Normal

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.

Spencer Jackson

 

 

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-adrenaline: I wanted to cradle & protect him from all of it.

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?

 


Comments

Susan Yarbrough on 01/22/2010
I am proud to say that I am a friend of Shara Harper's, and I was blessed by her post and by Spencer's as well. Have I ever struggled with choosing faith over fear? The answer came to my mind immediately and with painful clarity. After my husband and I's beautiful baby boy was born in 1999, I began experiencing postpartum depression. As all new parents know, life becomes so busy and full of wonder that your concern for your own welfare fades. As time wore on, things seemed to get better. In retrospect, it was my life's version of the "calm before the storm". Anxiety, depression, and a growing inability to concentrate began to swallow me whole. What I did not know was that I was experiencing a chemical imbalance in my brain. I cast about wildly, trying to re-orient myself with my values and my faith. My husband and I would list my blessings over and over, almost as if the chant would "fix" whatever was wrong. I could see with my eyes that I had a blessed life; I could feel with my heart the love that Jesus, my family, and friends had for me, but my mind ... it was as though someone had begun to record over my favorite movie with something dreadful. Fear rushed through my mind -- horrible thoughts of tragic events, involving my loved ones -- images that literally evoked physical pain. Eventually, thoughts of suicide began to swirl around and finally formed into an unspeakable, solid plan for myself. This illness had taken me to a place where I truly believed my family would be better off without me. A part of me knew much better, and it fought against this plan as hard as it could. My mind was in such a haze that it was all I could do to rise each day and take care of my son. My husband was patient beyond belief. Even though he didn't understand what was going on, he didn't judge. He just kept telling me to hold on and that we'd get through it. He had no idea where my thoughts had taken me. That is where Jesus took my fear and used it to keep me tethered to Him by my faith. The plan may have been in my place in my mind, but my heart cried out for my husband and my son, who would have to try to cope with the result of my choice. The Lord also blessed me by steering me toward a kind doctor who counseled me and prescribed medications to help correct the imbalance. I was diagnosed with bipolar disorder. I remember, clear as day, the doctor looking me straight in the eyes at the end of our first visit, asking, "Can you promise me that you will not kill yourself until we have an opportunity to meet again in two days and talk some more?" My mind shouted, "No! I can't promise that!" My heart spoke louder than my mind and answered, "Yes. I will see you then." I had spoken without any real thought; I'm not sure how capable I was at that point of making decisions about my own welfare. But I do know that God firmly fixed visions of my son and husband in my mind from that moment on, visions of my son's little hand holding mine, leading me forward. I didn't know where we were going. I was afraid, and I didn't want to feel that way anymore. But I also knew that I couldn't leave those two beautiful gifts from God or throw my own gift of life back into God's Face as though it were unworthy. The Lord took the faith in my heart and used it to lead me through my fear, when my mind couldn't do that for me. Gradually, day by day, my health improved. My thoughts became clearer; my smiles became more frequent, and one day, I suddenly realized that *I* was "back". I praise the Lord for saving me -- twice. I thank Him for preventing that possible tragedy and for giving me the opportunity to continue to enjoy my family and to continue to grow as a Christian. I learned more than I can describe from that experience, and truly, I wouldn't erase it from my life if I could. The Lord poured blessings on me and my family during that very dark time, and He helped me conquer fear when my need was at its greatest. I know where my son, my husband, and I will go when this life ends, and I know that we will be together for eternity, serving Jesus. Fear lost its grip on me when it thought that it had won. Jesus won that victory, and I love Him so very much! [To Vic, Molly, and Peter: You are in our prayers every single day.]

angee on 01/22/2010
Beautiful! Both stories very touching. Thank you for sharing!

Shannan Hoffman on 01/23/2010
Spencer and Shara, thank you so much for sharing. I loved both of your comments. I am a mother of a child with multiple disabilities. My baby is 14 months old and the past year has been an interesting experience for my family. It gives me hope to hear about your experiences. I, too, have struggled with choosing faith over fear, and I know how hard it can be. Spencer, you sound like an amazing young man.

