Finding out about Christina
Part One: The Body
There is a time in my family history that my mother refers to as “When we found out about Christina.” No, it’s not when she discovered that she was pregnant with me or even when I was born. It’s when she and my father received the diagnosis…
It was my second birthday. About a year and three months earlier, doctors had begun testing me to find out why my legs were floppy. They had probed my body with x-rays, needles, and electric currents, looking for answers. They had sought to draw the secret from deep within my body by pulling fluid from my veins and spine, and, finally, by slicing muscle from my flesh. And then they knew. They found the secret:
Infantile Spinal Muscular Atrophy.
The neurologist sat down with my parents and told them what had been discovered about their daughter. They were told that their baby with the big eyes and ready smile, their bright and happy child, was never going to walk. The muscles of her body would become progressively weaker, collapsing her spine in scoliosis and compromising her lungs. She would develop pneumonia, Dr. Norgren informed them. And, before the age of 13, their little girl would die.
“But,” he said as a kind of consolation, “she will always have her smile.”
Then and Now
Fast-forward over four decades (yikes!) and I, seriously crumpled, crippled, and weak in my wheelchair, am still here, still very much alive. Here is a picture of me celebrating my 40th birthday at a surprise party thrown by my parents and sister. Surprise indeed!
Although the doctors were wrong about my lifespan, they were right about pretty much everything else. I have never walked. Every year I lose some physical ability. After the age of two, I was no longer able to sit on a toilet. By the age of four, I was in definite need of a body brace to try to keep my collapsing torso upright. By the age of five, I could no longer put my hands on top of my head – and I could no longer brush my own hair by the age of ten. I couldn’t open a hardcover textbook at the age of fourteen – and I couldn’t turn the pages of any book at the age of 24. My early 20s saw the end of many things that I could once do: write longhand, brush my own teeth, feed myself… and that body brace was abandoned as futile by the time I was nine.
But, I’m still here.
So, what did my parents really find out about me all those years ago? They found out about my inabilities. They discovered that my body was slowly weakening and that I would always be as physically dependent as I was at the age of two. They found out that their lives as parents would be vastly different than what they had planned and that many of the dreams that they had had for me would not come true.
Of course, my parents had already known “Christina”, had known my identity: I was their daughter, a gift from God. But, with that day of diagnosis, this knowledge had become, temporarily, an uncertainty as they thought about the difficulties and sacrifices ahead, and the sorrows that I would surely suffer under the burden of my disease. Because my disease was of recessive hereditary (I had inherited a defective gene from each of my parents, resulting in the motor neuron defect) my parents knew that there was a 25% chance that they could have another child with SMA. They had had no idea that they were passing on such a thing to me – but, if my mother were to become pregnant again, it would be with my parents’ full knowledge of the possible results. My mother did not want a child to ever blame them for bringing him or her into the world knowing that he or she could be so disabled. For, surely, they thought, even I would blame them for giving me such a debilitating disease.
Clearly, what my parents did not find out about me on that day was that I would never blame them for bringing me into the world. No. Rather, I am grateful every day that they did! Disease or no disease, I have always been glad to be alive. Dr. Norgren had been right about my smile – not only have I, with my facial muscles unaffected by SMA, been able to retain my ability to smile, but I have also kept my capacity for smiling, for joy. Even with the struggles and tears of my childhood, my parents found out soon enough that I would always be there bright and happy daughter, loving them, loving life.
And then my parents gradually found out something about themselves, too. That momentous day was also the first day that they began to discover their own strengths and unique gifts. Strengths and gifts not readily apparent in their grieving, but slowly unfolding within them and between them, like a rare flowering plant of terrible beauty rooted deep within their hearts, branching out to one another and to me.
Your attention has been drawn to these words of mine because you want to “find out about Christina”. Well, you now know what is most important about me – that I am loved and grateful for life. This has always been true about me and, I believe, it always will be. But, there is one more important day of discovery in my life that I would like to share with you – the day that started my waking up to true gratitude and love. It was the first day that I truly began to find out about Christina.
Continued soon in Finding out About Christina Part II…
© 2017 Christina Chase