Elijah giving his dad a “thumbs up” before surgery
On February 2, 2015 my brave boy underwent his second mid-face advancement. His first was when he was five years old. It was one the toughest surgeries and recoveries we (Elijah, myself, and husband) had to deal with. So we started preparing ourselves months in advance for the second mid-face. We were bracing ourselves for a long and rough recovery both physically and mentally. As a parent, when you see your child in such extreme pain and there’s not much you can do but sit by his bedside holding his hand and praying, it literally breaks your heart! I so often asked God to put me in his place and let me be the one to go through the pain!
Elijah has two very rare syndromes, Crouzons and Chiari I Malformation. He lost his vision at the tender age of two years old. He went from being fully sighted to waking up only having light perception, seeing shadows and seeing the contrast between light and dark colors but not the colors themselves. He has a VP shunt, a tracheotomy, has several seasonal allergies, and is now being tested to see if he is having seizures. He wears hearing aids and walks with the use of a mobility cane. His life consists of attending a specialized school for blind children, taking many medications, and having lots of therapy sessions (physical therapy, speech therapy, orientation and mobility therapy, hearing therapy, and counseling). He has tons of doctor appointments with the many different specialties that follow him (neurosurgery, neurology, ENT, urology, podiatry, pulmonology, ophthalmology, genetics, plastic surgery, maxi-facial, and his pediatrician). I am so grateful to each and every one of his physicians. We are frequent flyers in the Pediatric ER at Montefiore Medical Center.
Reading all of the above you would imagine a very fragile little boy who can’t do very much. Well he is the opposite! I was asked to write a story about Elijah that shows what a “success story” he is. I could focus on the over 40 surgeries he has had in his eleven years of life and how each one was a success and has changed his quality of life for the better. I could focus on how his therapies have helped him reach his potential in terms of navigating his school, taught him how to work his hearing aids independently, or even how his extra tutoring is helping him catch up in math class. However, when I think of success and my Elijah, I think of things like how happy is, how he loves unconditionally, how he loves to tell jokes, and how very much he loves his friends and family! My boy, with all he has been through in life, could be sad, depressed, and angry at the world; but he’s not (although sometimes I am). He brightens my life with all the joy he has in his heart. He is the youngest of four boys and plays along with them as if he didn’t have a worry in the world. He touches the lives of others in a way that I have never seen before. He is a warrior and my hero. When I look at him laughing and goofing around with his brothers I truly feel blessed! A boy who has the right to feel miserable but instead is one of the happiest most loving people in the world……that’s what I call a success story!!!!!
Written by Rebecca Ramos aka Elijah’s mom