3: Love Unconditionally with No Guarantees

3: Love Unconditionally with No Guarantees

From Chicken Soup for the Soul: Family Caregivers

Love Unconditionally with No Guarantees

He who has gone, so we but cherish his memory, abides with us, more potent, nay, more present than the living man.

~Antoine de Saint-Exupery

Life is very precious. With every breath and every cell in my body, I know that now. My teachers and role models were my husband, Stephen, and daughter, Maddison. From them I learned what being courageous really means, and I learned to love unconditionally, with no guarantees.

I find it ironic that I am considered their caregivers. Truth be told, I took so much more than I ever gave. I attained valuable life lessons that changed the way I think and act, and now the way I love.

The truth is, we are all interdependent and need each other. We will not survive our time on this earth on our own. It is why we are truly here on this planet—to care, connect, and love. In our caregiving role, we get to experience all three.

This is my story as a caregiver. May my lessons and insight guide you, lessen your load, and provide comfort on your journey.

I was a soldier in the Canadian Armed Forces, stationed in our nation’s capital city, Ottawa, when I first met my husband-to-be, Stephen. He was a civilian working at a large downtown company. It was love at first sight for me.

We had been dating a few months when he started to occasionally slur his words and stumble for no apparent reason. We thought maybe he was working too hard. Just in case, Stephen made a doctor’s appointment.

The doctor ran a few tests and had us back for a consult the following week. Never believing anything was really wrong, we were unprepared for the shocking and devastating news. Stephen was diagnosed with ALS—Lou Gehrig’s disease. We were told the typical life span was two to five years after diagnosis.

Our world, as we knew it, changed in that minute. Our plans for a wonderful carefree life were gone. Everything seemed uncertain.

Stephen’s first reaction was to end our relationship. This was what the doctors suggested. I had to convince him to let me journey with him through his illness. I wanted to support and love him, working side-by-side with him as he manoeuvred through this difficult time. He was hesitant at first, then finally relented. We would get through this together.

We didn’t know how we were going to deal with this challenge. Our first response was fearful, frustrated, and uncertain about our future. We were always questioning. Would this be our last birthday or Christmas together? We learned over time that this was not the best way to live our lives, uncertain and afraid. We had to have hope for our future; we had to learn to live life fully, even with all the uncertainties. We adopted the philosophy that he was not dying of ALS; he was living with ALS. We decided to marry and bravely start a family. Our beautiful daughter Maddie was born, and four years later a son, Derek.

Over the years, Stephen lost the use of his arms and was confined to a wheelchair. Every time he lost one ability, he seemed to refine another. Although he could not carry the baby in his arms, he could carry her in a snuggly as he rolled along in his motorized wheelchair. Later, he used it as the engine of a “train,” pulling his children and their friends in a wagon to the park. Even when I was anxious, I allowed him to fully participate in the lives of his children. He was limited only in his physical ability; his intellect, wisdom, and courage inspired and guided us.

Life was pretty hectic as his main caregiver. There were many hats to wear—wife, mother, soldier, provider, caregiver, advocate—and balancing them all was difficult. I had no role model, no mentor to show me what was right or wrong. I now know there is no right or wrong way. You just do the best you can.

I continued serving in the military the first eight years of Stephen’s illness, then took early retirement when he needed full-time care. The only other option was to have him admitted to a long-term care facility. For us, this was not an option; I was afraid he would lose hope and give up.

I admired Stephen; he was heroic in his fight. He held on as long as humanly possible. He lived nine years, not the two to five he was first given. I believe much of that drive came from the fact that he had meaningful roles to fill—as father to Maddie and Derek, as husband to me.

Six years after Stephen died, my beautiful daughter was diagnosed with cancer. My world collapsed again. I didn’t believe I had it in me to go through something so tragic again. I was overwhelmed and unsure if my heart could take it. I would have sold my soul to save my daughter from the pain she was about to go through.

I remembered the lessons I learned while caring for my husband: to love unconditionally, to live each day fully expecting no guarantees. I decided to commit one hundred percent to Maddie, to put my life on hold as I cared for her.

We bonded in a way much more powerful than we had ever experienced. I held her as she underwent three years of chemotherapy, multiple radiation treatments, and numerous surgeries. I held her as we laughed and cried together. I held her as she took her last breath. The same arms that carried her in birth cradled her as she passed away at the tender age of 15.

Thirteen years after the death of my husband and four years after Maddie’s passing, I can now speak from a place of wisdom and peace. I did not understand many of the lessons I learned until much later, after I processed the grief. I am now choosing to live with the loving memories. When I reflect on my journey with both of them, I cherish the experience of caring for them.

If you are a family caregiver, remember to love and care for yourself, not judging your performance, but knowing you are doing your best. Allow things to unfold, accepting that you sometimes have no control. Real stress is not caused by the situation—it is caused by our reaction to the situation. Respond to each challenge in a loving, gentle way.

I look back at those caregiving years and realize they changed my life. I learned it was an honour to be chosen (yes, we are chosen), to have journeyed with two of the most extraordinary human beings—my husband, Stephen, and my daughter, Maddie. Both courageous loved ones taught me and gave me much more than I was ever able to give them.

Be fearless, love unconditionally, and cherish every minute.

~Sharon Babineau

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