Jenn Clark on 01/24/2010
Thank you both for sharing. That was beautiful and, as always with this blog, just what I needed to hear. I've been diagnosed with a rare genetic disorder called Ehlers-Danlos Syndrome. I feel like it's taking over my life and I've been struggling to not let it define me, as well. I'm not very good at it yet :) but I like how you said, " I am defined by my character, by my internal qualities and not my external qualities." That's how I want to feel all the time. Thanks to you both for your insights.

jjpayne on 01/25/2010
These are all just really powerful thoughts. Spencer thank you for your definition of "normal" and what truly defines who we are. Shara the experience from you perspective means so much to me now because as a mother I see how each child that comes is "joining the family". It is not just my baby it is all of our baby and I do not underestimate the influence siblings can have on one another. I appreciate your thoughts and Angie's story (wow) on choosing faith over fear. I think it is a choice in the end.

Emily Falke on 01/26/2010
Thank you, Shara and Spencer, for sharing these thoughts. They are beautiful and uplifting.

Branden Bates on 01/26/2010
One early morning at a church class that my mom taught. Spencer was leaving the room after class. My sister played French Horn and would bring it with since she went to school right after the class. Spencer was talking to some classmates when he turned back around he saw my sisters french horn case in his path. With no time to stop his momentum he decided to leap over the horn, which he did successfully, while the entire class held their collective breath. He turned around to the class an said with a grin "That was one small step for man, one giant step for Spencer Jackson." Though I only heard of this through my mom and sister his words help me feel good when I do something that was challenging to me but may not be so hard for others. Thank you Spencer

Rebecca on 01/26/2010
What wonderful stories of victory, wishing you all well in the adventure we call life. (Thanks Molly for getting us all talking about what we need most!)

Mónica Pinto on 01/26/2010
Choosing faith over fear....for people that know me....don't really know me ....because every day i choose faith over fear,when I was pregnant the doctor told me... that something was wrong with the baby...and I prayed that no matter what the problem was I would love the baby ...I thought that would be easy...it is a battle every single day when I wake up...since I got the news that my child had a disability 3 years latter she was born....it is hard to live with that and every day accept it ....but I admire and it's an isnpiration the words I've read...it makes you think YOU ARE NOT ALONE.....thank you Spencer and Shara for sharing those beautiful words !definitely I choose faith over fear...

Amy and the Boys on 01/27/2010
Thanks Shara and Spencer! I enjoyed reading this.

Beth on 01/28/2010
I have a daughter, Betsy, who is 5 and has mulitple disabilities. She is the 3rd of 4 children. It was very difficult for me to cope with in the beginning of her life. For ME to cope. She did just fine, always smiling, always hugging everyone, always with love in her beautiful blue eyes. She just started walking a year ago, and is non-verbal. She signs a little, and works soooo hard to overcome so many challenges. This post is touching to me. I hope that our other 3 children (8, 7, and 3) feel the same way as Shara does about her brother. That is my greatest hope for the future. Betsy has taught us all so much. Choosing faith over fear is but one. Thank you, Spencer and Shara! http://oddgirloutblog.blogspot.com/2008/10/betsys-story.html

Sarah Hull on 01/28/2010
Well, I am just going to go ahead and add Spencer to my list of Hero's. I love his story and especially his outlook. It's people like Spencer that feed me strength as a mother of a child with disabilities. I am also grateful for the others who have left comments above and shared their personal stories. Choosing Faith over fear is something that I had to decide early on, or I would have driven myself crazy with worry. Thank you again for this post!

becky on 02/01/2010
Your blog is beautiful. Thank you for sharing your story and helping so many others. As a person who is going blind, I appreciate this post as well. Thank you - Spencer indeed you are my hero. (www.cruisinwithcricket.blogspot.com)

Joani Elliott on 04/21/2010
Thank you, Spencer for your profound words about what it means to be normal. I am the mother of a beautiful seven year old daughter who has Down syndrome. Your thoughts resonated deeply with me. Thank you for sharing.

Gayle on 08/26/2010
Shara I can't help but think of my own 7 year-old daughter anticipating the birth of her third brother. His birth was planned just days before her birthday and she was determined not to celebrate her birthday until after he was born. When he was born with low muscle tone and I knew he wouldn't be home for her birthday my heart broke for her. The NICU staff in the hospital pulled some strings and we were able to celebrate her birthday with our baby. He passed away three weeks later. Reading your story somehow gives me hope for her to one day be able to look back and see the good that her two disabled brothers brought to her life. Thanks for your story to Spencer. You sound like a true inspiration to others. I wish we all had a little bit of your attitude.


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