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A Mother’s Tears

I have three drafts about running Philly for the Epilepsy Therapy Project. Each time the words weren’t quite there, but I wanted so badly to share with you my experience. Given the one thing that hit me the hardest in Philly, I am particularly overwhelmed with where our country is right now.

I am an adult. I was diagnosed with epilepsy when I was 32. There are a lot of annoying things that come along with that, but for the most part I am extremely fortunate. I had 32 years without epilepsy. 32 years of answering n/a to chronic health conditions on surveys. 32 years of answering n/a to current medications. 32 years of riding amusement park rides. 32 years of doing just about whatever I wanted to do without giving it a second thought. Because my epilepsy isn’t genetic I don’t live with the fear that I may have passed the gene to my children. I’m fortunate in more ways than I can count.

As we worked to raise money for this project I began to meet the moms of children with epilepsy. When we were in Philly I sat with a mother whose son is the same age as my youngest son. For no apparent reason at all, several years ago her son developed epilepsy. He can no longer communicate with her and they have yet to find any medicine that controls his endless daily seizures. He can not tell her what he wants for lunch. He can not tell her what he wants to wear. He can not tell her how his medicine makes him feel. He can not tell him when he feels something taking over his body in the form of a seizure. He can not tell her he loves her. He can not tell her he is mad at this thing called epilepsy that has stolen his life. This mom, this mom’s tears have stayed with me every single day.

I have thought how many times we hear a parent say when a child is ill “I wish it was me”. How fortunate I am that it is already me. I remember the heartache I felt when my mother told us she had leukemia. Then she said what I now understand. “If someone at this table has to have cancer I would rather it be me.” It’s the parent in us all, please God, give ME the pain to relieve my children the agony. As overwhelmed as I have been with grief for this mom and her son, I have felt so blessed that I am the patient.

Over the last two weeks I have seen so much pain and loss. Children of people that I love have lost their parents to accidents and sudden illness that we can not explain on this side of heaven. I was overwhelmed with the thoughts of those innocent children who lost their parents. Then Friday….I have no words… My thoughts were again of innocent children and their parents left behind. As we all did, I hugged my kids tighter and longer, and I felt even more blessed than I had just the minute before. Why? I have no answer. How? I have no answers.

What I know is this, just as I felt when I watched the tears fall from that sweet mom’s face in Philly as she shared with me about her daily struggles, I’m blessed in ways I can not fathom. What we must do is let those tears magnify those around us. Slow down and love on those that surround you, tomorrow is never promised. Today is here.

Copyright © Gatewood Campbell, December 2012

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One to Wear, Three to Share

It is November 1st! I have waited 11 long months for Epilepsy Awareness Month to arrive again! Last year was a new adventure for us and I was just getting my feet. It was only the beginning of letting people into my world. My family supported my efforts for 30 days by wearing purple, wearing and sharing purple ribbons, holding purple days their schools and encouraging me to be proud to be me; epilepsy, brain injury and all.

As I sit here now in my purple shirt, purple shoes, purple earrings, purple bracelets and purple ribbon, there is still a part of me that wants to gulp when people ask why I’m wearing a purple ribbon. Will it ever be easy to say “I have epilepsy”? Will I ever stop fearing the response or the stares? Will I ever stop that twinge of madness I feel when the alarm on my phone rings and I know it’s time to swallow more pills that will upset my stomach, confuse my mind, slow my speech and make my hair fall out? Will I ever stop fearing that SUDEP will take me during the night? If I’m completely honest, probably not. But living in fear is not living. So I’ll choose to live in awareness and share what I know and what I have learned, because I can’t let fear win.

Six months ago I decided to celebrate Epilepsy Awareness Month by joining the Epilepsy Therapy Project and running the Philadelphia Half Marathon on November 18, 2012. I knew I could run 13.1 miles. I assumed I could convince my Mom to go with me and make a complete nuisance of herself by decking out head to toe in purple and yelling my name all over Philly and pretending to be Rocky on the steps of the famed Art Museum. I even thought I could convince a friend or two to go and run with me. I truly had NO idea my friends would jump on board like they have! Seven other runners teamed up with me and have helped raise a lot of money for the Epilepsy Therapy Project. A lot of generous people and businesses have supported our cause and dug deep in their pockets. The outpouring of financial and emotional support has warmed my heart and given me great hope for the future of treatment for epilepsy.

