Posted by Katherine Carol
Let’s start this new year together!
“From one small seed of our first encounter have come many harvests.” Russ Berkus
Mikelle and I, along with our friends at Shining Beautiful, are taking time to reflect on just where it we want to go this year. We do this every year and thought we would share it with you as we embrace the possibilities of 2016. This month, our blog series focuses on the unique aspects of goal setting and life planning for families who experience disability. Caregivers and advocates, please pay careful attention.
We all know there are times in life when a force, the size of a tsunami, rolls toward the shores of our existence. Life’s terrain is forever altered and so are we.
The tsunami is called disability and however it has come to the shores of your life, through the birth of child, an accident, war, or simply aging, life’s familiar landscape has changed. Old dreams, old routines and even many long-standing relationships wither over time. Life can feel shallow, even empty, but perpetually busy.
You wait for a new dream to emerge out the chaos, perhaps a seed of hope floats on the winter wind and lands in the warmth of your beating heart.
New dreams are possible, even as an active caregiver. The seeds of desire are fed with vision and hope. Dreams grow in an open mind and warm heart. But, first you must understand how to navigate through the debris of doubt.
During your radical departure from what was once was “normal”, questions arise.
“Can I take care of this person?” “For how long?”
“Am I strong enough?”
Your doubts become almost as disabling as the particular condition you or your family member experiences. The aftermath of a storm pushes you into survival mode.
More intruding thoughts.
“How do I get the right doctor?”
“Will therapy make a difference?” “
“What medications will help? Will they do more harm than good?”
“How are we going to pay for this?”
These and other important questions are often “chronic” in nature. Commonly, the answers are illusive as ice water in the desert. Family and friends begin to distance themselves. Not out of lack of love, but from frustration. They simply don’t know how you do it and are unable to figure out a way to help. The little things they think might work will never “fix” it.
Loneliness grows fertilized by your despair. As a caregiver, you re-double your efforts despite the fatigue so deep; even your bones feel tired. Guilt, real or not, consumes you one day at time. You feel you are never doing enough. There has to be a solution, an answer out there, somewhere.
The computer screen lights up a moment of a quiet night. You know you should be sleeping, but can’t. Perhaps, another mom, spouse or caregiver has an answer or has knowledge of a hidden but needed resource. You and Google are now best friends.
And, so the cycle begins. You sprint toward solutions until you collapse at the end of the goal line only to realize it’s moved. You get up again, run to a doctor’s appointment, go to a school meeting, cleanup another crisis.
The reward for your efforts can be the touch of hand, a smile or a step that you never thought possible. However, is it enough?
What about you? Who is looking after you, the caregiver?
Caregivers are the invisible support structure in the massive complex system of support designed to care for our loved ones, no matter their level of ability or disability. It is the caregiver turned advocate that journeys through the foreign lands of insurance, Social Security, medicine, education and regulations and funding.
The road map is confusing for the terrain changes every year.
As part of the invisible support, you may find yourself without a name. At the school meeting you may be referred to as “MOM”, or at a meeting with the doctor you may be referred to as “Mike’s wife” or “Sarah’s husband”. Rarely are you seen as the expert in the room, and in most cases you are the one person who knows the story inside and out, who sees beyond the disability to the abilities your child or loved one possesses. You cheer-lead, advocate and orchestrate all those resources so your loved one gets the best support possible. If you are too loud you get your own label. You are known as the “difficult mom or spouse.” Known not by your list of accomplishments, but your advocacy for the person you care for.
Perhaps, the name of this e-course is more appropriately named, “Life Planting”. For every passionate thought you have, positive or negative, is a seed planted in our future. Every time you focus our energies, take action, tell our story, you nourish our dreams or nightmares. And, like the farmer who is too tired to get up in the morning, has too much to do and not enough help, you learn to trust the practical mysteries of life knowing that commitment and self-discipline will lead to a good harvest most years.
Focused intention can shape either positively or negatively persistent poverty or persistent prosperity. Remember poverty comes not only in the form of lack of money, but lack of time, friendships, health and perhaps, most of all—the lack of opportunity. Prosperity comes from a rich and meaningful life where the gifts given to you at birth are given an environment fertile enough to grow.
It is time to start planting a new garden for you and your family. This course is about personal growth, going for the good stuff in life and finding balance, health and happiness even when you experience disability in your family.
To every time, there is a season.
We invite you to visit our website at The Shining Beautiful Series for additional blogs and information on 21st Century Inclusion. Let’s celebrate the good life for all.
