Love being mom and privileged to be married to my husband as we worked hard to raise both our sons- so much gratitude and love . My thought today is to be happy and content with what you have or maybe what you had and not to think about those things you do not have or may never have. Our life is now. These are the best days of our lives.
It has been a very long time since I posted anything here. My reasoning was that we had some family concerns. I lost my youngest son to suicide just 3 years ago and I miss him every day. I was also unable to write for several years leading up to his death because not only did I work full time out of the home, but I am caregiver to an adult son with Muscular dystrophy. , as well as tried to help make sure my other son was doing ok. You can find out more by checking the recent film Brothers by my son Michael Norton and filmmaker Reginald Groff which has a Facebook Account (Brothers Documentary) The trailer for the film can be viewed on the Facebook page and we are still raising money and entering film festivals. It has been a very long road for our family. The journey of grief is never ending , like our journey in life. I believe my mission will be to speak more and raise awareness about those with brain disorders as well as those with physical disabilities. Thank you for following my blog and I apologize for taking so long to write again.
We all have them. Sometimes it doesn’t even mean the outcome will be better. I would tradeoff work, to be home taking care of what is most important to me. At work, though I am compensated well, I gain absolutely no satisfaction. In fact, I don’t feel it matters if I am there or not. That is a sad way to spend 37.5 hours a week at the place where I make a decent living wage. My tradeoff is money over my own choices. I have done this for 18 years now. Coincidently, I am also a full time caregiver. This job is demanding but more meaningful in all aspects. There has been a tradeoff there as well. This son would like to live on his own, however I don’t have the money to pay for 24/7 care, though I do have an amazing friend who has done this for her son. She works full time and her tradeoff is that she has the freedom in her own life which does not involve care giving, but all of her income pays for his independence. This is such an amazing gift and she is a strong person. Care giving has taken a huge toll on me, and being sleep deprived is the worst effect of those many years of care giving as it has affected my cognitive abilities and affected me physically as well. It has affected my work and my creative endeavors. For instance, this is the first blog I have posted in a year. That is the tradeoff. I find it unusual that I have never seen a sleep study done to the effects of sleep deprivation from many years of care giving. I have read many sleep study reports. My son is active with an interesting life, gets out as often as he can to always be around others. His options are limited. We would all do anything for our kids, that they prosper in all ways, financially, physically, emotionally and socially, and not in any particular order. I think family has been the most important aspect of living at home, as visitors come often to see all of us. Some of my family has been so supportive as well. I am fortunate to have a wonderful family. As a woman, also a mom, I have learned about so many things like acceptance and forgiveness and gratitude. Most of all, I am humbled by the people I have met in life as everyone brings something to the table through their own experiences, My own experiences are worth sharing to help others. We all have tradeoffs and we all have something to share. Maybe we need to revisit our tradeoffs and continually tailor them to find us the balance in life we all need.
A human figure emerging from the darkness, I only witness because the light from my headlights caught the edge of his profile against the dark woods. He was carrying something and I thought it might be a sleeping bag. As quickly as he caught my eye, he disappeared in my rearview mirror against the blackness of the night. It all happened so fast, the thoughts in my head, of a man in the darkness, who probably slept outside in the most brutal winter I can recall. I thought about what I could do, without getting too close or invading the man’s privacy. I did not want to appear disrespectful in any way. Maybe he lived with some form of mental illness, perhaps schizophrenia or bipolar. I felt badly for his situation. I thought he is someone’s father perhaps, and a son, and maybe even a brother. No matter what people think, most likely his family has tried everything they can do to help him. If in fact , he lives with a serious illness of the mind, I can almost be certain that his family has tried everything they can to help him. It is a sad situation that our society has so many living on the fringe. It is also hard to see people endure these difficult circumstances.
He was in a business area of town on a wooded road lined with Walmart , Lowes Home Improvement , Texas Steakhouse, and so many other large franchises. He didn’t fit into the hustle and bustle of shoppers so he traveled at night, I assumed. After I left one of the stores, I glanced around for him, but he was gone into the night.
Then a few days later I saw him again, only in early morning hours within the same vicinity only closer to homes rather than businesses. The rush hour traffic just passed by this man on the edge of the road, colorless, all brown with his blankets and his clothes as I saw him turn around and stare momentarily. I noticed he blended in with the bare trees. It hit me with sadness that he blended in. I am glad I noticed him not once but twice, and I wish there was something I could do. He is someone’s son.