This morning everyone in our house pinned on purple ribbons. When Justin left for school at 5:55 am, he had on his ribbon. When Johnny left for work I pinned a ribbon on his shirt. When Hunter got ready for school, one ribbon just wouldn’t do. “I’ll take three to share please.” Most people would put them in their pockets. Not my Hunter! He proudly pinned them all over his shirt, ready to tell the world “my Mom has epilepsy and that’s just fine. Here’s your purple ribbon!”

It’s November, and it’s Epilepsy Awareness Month! I am excited about a month of fun adventures, including seeing Charlotte uptown light up purple on November 15 when Wells Fargo’s Duke Energy building turns purple for team Shaken, Not Stirred! We are all wearing our purple ribbons and we have more to share!

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Copyright © Gatewood Campbell, November 2012

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Amazing Grace

Amazing Grace, how sweet the sound, That saved a wretch like me….
I once was lost but now am found, Was blind, but now, I see.

T’was Grace that taught… my heart to fear. And Grace, my fears relieved.
How precious did that Grace appear… the hour I first believed.

Through many dangers, toils and snares… we have already come.
T’was Grace that brought us safe thus far… and Grace will lead us home.

The Lord has promised good to me… His word my hope secures.
He will my shield and portion be… as long as life endures.

I’m surrounded by amazing grace, reminders of God’s amazing grace everyday.

Several weeks ago I was at my Grandmother’s and I heard a familiar tune when I walked through the sitting area. There, in a reclined wheelchair, I saw lady who couldn’t have weighed more than 90 lbs. Her hair was neatly brushed and was the same beautiful powder white color of the sand I love in Rosemary Beach, FL. She had silly fluffy socks on her feet, I assumed she didn’t need shoes because she probably rarely walked without help. Her arms were folded over her body but her wrinkled hands showed her age and her fingers overlapped each other with arthritis. This little lady who sat curled up in her chair was absolutely belting out Amazing Grace! For almost a solid hour this beautiful woman sat in the sitting area and sang of grace. As I would pass people in the hallway I could see people’s faces light up as they heard her sing. I wondered about her life before she had to move into a nursing home and I thought how cool it is that God gave her the gift to recall a song about grace at that stage of her life. What fears and dangers has God’s grace brought her safely through? Her life has endured and He has been her shield and whether her mind was in the world or not she was going to sing about it.

God’s grace surrounds me. Perhaps it’s time to put on my own silly fluffy socks and belt out my own tunes. What I saw that day was an amazing picture of God’s amazing grace.

Copyright © Gatewood Campbell, October 2012

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Purpose Centers Us

I left the working world more than five years ago. It was a complicated matter, but clearly the healthiest option for me. With both of my children in school now and a college degree under my belt, I still struggle with people asking what I do with my time. Truly, some days I am so busy from the time my family leaves the house to the time the buses start rolling down the road, I haven’t taken a bathroom break. Then some days all I do is get up, walk the dog and go back to bed. On those days I am annoyed that I’m tired all the time, but I must accept the reality of my circumstances and move forward.

I just turned 39, gasp (yes Ashley, I just openly admitted my age!) and a decade ago I would have told you I would rather spend a day deer hunting with Johnny than be a stay at home Mom. Alas, here I sit, with a snoring dog at my feet, dishwasher running, clothes in the washer and dryer, kids at school and it’s the middle of the day. I never would have pictured this…surely not the dog part! At 39, I thought I would be well established in my career, although in this economy who really is at any age right? Since life dealt me some unexpected blows (pun intended) I look to the future and wonder if I will be a career stay at home Mom.

The other significant part of my attention is focused on my grandmother. She just turned 97, and though she lives in a full time nursing facility now, she is still old school southern Georgia and she likes things just “so”. She wants her bed made with hospital corners, and she is more than happy to offer training, she wants a cloth napkin with all her meals, and she puts on her lipstick, stockings and shoes every single day even if she doesn’t leave her bedroom. She has Parkinson’s Disease, but for the most part her mind is with us. Let’s face it, mostly she is just old, slow and somewhat forgetful. When I quit work I started spending a couple of days a week with her and over the years it has evolved into a different kind of experience.

