Wednesday, July 27, 2011

Cody on his bike.... 2/14/11
Yesterday marked the 21st anniversary of the Americans with Disabilities Act (ADA) being signed into law. I feel the benefits of this law on a daily basis....with ramps for Cody's wheelchair, handicap parking and various services. There is still more that can be done to enable those with disabilities life, liberty, and the pursuit of happiness.

 Beyond the legalities for people with disabilities, there is room for  improvement in attitudes toward these extraordinary individuals. As a mother of a child with multiple disabilities, I've seen that most are very kind in regards to my son. Children in particular are typically curious about Cody and his chair. I am more than willing to satisfy their curiosity. They often ask me if he has broken legs. I've made the decision some time ago to not say "cerebral palsy" when asked by young children of what "he has"  because they typically butcher the pronunciation. :) I now say "C.P." because it is much easier to pronounce and I also think it sounds hipper.

Here are a few of the less than desirable attitudes and communications in regards to Cody's disabilities....

When Cody was nearly one, we visited a new church. We went to the information desk and when asked by the pleasant volunteer how old Cody was (to determine his placement during the service) I explained that our miracle son had some significant delays. His developmental age did not match his numerical age. He was not able to sit, crawl, stand, etc.... I took my then seven year old daughter to her class. The kind, grandmotherly volunteer escorted Scott, my husband, and Cody to his nursery class.

Some time later, Scott met me in the sanctuary. I knew something wasn't right; he seemed upset. Halfway through the service he told me what had transpired at the classroom door. After our communication with this gal, she introduced Scott to the classroom teacher and then said, "This is Cody. He has problems."

I'm ashamed to say that for the rest of service I allowed a dark cloud to loom over me. I heard nothing from the pulpit. Scott had to convince me to stay in the service and not make a beeline to Cody's classroom. All I could think was if Cody were to continue to have significant delays in life, I didn't want words such as "problems" to be the identifying adjectives for him.

Another instance was a few years ago when Cody was about eight years old. My parents were visiting us in the beautiful city of Chattanooga. We were enjoying a local tourist attraction. We had met several people that afternoon including a woman and her young son.  As we were leaving, my dad was pushing Cody about ten steps ahead when our new acquaintance walked up beside me and pointed to dad and Cody and asked, "What's wrong with him?" I sarcastically replied, "Who? my dad?" She responded with, "your son." I answered, "absolutely nothing. Are you asking me what is his disability?"  After a few moments, she was on her way.

I'm sure her intentions were good. I know in my lifetime I've said (countless) things to others that did not communicate sensitivity.

 Thirdly, while shopping back-to-school deals at our local mall Cody and I passed a couple of tweenish boys. Boy A looked at Cody and then turned to Boy B and said, "retard." Boys A and B both laughed. I admit that I nearly lost my religion in that moment!! I envisioned myself turning Cody around and running over Boy A with Cody's wheelchair....leaving tire marks.

After I composed myself, I mentioned to Cody what I almost did to which he responded with laughter. He may be non-verbal.....but he is cognitively aware.

As I stated earlier, I believe that most people are well intentioned. There are still many that will continue to mock those that often times can not defend themselves. Handicap "jokes" have become ingrained in daily life and they permeate  the entertainment industry. In recent years it has been a hot topic with politicians as well. I believe if most had the privilege of knowing a person with disabilities and seeing their perseverance, courage, kindness, etc....it would make all the difference. The longer I live the more I realize that we all have "disabilities" ... some are just easily seen.

Saturday, July 23, 2011

Perspective

In recent weeks I've had two encounters with women that were humbling, touching, and even humorous. On both occasions I was reminded that perspective is everything.

The first was a week ago with a nurse at our local pediatric hospital. My son Cody had to have dental surgery. He has cerebral palsy with a great deal of spasticity (muscle stiffness). He has been grinding his teeth to such a degree that he cracked several of his molars; the grinding is a result of  his spasticity. It was a simple outpatient procedure. Nevertheless, I slept fitfully the night before. Cody has been hospitalized before for different procedures.  It's never easy to see your child in the hospital for any reason; the vulnerability felt by any parent is always great.

After the procedure, I was allowed into the recovery room.  The room was open with a nurses' station in the center. Small beds lined the wall with one nurse per patient. The beeping and humming sounds of medical equipment filled the room. I felt an immediate sense of uneasiness; it was reminiscent of Cody's early days in the NICU. I made a beeline to Cody's bed. It was about that time that he started out of sedation. I found that my voice was quite shaky. It seemed I was performing my best Katharine Hepburn impersonation when I said, "Hi Honey." He was moaning but still managed to give me a groggy half-smile.

I noticed that Cody still had on his a.f.o.'s (leg braces). I asked the nurse if I could remove them because he can be quite uncomfortable with them while laying down. I noticed that when I mentioned "a.f.o.'s"  the nurse that was caring for the patient in the bed next to Cody looked up at us. As I began removing Cody's shoes and braces the nurse said, "I am familiar with those....we've had them for my son." I asked her how old her son was and she replied, "He passed away four years ago." I felt badly for her...I made a weak (and sincere) apology. Later, she tapped me on the shoulder and said, "I don't want you to feel bad... seeing you and your son, today, was a very good memory for me." We both had tears in our eyes. I don't even know her name. It was such a reminder to enjoy every day as best you can in spite of the challenges.

My second perspective check was on the fourth of July. We were celebrating at our home with extended family. We also had very special guests; our neighbors that live almost a mile on our road. I had never met them before but in recent months had become very acquainted with them. With the devastating tornadoes that broke out on April 27th, 2011....these neighbors (along with many others in our community) loss their beautiful home. They all survived but not without injuries. The wife/mother sustained broken bones and collapsed lung. They shared the harrowing  details of the moments before, during, and following of their home being obliterated  around them.

Cody recovering nicely with his pal, "Bunny."


Our neighbors' home the day after the tornado.
 They had dropped by because they were beginning the process of choosing a house plan to rebuild; they were interested in building a home similar to ours. As I gave them a tour of the house I explained, "please excuse the mess; we have a lot of company right now." She responded with, 'You should see my house. It looks like a tornado hit it." Her husband than said, "God downsized us." I love people with a sense of humor! Surely they will grieve the "things" that they loss and their beautiful home but they have such grace in their circumstances. Less than a mile, there were four deaths in a home that also took a direct hit. The only survivor was an eight year old boy that was found about 1/2 mile from his grandmother's house. Life is fragile and beautiful.