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    Posted July 8, 2014 by
    ghuxfam
    Location
    Brookhaven, Mississippi
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    An Extraordinary Life

     

    CNN PRODUCER NOTE     After struggling to find the answer to her daughter’s health problems, Glenda Hux’s finally received a diagnosis when Lillian was two-years-old. Doctors diagnosed Lillian with cardiofaciocutaneous syndrome, a disorder that affects the heart, facial features and the skin, and causes developmental and intellectual disabilities.

    When she and her husband found out about Lillian’s condition, there was a whirlwind of emotions. "We were crushed,” Hux remembers. "We discussed what the new diagnosis meant for us. The hopes and dreams we would have to mourn. Separating our own expectations, dreams, and desires for our daughter from what the new diagnosis meant for her was the first step to accepting the extraordinary blessing we had been given.”

    One of the hardest parts of working with Lillian’s condition is the difficulty in accessing local related services because her condition is so rare. It takes Hux an hour to get to most of her daughter’s doctors in Massachusetts. She hopes that as her daughter gets older, more experts and services will be available.

    Recently, Lillian started getting seizures and is on medications that have affected the rate and degree of her progress, like using language. One of her biggest barriers is forming expressive language. Lillian is now 10-years-old and her parents have adjusted the way they measure her success. “Long gone are the standardized tests, and developmental checklists I would use to measure her milestones when she was younger. We reevaluate informally, always,” she said.

    "She's outgoing, spunky, and friendly. She's thrilled when she's able to articulate her thoughts or feelings for the first time,” Hux said. No accomplishment is too small to celebrate for the family. “We'll never forget when she took her first steps after eighteen months of daily grueling therapy sessions, when she conquered toilet training at age three, when she said I love you for the first time,” she said.
    - Jareen, CNN iReport producer


    1 in 300. Many people can't begin to fathom the journey a family faces when an extraordinary child comes along. Imagine your child being 1 of 300 extraordinary children in the entire world.

     

    After Lillian's birth in April, 2004, a ten day stay in the neonatal intensive care unit for low blood oxygen saturation levels followed. Our healthy pregnancy had brought into our family a bouncing daughter weighing 8 lbs 8 oz. and measuring 19 1/2 inches. We didn't understand why she needed supplemental oxygen. During our stay, a well-meaning visitor in the neonatal intensive care unit told my husband and I: “God is in control.” I remember thinking...yes, he is...and HE's going to FIX this for me. The breathing issues were resolved after a pediatric ENT recommended a nasal spray. We went home to Brookhaven, MS completely unaware of the possibility our lives would be anything less than ordinary.

     

    At three months old, I could tell Lillian wasn't following a typical motor developmental pattern. For starters, she had trouble feeding from a bottle from birth (nursing was out of the question)...failure to thrive was her label at six weeks old. Knowing this is a very atypical symptom in a child, I began to search for answers. None were readily available. At eight months old, after much prayer and opposition from well meaning loved ones and puzzled looks from physicians, I contacted a physical therapist. . . At her follow-up with the pediatrician that month, I remember saying "Lillian can only sit if placed in sitting. She cannot roll, she cannot lift her head during tummy time and she has a simian crease." I'll never forget how she opened Lillian’s tiny hands, looked me in the eye and calmly suggested we see a geneticist. She tried her best to hide the fear in her eyes. No one believed something could be out of the ordinary with our precious little girl before then.

     

    However, the only appointment available with the one geneticist in our state was eight months away. Feeling desperate for answers, we opted to secure an appointment with a geneticist in New Orleans, but disappointedly received a misdiagnosis there. "There's no genetic test for her condition. The only diagnosis available is based on clinical findings. There's nothing else you can do," he said.  Lillian was one year old. After hurricane Katrina flooded the city of New Orleans, we were redirected to a new geneticist in Jackson, MS. The correct diagnosis finally arrived on May 5, 2006. Lillian's genetic testing results were positive for a rare disorder: Cardiofaciocutaneous Syndrome--rare as in less than 300 in the world, we were told.

     

    What began as a small internal flame of fear was now a bonfire! What will the future hold? Will my child be the one exception to the rule? How smart will she be? Will I ever see her graduate from high school? ---in my pre-parenthood dreams my child would be attending an Ivy League school. How will her new diagnosis affect her quality of life, her health, her ability to make friends, marry? . . . All our hopes vanishing like smoke. Many other fears lingered, will I ever hear her say "I love you"? Will she know and comprehend the love of God? How long will she live?

     

    Fast forward through eye surgery, intestinal surgery, cardiac deformities, seizures, difficulties finding appropriate care, schools, therapists, regulating medicines, and individualized education plan meetings. Add to it financial and health insurance coverage concerns and you've got a parent with extraordinary needs too.

     

    As for the successes, we'll never forget when she took her first steps after eighteen months of daily grueling therapy sessions, when she conquered toilet training at age three, when she said I love you for the first time, when she strung a few verses together and sang for the first time, when she prayed for the first time. Lillian is very much full of joy and unconditional love. "Give me a hug!" is her favorite phrase. This last school year she even received a Star Student Award at the end of the year! In her extraordinary world, every day is cherished, every "minor" milestone a source of joy and accomplishment for us.

     

    After ten years of parenting Lillian, I still get well- meaning comments from others: "it takes a special person to be a parent to her,” or “I wouldn't have another child if I were you,” or “do you mind me asking what's wrong with her?" I always take their comments with a grain of
    salt. Lillian is our only child. I know there's no way they would know what it is like to raise an extraordinary child much like we don't know what it would be like to have an ordinary parenting experience.

     

    To raise an extraordinary child means facing fear straight in the eye at the first signs of delayed milestones. It means researching every resource known to man to find a clue to either confirm or deny your fear. It means feeling alone when the world tells you nothing is wrong. Inside you, there's this inexplicable visceral feeling--the fight or flight response--but no words can convey it. Deep in your soul, there's an ache . . . you know you're looking at a situation that cannot be fixed. A little voice inside alerts you . . . the challenges this baby is facing will impact the rest of your life and will transform you into a person you never knew you could be. Yet, there's no confirmation. When it finally comes, the news is much worse than you ever wanted to hear. The prognosis is bleaker. The genetic tomes do not offer any positive findings or answers. The fear intensifies.

     

    Raising an extraordinary child is an emotional roller coaster primarily dependent on the kind of day your child is having. It’s also dependent on how much hope you can muster to reassure yourself your child will be ok. It's a life lived outside your comfort zone. As the only voice your child has, what you think you should do no longer matters because the stakes are too high to remain quiet or idle.

     

    It's a life filled with prayer. Praying to find the right fit to meet each of her extraordinary needs, to find a way to allow her full potential to be fulfilled, for God to spare her life when sick, for guidance on what to do or not to do about every parenting decision. It's listening to answered and unanswered prayers; knowing there's a lesson in each. It's praying God will help you decode the language your child is unable to convey verbally so she can be protected when she's sick, away from you, or simply overwhelmed with her environment.

     

    It's an extraordinary life lived out of your comfort zone because every day, every milestone, every new and positive development is a gift and you have no control over the outcome of any of it. It's giving it all with no guarantees. It's running a race even though someone already told you finishing would be an accomplishment and winning, well . . . out of the question.

     

    I often think about that well meaning visitor in the NICU. God is in control, he said. INDEED! Yet, he's not in the business of "fixing" things. He is creating a masterpiece in every life my extraordinary child touches.

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