"Like the purest light in a darkened world, So much hope inside such a lovely girl. You should see her fly, it's almost magical. It makes you wanna cry, she's so beautiful. God bless the butterfly, give her the strength to fly." - Martina McBride

Our Family's Story


“It isn’t good news or bad news. It is just news.” Samantha was almost 2 years old when her geneticist shared these words and diagnosed her with a chromosome 18q- deletion. The frequency of such a deletion is 1 in 40,000 children and the characteristics of such a deletion usually vary from one individual to another. In Sam’s case, she was born with a wide, right unilateral cleft lip, complete cleft palate, severe hearing impairment, delayed myelination, attention deficit hyperactivity disorder, mood disorder, eczema, autism and severe cognitive, speech and motor delays. As I watch Samantha today, I realize there was much truth to his statement. Sam is almost 10 years old. She has green eyes and curly, brown hair. She runs briskly from room to room in our home babbling loudly and happily, likes to play, explore, giggle, love and be loved. Sam enjoys books, music and sign language, can drink from a cup, eat from a spoon, walk and run independently, jump up and down and ride her Rifton tricycle. She is also a Special Olympics Texas athlete in aquatics, plays Challenger baseball and participates in ballet for children with special needs. 

Sam is a child with amazing courage, strength and resilience to prevail over multiple surgeries, medical tests and other challenges that many other people in this world will almost certainly never have to endure. How could this be “bad” news? Sure, Sam may look and act differently and she may not have verbal communication skills but it would be unfair to focus solely on her disabilities, or pity her. I will confess there was a time when I felt as if the world was literally falling apart. It was difficult to focus on the things Sam could do when it seemed like everyone kept telling John and I what she couldn’t do. We were besieged and our dreams had been shattered. We had many concerns because we didn’t know the answer to one big question, “Why?” There was no obvious answer to that question, however, the diagnosis of 18q- actually made us feel better because we were finally able to understand why Sam exhibited all of these characteristics. Though John and I still feared the possibility of severe mental retardation, we knew we had to remain hopeful. Sam needed to be given a chance to grow and it was our job to help her. 

Sam began receiving Early Childhood Intervention (ECI) Services in Katy at age 6 months. She graduated from ECI at age 3 years and then immediately began the Preschool for Children with Disabilities (PPCD) in the Katy Independent School District. Today, Sam attends 4th grade in an inclusive education and LIFE Skills setting. She receives deaf education services, deaf-blind services, occupational therapy, speech therapy, orientation and mobility services and adapted P.E. (aquatics). Sam loves her school, teachers and therapists and continues to make progress everyday.

Over the past 10 years there is no doubt that I shed many tears and often asked myself, “How many medical tests could possibly be ordered? How many more doctors would we need to visit and when would we all just have a chance to rest and enjoy each other as a family should?” I also thought, “Would anyone ever tell me and John that our child is ‘normal’?” To this day I still feel pain in my heart. I am not sure if it is a pain that will ever completely disappear, but I have learned not to dwell on it. In fact, it has made me a stronger person. I learned the world did not fall apart, none of these diagnoses could change the way I felt about Sam and I learned to dream new dreams. John and I have a love for Sam that is beyond measure and we know we are blessed to have such a sweet, happy, beautiful little girl with the ability to touch hearts and teach me, John, and other people who meet her, important lessons on how we should all count our blessings, nurture hope and appreciate our own abilities. 

Though John and I do not know what the future holds, we will continue to have dreams for Sam. Why shouldn’t we? We do see circumstances and conditions where she is unable to cope and Sam will often react to situations that she finds frightening in ways that others do not understand. Transitions are also often difficult for her so John and I try to see the world through her eyes – What would it be like if we didn’t understand our world the way others do? What would it be like if we could not hear? We identify, comprehend, assist and challenge, but we try to present challenges that will give Sam the possibility of success. John and I want Sam to have a happy and healthy life, to be loved unconditionally, to be understood, to laugh, to dream and to look forward to a promising future. We want her to be able to fulfill her basic needs and to achieve her fullest potential. We know that Sam is capable of learning. We can see it in her eyes and in her actions and we are optimistic that Sam will be successful as long as she is in a community where she is embraced, challenged and included. 

As Sam continues to grow, John and I will always have questions, will always be learning, and we are aware that the transitions and challenges that we will encounter every hour, day, week, month and year are not always going to be easy. However, with faith, love, support and optimism we can make it.

1 comment:

  1. Stopping by to say hello and read more about Sam and your family. Bethany's Mother, Esther. I don't know if I gave you a link to our site about Bethany but her it is: www.mysnugly.com Still undiagnosed but I am waiting for the results to fanconi anemia test.

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