I want today to be just like any other, but it's not.
Today is February 1. Five years ago today my son Spencer broke his neck and was diagnosed quadriplegic. He was only thirteen years old, my baby, my child. The split-second, life-changing shock was followed by months of hospitalization, a home remodel, reconstructed lives, years of fundraising, endless rehabilitation, ambitious goals for independence, financial obstacles, dedicated effort, isolation, and study. Though our journey was marked by detours and pitfalls, we grew stronger with each challenge we conquered. We made new friends and learned deep gratitude for each day. And astonishingly--luckily--Spencer's story has largely been one of triumph.
Five years later, this is our new "normal life." Now it is watch and wait.
I watch Spencer and marvel. In five years he worked his way from a totally dependent, physically compromised and overwhelmed teen to a capable and confident young man creating great opportunities for himself. He graduated high school last spring with a 4.3 GPA. He is attending college, living virtually independently in a dorm room at USC while studying chemical engineering. He is able to navigate the campus in his wheelchair and walk short distances in his dorm. He made the Dean's List his first semester. He went skydiving during Christmas break. No matter the degree of his disability, Spencer focuses on his abilities and he is unstoppable. Who would have guessed five years ago, when even breathing required a machine, that Spencer would be where he is today? Every day is a wonder and if people learn anything from Spencer's story it should be to never, never give up.
I also watch all of the research related to spinal cord injury and paralysis: PTEN, Schwann cell patches, axon growth, clinical trials, stem cell transplants, neuroplasticity stimulants, muscle spindle feedback loops, intracellular sigma peptide injections, and more. And behold the rising tide of life enhancing gadgetry including exoskeletons, mind controlled bionics, and exciting neural implants. Blessedly, there is funding going into so many research areas resulting in promising knowledge. But alas, so far there is nothing to help. Nothing at all.
I wait for something that might end the suffering, not just for my son, but for so many others. Paralysis from accident and disease will impact 1 in 50 Americans sometime during their lives. There are 5.5 million Americans living with paralysis, including 644,000 children and adults in California. Paralysis is devastating to individuals and families. Complications from bowel, bladder, pressure sores, and neuropathic pain can leave people living in misery. Autonomic dysreflexia and infection present a constant threat. Paralysis is every single day, resulting in lifetime care costs as high as $3-5 million for a high level cervical injury and cost burdens are most often shifted to the government. SCI does not discriminate among young and old, rich and poor. We need cures.
Mostly, my mother's heart waits for a breakthrough. Spencer has so much, but I am greedy and I want more. I wait and I watch and I hope for something--anything--that will help my son live without physical restraint. I want for him to be pain free, with a full range of motion, cat-like reflexes, an athlete's balance and two good strong hands. Sometimes, at night, I have vivid dreams featuring Spencer sprinting, lunging and laughing carefree; he seems much younger in my dreams. I wait for my dreams to come true. We are closer than ever before.
Five years and I will never give up hope for a cure. Never.