My story is about Chris, my cousin and a woman in her early seventies who has been in a care-giving role for most of her adult life. Not only did she and her husband raise a large family but her husband has a 30+ year history of heart attacks and strokes and so has been unable to work during large parts of their marriage.
On top of this, recent strokes have left him quite cognitively disabled. In addition, Chris and Jim have a 26-year-old son, Ammon, born with spinal bifida and confined to a wheelchair. Although bright and pleasant, Ammon is totally dependent on his parents to meet his physical needs. Needless to say, the demands on Chris are continuous. She rarely gets a break from caring for others.
Chris deals with continuous uncertainty regarding the health of her husband and son. She provides constant, daily care to the two of them, making it difficult for her to get much time for herself. She can’t leave them alone. She also worries about their finances, particularly how to provide for the end-of-life needs of her husband. Chris also worries about dying and leaving their disabled son in the care of someone else and also wonders how to fill Ammon’s life with great experiences so he could feel joy and meaning.
To give you a flavor for what she deals with, here is an excerpt from something she sent me regarding how she was feeling when her son, Ammon, was just 2 years of age. Imagine. It’s now another 24 years later and she’s lived with the same stressors these many years. Here’s what she wrote:
The first two years of life for a child with Spina Bifida are fraught with danger and anxiety. The doctors and parents aren’t sure exactly how responsive and active the child will be until they get a little older. Ammon had many, many surgeries in that first two years. To say I was always scared is putting it mildly. I had to keep my cool around our kids and keep reassuring them when I didn’t feel reassured at all. We had seven children living at home when Ammon was born. Jim had another TIA during the first year of Ammon’s life and was unable to perform the tasks required at his work so he lost his job. Life was bleak and so heavy. I had never navigated such dangerous waters and I can’t remember a single time that I laughed during that period of time. I smiled a lot, hoping to buoy up my kids, but I never laughed.
Like I said, this was 24 years ago. She has continued these many years since, experiencing realities much like those she described in this paragraph. So, I’ve asked her how she does it today. What gives her the courage to carry on? Here is what she wrote:
First and foremost is having faith in a loving, merciful God.
I try to find ways to laugh through hard things.
I need someone in my life who can let me just spill (my guts) once in a while. Visits from family and friends mean so much.
I try to gain as much knowledge as possible regarding health issues of Ammon and Jim. This medical knowledge gives me a feeling of power.
It always makes me feel better when I serve others, not just my immediate family.
Getting feelings out on paper and verbalizing feelings and events helps.
Hobbies are important. Photography got me through some stressful days at work when I’d walk during my lunch hour. It helped me focus on beauty so I could put my mind in a better place.
After sharing these ideas with me, Chris wrote, “Given all of this, I would not trade my trials with anyone else. Ammon has given me such incredible joy that I would go through it all again just to have him in my life. I’m grateful his health is stable. He is my rock. He is so calm and uplifting. He always (!) takes the higher road and is a constant example to me how to be more God-like. So his difficulties have strengthened all of us and we will be forever grateful that God sent him to us.”
Chris inspires me by her constant care-giving.