March, and she was diagnosed officially with Apert syndrome after a genetic blood test at 2 weeks old. The doctors suspected Sarah had Apert, but we didn't know for sure until she saw a geneticist. Honestly, Sarah doesn't know life any differently, and she is such a normal kid in most ways! One example I can offer are her hands. Her fingers were fused at birth, much like a mitten. They were surgically separated in 3 separate surgeries from 9 months through 3 years of age. She does not have the capability of moving any of her knuckles, except the ones at the base of each finger. Her fingers are shaped differently, smaller than most kids her age; however, she has adapted beautifully to the use of her hands/fingers! As a baby, she learned to pick up blueberries not with the typical pincer grasp, but by using her first two digits. She can now write legibly, draw, color, cut with scissors, and do normal things that kids do with fine motor skills. This has been after 8 years of occupational therapists working with her!
2. What would surprise people the most about Sarah?
Sarah is really a pretty typical 8 year old. She adores Minnie Mouse and loves Disney movies. Her favorite foods are bananas and PB & J sandwiches. She likes to play outside, ride her bike, go to the playground. She is imaginative with her younger sister, Veronica and they play dress-up or dolls.
3. What are some of Sarah's best strengths?
Sarah is very independent. We see this as an asset, because she wants to learn how to do things on her own rather than relying on others for help all the time. She is friendly, smiles, and compliments people, cheering them up - even strangers!
4. What is Sarah's personality like?
Her personality is very memorable! Sarah is boisterous, talkative, and has a HUGE heart. She cares about people and is very thoughtful. A few weeks ago, our daughter, Veronica, broke a very special ceramic butterfly that my father gave me when I was 10 after he came home from a business trip to Venezuela. Sarah recognized that I was very upset about it and she wrote me a note that said, "Dear Mom, I love you. I know you like butterflies and that you are sad because Veronica broke yours. Here is another one from me. Love, Sarah." She drew a butterfly next to her name. It was so characteristic of her personality.
5. What are some of your favorite Apert resources?
There's an Apert group on Facebook that I've been a part of since Sarah's birth. Children's Craniofacial Association has also been very supportive of our family.
6. What is a recent accomplishment of Sarah?
Since Sarah is on the autism spectrum, she does not readily recognize appropriate social cues or emotions. Recently, she said to me, "Mom, I get nervous when things change." This was a HUGE accomplishment, given that in the past she would have thrown fits and tantrums rather than expressing her feelings, and appropriate ones at that. I have to give credit to her phenomenal counselor, Heather Crow!
7. What is the most rewarding aspect of raising Sarah?
Everyone tells me how Sarah warms their heart. I have had strangers tell me, "I really needed your daughter's smile today." When I stop and think about it, that is Sarah's gift - her ability to bring sunshine to people who are heavily burdened by life's worries. I could not be prouder of being Sarah's mother!
8. What message/advice would you like to give other families who have a child/children with special needs?
Raising a child with special needs is a challenge. There's no question about it. We are jilted off our axes when we learn about a child's disability, because it thwarts the vision/ideal we had in mind for our child. The concept of raising a child who is so vastly different from us can be daunting. I can honestly say I have very very bad days, even weeks. But what keeps me going personally are the moments when I see hope, light, or love through Sarah's life.
9. What has your daughter taught you?
To take life moment by moment, to appreciate the little things, and not to worry too much about complicated stresses.