As many parents know raising a child with disabilities is a lonely and challenging journey.
In 1988 my last daughter was born at 27 weeks by Caesaraen section more commonly known as a C-section. There were serious complications during my pregnancy…but she however made her grand entrance into the world weighing a ‘whooping‘ 😊😊….1.3 kgs/ 2.8 lbs.
There are mixtures of joys and worries when you have to take your premature baby home. It’s scary to walk away from the care of hospital staff as you are now the primary caregiver to your tiny lil miracle.
There were definitely lots of high and low moments….but for the grace of God.
In 1996 at age 8, Eddie was diagnosed with Global Developmental Delay which means her early developmental milestones were not reached at the expected times. Her fine motor skills, language, social, and cognitive skills were greatly affected by her premature birth.
In 2002, at age 14 years she had scoliosis surgery as a preventive measure to correct the curvature of her spine. It was decided by the doctors that surgery was the best option….her spine was supported with two titanium rods.
Hospital stays were almost the norm of her life with little or no information as to what the years ahead would look like. We had many questions with vague answers.
Google and internet were non existent in 1988. By 2002, the much needed info on the internet were minimal and frustratingly vague.
This prompted my third daughter to change her course of studies (Psychology) and go into Neuroscience so she can try and get answers to our many unanswered questions.
Blessing #1: Today, my third daughter has become a Medical Neuroscientist who creates and test new treatments for children with Neurodevelopmental Disorders.
Fast forward with me to present – my 1.3 kgs baby will be turning 30 years in a few weeks. She works with her dad as a junior accountant in his private company, and is an amazing mother doing a fabulous job raising a healthy and brillant toddler.
Blessing 2 :
On March 1, 2018 Eddie-Marie was invited by Dr Natalie Dick a Developmental Behavioral Pediatrician at Mt. Hope Hospital to be an observer and a volunteer for a Specialist children’s clinic. The clinic day was specially designed for children with Neuro Developmental Disorders & Seizures to be held at the Child Development & Behavior Unit at the Eric Williams Medical Science Complex.
Eddie had quite a pleasant surprise as she volunteered and observed alongside international professionals Dr. Dave F Clarke a Pediatric Neurologist/Epileptologist, who is from Baylor College of Medicine, Child Neurology & Developmental Neuroscience Department, Houston, Texas, USA…and Mr Kevin Moon EEG Technologist from Dell Children’s Hospital, USA.
She assisted Mr. Moon with acquiring EEG recordings of children living with epilepsy. Words cannot do justice to the excitement Eddie felt as she saw the brain at work since EEG allows medical professionals to see electrical activities in the brain. (Keep in mind what Eddie was assisting with on this day was only a dream for us in her time.)
I was touched by the care, love, support, and loaded information provided by the professionals at Mt Hope to the anxious parents of these precious little angels who are living with Neuro developmental disorders. I watched as parent after parent walked out of their appointments with HOPE. The medical team has their children’s well beings at heart.
There were no questions that were left unanswered. There was HOPE on everyone’s faces.
Sometimes the pain in our lives leads us to empathize with others who will walk along similar pathways. It takes a special kind of person to see the best in others.
Turn your Pain into Power. If God brings you to the road that you are on…be assured that He will NOT bring you this far to leave you alone.