Leo gave me the nickname Robo Mom a long time ago. It is our attempt at laughing off the seriousness that faces us each day. Robo Mom, Batteries Included, we just need to laugh it off. Who wants to constantly think about how important that picture above is? The picture above is my back from 2012, my old SCS system. The tiny dashes along the spinal cord are the electrodes and the big thing by the hip is my battery. This x ray was taken before my last two surgeries back in March of 2012. It shows that the electrodes were slightly, like a hairs width, off center and the cord was slightly bent. What did that mean? It meant my electrodes were not stimulating my nervous system, instead they were stimulating my back muscles. Imagine putting your finger in the electric socket and that is what my back felt like. It all happened in one swift moment that had me clinging to the dinning room table with tears running down my face as I was incapable of moving to turn the damned thing off. What does Robo Mom mean? It means I need this piece of electronics to work correctly so I can take care of my family.
Robo Mom. Yes it is a joke to break the severity of my situation. I have never really been hard core with telling people about my RSD, yes I write in this blog but my awareness campaigns are actually soft compared to how hard this disease really is to live with. Two years ago when the SCS stopped working correctly it felt like our world fell apart. Robo Mom couldn't operate at her normal speeds. I became more like "couch mom" or "in bed all day Mom". It was rough on everyone. My pain was so bad that I could barely wear pants because of the pain and my leg swelled to twice it's size while being red yet freezing cold. I was doing my best to hold it all together while taking care of a toddler that had a speech disorder. My oldest sort of fell through the cracks, we are ashamed to say. He was at an age of independence and we expected more from him. Long story short the emotional weight was too much for him and his school work took the hit. Then last year he was identified as having a learning disability. It was a tough time to get through.
Honestly it feels like the last two years have been beyond difficult. These two years have felt more like a lifetime but some how we are still standing. As a family we are tighter than ever. Robo Mom is back on track. I will always have RSD, that is a fact of my life. I will have bad days, weeks even months yet I will always keeping moving forward. I need to take precautions to make sure my SCS does not get broken again which is another fact. There are a lot of things my RSD can take away from or make harder for me. Still, I am a powerhouse of a Mother, that is a fact! My children have special needs that do not wait for Mommy's pain to get better. I have to be strong even when my pain is overwhelming. Some things can slide by in life, like dishes and laundry but my children deserve a Mom that is there to advocate for them.
I have many people in my life that do not really know what I live with. That is my fault as I do not broadcast "Hey I have a physical disability!" when I meet people. Many years ago I did work at hiding my disability. People are not always supportive when they hear about it. Since I have started writing my blog I have noticed that more people are affected when they are able to see the facts. Mostly I blog to help spread awareness and to help others in their early years of RSD feel less alone in their diagnosis. Still, you cannot dispute the severity of this picture. Who would want this in their back, next to their spinal cord? Who would be okay with a surgeon removing bone from the spinal cord just so this device can be fit into it? How many people would welcome a battery that is implanted in a pocket of tissue at their hip? Honestly you would have to be in severe pain to consider a surgery like this. Then to have it done repeatedly as it breaks and causes pain! At the same time you are a Mom. All due respect to Dad's but Mom's have more responsibility with their child's day to day life. Add to it I am a Mom with a child who has special needs and a child who during this process was identified as having a learning disability. These are children and as children their lives revolve around Mommy. If Mommy is not well then the children are affected. Mom then has to make sure her children are protected. Yes, that is a lot of weight! Robo Mom can handle it all!!! I believe most Mom's can do what I do they just never have been tested yet. I do not like to think I really do anything spectacular. Yes I have the SCS in my body but at my core I am just a Mom. I am just a Mom who advocates for the best her children deserve from herself and others. Sometimes some people need to see the hard core truth like the picture above to soak in the reality. It is nothing extraordinary because it is my ordinary life.
