Then there was Eli.
Elijah William James was only 12; almost 13 come December, but he packed a lot of living into those years. What is truly amazing is that he did his thing his way in his own time in spite of the fact that his fancy sneaker clad feet never walked a single step. His personality carried him where he needed to go and where he wanted to be, with lots of love and support from his biggest fans, his family.
Eli was born with the rarest form of Spina Bifida -- Rachischisis or ‘complete spina bifida’. Spina bifida refers to the failure of the closure of the dorsal aspect of the vertebral foramen of one or a few vertebrae. Many of us are familiar with that particular spinal abnormality.
However, if many adjacent vertebrae are involved where the vertebral arches fail to develop at all, it is called a rachischisis, where the vertebral canal is open the entire length and spinal cord is exposed.
Clinical signs range from silent (spina bifida occulta), to mild, to occasionally severe depending on the level of the involvement of the spinal cord or the cauda equina, which is the sack of nerve roots (nerves that leave the spinal cord between spaces in the bones of the spine to connect to other parts of the body) at the lower end of the spinal cord. “Craniorachischisis is a variant of rachischisis that occurs when the entire spinal cord and brain are exposed – simultaneous complete rachischisis and anencephaly. It is incompatible with life; affected pregnancies often end in miscarriage or stillbirth. Infants born alive with craniorachischisis die soon after birth.”
In an early interview with the Vanderbilt School of Medicine, Eli’s Mom, Dawn, had this to say: “We spoke with 10 specialists during my pregnancy, trying to see if we could find somebody who would give us hope or help. It was completely unanimous; every one of them turned us down. There had never been a child, in documented history, who had survived with the size lesion he had,” she said.
Fighter Eli, who wasn’t expected to live a day let alone 12 years, changed the landscape of outcomes and opinions. That he did live was testament to his strong will to be with his family and enjoy his life no matter how long or short. And he did!
His days were filled with laughing and fun, but always challenged by one thing or another creeping in to interrupt the flow of his time with family and friends.
Thousands of people had the privilege of getting to know Eli William James through his mother’s diligent ‘diary entries’ via Facebook, which included lots of videos of Eli doing little boy things, then bigger boy things as he matured; by that point, activities included Tobias, the standard poodle service dog who, in reality, was far more than that. Tobias was a part of the family; another ‘brother’ who happened to have a lot of useful skills that allowed Eli to live and be in the world with a measure of safety and self-assuredness.
That Eli thrived was down to his own strong spirit to embrace life and to the devoted daily care of his Mom and the love and support of his sister, his father and others who were a huge part of his world. The medical teams who were a significant part of Eli’s life and living had a rare opportunity to learn from this little fellow. And learn, they did. He challenged their view of medical care and their part in it for all the days of his life. They most assuredly will never forget him. The lessons they’ve learned from Eli will carry them through the rest of their medical career and they will forever be grateful for having known him as a fine young man with purpose.
Reading the obituary of a child is a challenging part of the circle of life; knowing they lived and had parents and family who cared about them, no matter the length of their years. We wouldn’t be human if we didn’t wonder what happened to them that took them so early from living a life that’s full, to leave forever a family and a future unrealized. Many got to know Eli and his journey with profound disabilities, awed by his powerful personality. Yup, he was a force.
Though Eli is gone, the needs of children like him continue. How can you help in your community? Perhaps take a special needs babysitting course so you may offer relief for stressed families. Some haven’t had a break in years.
You could be the means by which they can allow themselves a bit of respite for a few hours now and then, knowing their child is safe and well. What a gift!
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell
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