“Mother love is the fuel that enables a normal human being to do the impossible.”
~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother’s Soul
“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.” ~Sophia Loren
I always wanted to be a mother, loved raising my children, still love being a Mom. My second child, my oldest daughter, was born with a terminal, genetic, neurological disorder, no medically known association with Stiff Person Syndrome. I refer to her as my “shooting star.” Her short life taught me patience, joy in the simple, appreciation for ordinary, and to cherish the moment. My faith was strengthened. With her death, I experienced profound loss. She helped prepare me for living with Stiff Person Syndrome on many levels, except how to be a disabled mother.
When I was diagnosed, my son was seventeen, almost grown. My youngest daughter was only four, still needing a “hands on” mother. Grief and fear were part of my emotional shock at diagnosis, not just for myself, but for her. How was I going to be an effective mother when I could not walk, barely crawl while in continual spasm?
In my website, Living With Stiff Person Syndrome, I share a pivotal moment. From the car, I watched my little girl struggle to open the heavy preschool door during a rain until a schoolmates’s grandmother opened it for her. As drops of rain trailed down the car windows, tears streamed down my cheeks . . . unfit. Back home, I struggled into the recliner. I prayed, cried, and thought of how I was going to mother my youngest child. Love will show the way.
Not one of my children came with a “how-to” manual. It was a learn as I go. I was young and inexperienced with my son, religiously followed healthy baby guidelines that are now outdated. With my second, learning/implementing medical procedures for her care, while coping with my son’s and my emotions were daily challenges. Love showed the way. With my youngest, I started thinking about how I could mother with a limited body. Imagination is wonderful and has no limits. It was day by day, struggle by struggle, wonder by wonder.
Books, movies, Barbie mall, beauty shop, doctor, dentist . . . we laughed and played. “In spite of ” SPS, I greatly enjoyed my daughter. She did not see my limits. She only saw me as Mommy, her everything. She made the syndrome magical in some ways — spasm was “spazzle.” Scooting down the stairs on her behind, she told me she wanted to have fun, “just like Mommy.”
As she grew, love not only showed the way; love made a way. In a parody of a spy thriller dodger, I would slide against walls, look for vertical tangible support with some sort of gait aid to attend her school functions solo. She was never ashamed of me, always thrilled for me to show up.
I did not discuss SPS with her much, just answered the few questions she may have had. Considering the personality of my youngest child, that is saying a lot. She did observe though. Recognizing distress, she learned at an early age how to help me. In many ways, my SPS was an unforeseen blessing/teacher in her upbringing. Strong and individually unique, she has an understanding heart, deep compassion, and wisdom; but zero tolerance for deliberate ignorance.
Now, she is a young woman with a family. I am in awe of her capabilities. My worried tears of so many years ago are now tears of pride. Since she grew up with my SPS, more than anyone in my life, she understands a potential trigger for my symptoms and instinctively knows how to aid me — shopping, hikes, neighborhood walks — finely tuned in to any quiver, startle, or stumble from me. As I held her hand when she was little, I still hold on to her for stabilization as an adult.
My children, my jewels from heaven. My son, my firstborn, is an accomplished man. To quote my son, “We did alright, Mom.” My second child, my angel baby, taught me so much about God, life, and myself during her brief life. My youngest, my blessing, gave me reason to live forward with the onset of Stiff Person Syndrome. With the innocence of childhood, she walked a difficult road with me. Through her eyes, she saw me.
To my children, who only see the best in me because they are the best of me. With all my love.♥
Chronic Chaos 