I know Everlynn has epilepsy. I have digested it, accepted it and plan my day around anything that may cause a seizure. As a parent I probably spend many of my waking hours worrying, analyzing and stressing over them. It can be nothing short of exhausting.
Outside of the stress the disorder itself brings, a parent of a child with special needs endures a plethora of “your child is behind” conversations. I am aware of what my child can and cannot do. But hearing it repeated over and over from strangers, friends, colleagues, well intentioned physicians gets old. “Your child is about 1.5 years behind her peers.” “Do you notice how she cannot run?” “Why does her leg have that deformity?” You don’t realize how conditioned you become to hearing negative news until the light shines at the end of the long tunnel you’ve walked through.
Through a random stroke of luck, Surf and Turf has become my new best friend. For the first time in her short life, I got to hear the good things she can do. I got to witness her be talented at a sport I never thought she could do. I got to feel the pride over my daughter accomplishing a feat. Even more important, I got to see her confidence and spirit brighten up as she too realized she CAN balance. She CAN sit up for long periods of time. She CAN stand up and surf waves. Everlynn has grown leaps and bounds. Her balance, her core strength, and her CONFIDENCE have all excelled tremendously as a result of surfing. For the first time in her life she is climbing on her own, she’s motivated to find her own steadiness and she’s pushing through a weakness to get to her strengths.
You can find a physical therapist anywhere, any time, any place. But at Surf and Turf we found therapist that believed in my daughter. When I was scared that my two year old would be surfing, Jillian scoffed at my fear and embraced her age. When I was internally horrified by how large the waves were, Jillian encouraged Everlynn to fly to the sky over them. When I wanted to explain all the things Everlynn struggles with, Jillian saw her beauty and strength and knew Everlynn could do it all.
2013 was a memorable year for my husband and I. 2013 was the year we sat in a neurology office and heard the words "I have some difficult news, your child has a rare genetic disorder called Angelman Syndrome. This disorder causes global developmental delays so he may never talk, he may never walk, and all the dreams you had for him when he was born will need to be modified." We were absolutely devastated!
Jillian Stewart came into our lives 4 years ago as Carter's physical therapist. She saw Carter as smart, motivated, and capable of so much more than most people thought. She worked with Carter weekly, rain or shine, and truly believed in him and what he was able to accomplish. She never once has told us he would not walk, instead, she says "when he walks".
When Jillian began working with Carter he was unable to walk even a few steps independently. Today, I am happy to say that because of all the hard work and dedication Jillian gives to Carter's therapy, he is walking independently with just some minimal assistance when needed. There are very few times when someone comes into your life and makes such an impact that it is life changing, but in this case, Jillian has literally changed Carter's life forever! She has provided him with greater independence, and allowed him to live a more full life. We are forever grateful to Jillian, not only for her huge heart and compassion for Carter, but her ability and willingness to work tirelessly with Carter through the ups and downs that have been the last several years. We are forever in debt to her and we thank God every day that she was brought into our lives