Each morning at 9:15, I call to tell her what day it is and remind her what she is doing that day. She depends on that to get her day started. Every Tuesday and Friday I spend a few hours with her. I wash her clothes and even iron her cotton t-shirts just like she likes them. I polish her finger nails and I even trim her toenails (when absolutely necessary). I do her shopping and keep her favorite chocolate candy dish full. A true southern host always has something on hand to offer any guest that stops by. You will be hard pressed to stop by her room and not be offered a Hershey’s nugget! We have a routine; we have a language and a method of communication that many would not understand.

When I think about where my life would be if I were still working, I wonder where HER life would be. For the last 34 years I have lived within 15 minutes from her. There has always been a strong bond. She drove to the hospital in the late night hours when I was in labor with Justin to be there when he was born. After Johnny and me, she was the first person to hold both of our children when they were born. She even taught Hunter how to count change when he used to go with me to her apartment to help her before he started school. She also taught him how to make beds with hospital corners! His reward was one Andes mint. It was an unfortunate day when he figured out where she hid the bag. After 90+ years, what quality of life would she be having now if I were working?

I was dashing out the door for church last night and I grabbed a Bible that I don’t frequently use. It’s a smaller Bible that doesn’t have much reference material in it. I used to carry it at work and use it during our devotions and staff meetings. Last night when I grabbed the pages to flip to Acts, my hands grasped the entire back portion of my Bible and I noticed some writing. Odd, I thought since I had very little writing in this Bible. Inside the back cover I had written “Purpose Centers Us.” Hmm, interesting…. I was intrigued. I read on….”I’ve been set in my location for a specific purpose. I’m strategically placed, not abandoned, not forgotten.” Well, I’ll be! You would think there was a God in heaven that had a plan and knew more than we do right?

Stop looking, stop wondering. Know that God set me in this location for a specific purpose and I may be fulfilling it right now and not even relishing the joy of the season. The smell of the diesel school bus fumes may be fresh breeze scents to the working mom who would love to watch her kids bounce off the school bus. Fighting the most recent meal stains in my grandmother’s shirts would be a joy to my dear friend who just had to say goodbye to her treasured grandmother.

Purpose does indeed center us. So often we just haven’t taken the time to realize what the purpose really is. Maybe you are already in your strategic location fulfilling His purpose for your life now and you just haven’t clearly identified with it. He hasn’t forgotten you. When you identify your purpose you will find more joy and happiness in fulfilling His plan.

Copyright © Gatewood Campbell, October 2012

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Lucky #7

This time of the year my thoughts always turn inward. I close my eyes and seek the months and perhaps years of memories of my children that are lost in the cavern of my mind. Those lost memories make me the saddest. I wonder what I missed, what I have forgotten and I wonder what I might have been.

Seven years ago I worked up the nerve to drive to the new mall and walk around with our 2 year old and look around. I left the mall on a stretcher in an ambulance with some lingering questions finally answered and the realization that my world had just shifted forever.

Seven years later; what have I learned? Each day gets me a little closer to accepting the changes in my life. When words fail me, or thoughts jumble or I get lost, it’s an opportunity for me to accept that God sifted this through His hand and is still holding me. I have learned that everyone has a story and a battle they have fought or are fighting. I may be the only person that entire week who sincerely looks them in the eyes and greets them and says something kind. I learned to make the time for someone else when my time seems shortest and least convenient.

As I realized that this weekend marks the seventh anniversary of my epilepsy diagnosis, perhaps it is really lucky #7. In less than two months, 7, YES LUCKY #7, of my best friends are going with me to Philadelphia to run the Half Marathon. Except they aren’t just running it, each of them have joined the Epilepsy Therapy Project and raised money alongside me over the last few months. Together we have already raised over $11,000!

When I get frustrated by the what if’s, I need look no further than my front yard to the pick up game of baseball on a weekday afternoon and realize that list of what if’s would look a lot different if I didn’t have epilepsy.

There is so much for which I am thankful and yes, even lucky to have in my life.

Copyright © Gatewood Campbell, September 2012