Jan 22, 2010
When Molly first asked me if I wanted to write something for her blog, I looked at the name (agoodgrief) and immediately made an assumption that she wanted me to write about Lucy. It was the only connection I made between Molly and myself and grief. I am Vic's cousin. I wrote about Lucy’s story and it’s impact and me. The words flowed so easily, as I was very emotionally involved with Lucy during those tragic moments. Molly loved my story, but she had intended for me to write about myself. I was slightly surprised. Here’s why: I had gone to the website and seen that the theme was loss. I have cerebral palsy, and I do indeed face many trials. But I don’t clearly recognize that on a daily basis. Or maybe I recognize it, but I don’t dwell on it. I don’t say to myself, “This is a trial. This is hard.” I just push through it. My struggles are normal for me. I know nothing else. I don’t wake up each morning remembering how different I am. I wake up expecting another “normal” day.
I have fought all my life with the word “normal.” For much of my life, I just wanted to be “normal.” I wanted to do what every other kid does. It would make me sad when I couldn’t do some of those things. But “normal” is really such a weird word to me now. Sure, there may be your “average” person, statistically speaking (one without disabilities). But the other thing I have come to realize is that my disability is not what defines me as a person. I am defined by my character, by my internal qualities and not my external qualities.
And so there is no “normal” person because each of us is unique—each with our own abilities and our own struggles and challenges. In fact, these struggles and challenges is what makes us normal—it is the common thread of the human population. I have come to embrace my weaknesses, my challenges, my differences—because they are what make me human. Paradoxically, they are what make me “normal.” And I love it.
From Spencer's Sister-Choosing Faith Over Fear by Shara Jackson
It was the week of my seventh birthday. I had gotten over my desire for a sister (I am the oldest and only girl in my family), and was excitedly anticipating the birth of my 3rd brother. I had glorious visions of cradling him, singing to him, feeding him, and helping my mother with all of the little chores of a newborn...in other words, a real-life, perfect little doll baby for me to play with! That little baby had no idea what kind of overly-dotting sister was waiting for him to join her birthday week.
And I had no idea how quickly a perfectly-imagined event can change.
One of the most vivid and powerful memories of my childhood took place shortly after Spencer was born (the day after my birthday). My Dad told the three of us older kids that some things had happened when the baby was being born. He told us that Mom and the baby needed special prayers. We all knelt down together beside the couch in our den. I looked up at my father--tired, filled with concern for his wife and newborn son--stalwart and faithfully offering a prayer of thanks and pleading.
I remember asking questions like "are they ok?" and "what happened?" and not really feeling satisfied with the answers. I didn't understand how everything could change so quickly. Mom was having a baby and it was our baby too--and now things were complicated.
Mom and baby stayed longer at the hospital and then the baby couldn't come home with us yet. The concern and worry were definitely present, but a spirit of peace and faith prevailed in our home--because of the choices my parents made during those challenging first weeks of Spencer's life. They chose faith over fear.
After different answers from different doctors, Spencer was finally given the diagnoses of Cerebral Palsy. My parents jumped in with both feet and haven't stopped running since. Their choice of faith over fear has made all of the difference in their journey as parents of a child with a disability--and further made all the difference for all of us--sharing pieces of the struggle together.
I remember a moment when Spencer was about a year old, we were snuggling on the carpeted floor. The physical limitations of his disability were not clearly manifest yet, but I had a momentary vision of what they would mean for him. I imagined thoughtless adults, rude school children, and daily challenges. I looked at his beautiful blue eyes and cried. I cried for the pain that he would someday feel from others' insecurities. I cried for the extra work he'd have to do to keep up with life in general. I felt a surge of protective-older-sister-
I couldn't think of a way to do it--he must grow up, and the world will offer what it will. I looked to my parents' example along the way. They worked hard to make sure he had the extras that he needed and encouraged him to participate in our family life as much as any one else. Their faith helped me to overcome my fears of the hard things that would come his way.
Spencer has become a beacon of light and inspiration for pretty much anyone who knows him--including me. He is one of my favorite people on this earth, and his disability is only an extra part of the perfect baby who was born the day after my seventh birthday. His confidence and determination to do everything he dreams of doing is another example of faith over fears.
Spencer is 22 years old & working on his bachelor's degree in accounting. And he has a 4.0--talk about perfection.
Have you ever struggled with choosing faith over fear?