February 21st, 2020 is National Caregiving Day, and it’s the perfect opportunity to let my friends know why I created a caregiving nonprofit named for my beloved son Christopher, named, the Christopher Smith Foundation. www.csf etc. Through this foundation, and to pay tribute to the magnificent life of Christopher, I embarked on a newly realized journey of recognizing and thanking Caregivers for their selfless acts of kindness.
I feel fortunate to have been Christopher’s mom, he was a special and unique child who changed my life for the better, his life had meaning, and his legacy continues through the Christopher Smith Foundation.
It’s been nine months since his passing and my heart still aches for him. The onset of his poor health in his final years, directly attributable to the barriers to care that exist for him, and for vulnerable populations like him, caused his early demise.
When a child has special needs, the family finds itself defined by the love it gives and receives. When that child dies, the family suffers not just the loss of the child, but the loss of an intense and focused life. Such was the story of my own life.
Christopher was born with profound disabilities including Down syndrome and related disabilities. This meant that he couldn’t articulate his health needs. What he could articulate, which was the very essence of what he meant to his family and to the entire world, was an enduring, all-encompassing, non-judgmental love.
The Christopher Smith Foundation exists to say thank you to people who are juggling work, family, and the demands of caring for a disabled family member. Oftentimes caring for a loved one can be mentally and physically exhausting and can take a heavy toll on the caregiver’s career, personal health, and happiness. We created the Foundation because of an intimate knowledge of the toll on the extended family.
Chris, a much loved and treasured son was unable to communicate his basic health needs. Throughout his short life, he never complained of a toothache, a headache or more. Like so many folks like him, he was made of the stuff of warriors.
What Christopher lacked in intellectual capacity, he made up for with extra love to go around. Chris never met a stranger, he admired everyone he came in contact with, a fast food server, bus driver, caregiving worker, or an ice cream vendor. In connecting with Chris, you received unconditional appreciation, and if lucky, a loving hug that you would not want to disconnect yourself from.
Like so many family caregiver’s; life was spent in service to this son. This past spring, Christopher left his earthly body while wrapped in his moms loving embrace. That last night, tucked into bed, snuggled on his favorite pillow, his forever pal super Grover stood duty, a silent witness to the awesome reality of the occasion, as my boy, endearingly appealed in a language known just to him, a question and look so trusting… what will we do tomorrow? more ice cream mom? maybe some mashed potatoes with burger blended in?
The home hospice angel softly murmured to distraught family he could go tonight… or, being the tough guy that he had proven to be, he could hang on for a while, but with a certainty born out of caring for so many, she whispered heart breaking words of wisdom. Christopher was entering the transition phase of dying, assuring us through her own experience. She spoke with conviction, her words a salve on broken hearts, ‘ this boy has a free pass to heaven’ … ‘a rocket ship to paradise’ she said. Oh yes, she had seen so many in her chosen profession, she would write a book about the magnificent journey of loved ones continuing on in a loving kingdom.
On National Caregivers day, and in tribute to the 65.7 million Americans representing 29% of the adult U.S. population, who serve as family caregivers for an ill or disabled relative, I dedicate this personal message in appreciation for your loving commitment. Whether a nurse or doctor, hospice or disability service caregiver, program staff member, or family, you are the angels who walk amongst us every day.
Life is rarely easy for a parent of a child with significant needs–or a husband taking care of a recently diagnosed spouse suffering from dementia. In fact, it’s difficult and complicated, with very many ups and downs, good days and bad days, good years and bad years.
Our Christopher died peacefully, in the security and warmth of his own bed in his own home, his family and his friends and caregivers Sonny and Raquel at his bedside. His legacy remains with us through the Christopher Smith Foundation, comforting us in our grief and loneliness as we wish we could turn the clock back and have him with us for many more decades to come.
When you hear of a neighbor who is shut in, taking care of a family member, why not lend a bit of love and kindness, offer to sit for a while so that the caregiver can take a much-needed break. Run an errand and most important take your hands, hearts and dollars and continue to build a community of people who care. It will not only warm every person, every family who needs help, it will be the spark that can start fires across the nation.
Send your support to the (www.csf ) so that we can continue to say thank you.