It’s over, the Strike, since a few weeks now. So why am I so angry still? Four months is a long time to go without pay, no unemployment, no heating assistance in the coldest winter for years, and relying on the local food pantry to supplement our home. I would do it all over again, because we were being forced to accept less pay and slashed benefits, frozen pensions, and basically it came time to stand for something. I met some amazing people on the strike line. Strangers brought us food and coffee and pizza and KFC. The strangers were nice. They seemed to be sympathetic to our struggle with a company that referred to the former employees as “Resources”. The replacement workers were by far a better workforce in the company’s eyes. They were also compensated far more than we were. The company paid 60 million to not settle with the Strikers. The online public was very different. They were very cruel in their comments, and never hesitant to write that we should all lose our jobs. I would never respond to any comments online, because it was a waste of my energy, and I was running out of steam as a Striker. Though I needed to be at the line because those were the only people who truly understood what happened to us, and we struggled together but also had a lot of laughs together. In fact, I had people say to my face that we should all lose our jobs and be replaced with workers who wanted to work. This was what initially made me so very angry. I was very argumentative with people I thought would understand, but obviously they did not. This public face had contempt for the Strikers. We were a bunch of bad asses. I find it a sad state of affairs. I am still angry. When will I stop thinking of myself as a Striker? My anger is perhaps something I held onto in order to have some control over a lousy situation. Maybe referring to myself as a Striker, is somewhat nostalgic as well as negative. The company was constantly blaming the Strikers for any acts of vandalism and filmed us constantly. I was disobedient by snapping over 3000 pictures during that four months. I felt the need to document something which was bigger than our own struggle for good wages and good jobs in New England. I would do it again. I would walk the line with my coworkers. I never wore my pajamas all day in my entire life, but I must admit, I did that a few times near the end of the long four months. We were very cold walking the line the last couple months, but thankfully a local labor council supplied us with propane for our propane heaters, which was especially good when the sun went down. It has been a brutal winter. One coworker lost all her hair, and others were diagnosed with cancer, and of course, our health benefits were gone. My own family was affected by a wheelchair denial because we no longer had insurance. Compared to what my coworkers who had health issues faced, my issue was minimal. To be honest, I was glad to be home during that time, but I had no real routine. That was the risk involved, going on strike at midnight Oct 16th, . Nobody knew what was in store for any of us. We took a chance while our unions continued to keep us updated and fight for us to get back to work. Strangers and unions across the country continued to add money to a Solidarity Fund, to aid families in need who were maybe denied for heating assistance locally, and who struggled with mortgages etc. I met coworkers I had never met before. Our unions met with us and told us that we had our jobs back and the strike was over. On the morning of Feb 25th, we walked into work together, and we all felt the same, very uneasy. We walked to our desks, and you could hear a pin drop. Managers welcomed us back, and a sign with the words “Welcome Back” with a smiley face, appeared to be written in pencil, halfheartedly. I am not sure anyone felt welcomed. It was rather historic, as it was the longest strike of the year. We were very appreciative that we got our jobs back, but there were many changes. We knew they did not respect us and we knew they were not our friends. We are all different now because of the experience.
My anger is still there….and I hope it goes away soon because it makes working at this present job, very difficult. Some of my coworkers did not come back to work, and some left to take jobs elsewhere. I am different. I no longer enjoy going to work, but I will work very hard as I have always done. I have always been self directed, and creative, and a problem solver. The Strike knocked the wind out of my sails and I don’t know how to remove myself from these feelings. Each day it seems to get better, but my future as an employee at this company, may be short lived. I feel as though I have many things I want to pursue. Without a talented workforce, a company is merely a skeleton. One word:. Google. Now that is innovation and creativity
These Rob us of Living our Lives
I had an appointment the other night. When you are a caregiver, sometimes juggling schedules is done hour by hour. Having a family member in a wheelchair and another family member with other needs, I try to do what is best for them. This appointment was something I was committed to. Asking one family member if he might sit with the wheelchair bound family member for 2 ½ hours, would have made for a stress free evening. This would not be the case.
One wanted to visit a good friend who needed a good friend, while the wheelchair family member would be home alone, with access to the computer, so communication with me, was all set. Normally, I would be sick to my stomach about leaving the wheelchair person alone, however, tonight, I looked at it from another view. I decided to say it would be fine, because it allowed for the independence of both family members. That was very important, and I did not dwell on the “what if’s.” I felt truly free. The world did not end that night.
We have all had bad things happen to us, and sometimes we just do not know what to do with that information. I guess it depends partly whether you are an introvert or an extrovert. Some people can sit with information and come to some peace alone. Others need other people who will just listen and let the person talk. Maybe, some learn most by the reactions they get when they share. Perhaps, it is different if the news is about you or if it is about a family member. Either way, sometimes sharing information makes you vulnerable to unsolicited comments, or seemingly callous comments , and worse yet, to be disappointed because a friend you have know forever, just was not ready to bear the burden of your sharing. When husband and wife are in disagreement about how and what to share, it sure complicates a marriage. The bottom line is that love is at the core of all of this. Sometimes the people you thought might have been most supportive, just were not able to do it. That hurts sometimes, and sometimes causes anger and resentment. Looking back on the times I have shared, and there were many instances that I should not have shared, I have come to realize it is not about you. It is about the person who heard the information, and their comfort level with the information presented. It doesn’t mean they do not care about you, or that they do not love you. If you were shocked to hear the news you want to share, imagine how they felt when you shared? Sometimes, waiting may be a good idea, when you are ready to share, and keep the person’s best interests in mind, if it happens to be about a child’s illness or someone close to you. Also, it might be best not to be too specific about the name of a diagnosis, or the prognosis. People sometimes can pry for too much when we are vulnerable. I have seen people interviewed for television when they were clearly not ready emotionally, regarding an ill child. If I should be the recipient of your sharing, I promise I will try to be a good listener.
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It occurs to me that the people who have the least to give, do so generously. I have seen this time and time again. Though I have no scientific data to back up my belief that those who have little are more charitable, I must examine this phenomenon.
Does charity begin at home? In a sense it does, because if you cannot support your own family, you have no business handing out your dollars to others while your family goes without the necessities. It is an old saying and it is perhaps the best way to measure whether or not you are able to give to a charity financially. I have not always had money to do this, so over the years, I have donated goods I have made for auctions, and I have donated my time. I am a firm believer in looking outside your own problems and realizing that sometimes others need help too. What do I expect in return? I guess that would be my next topic.
I have been involved with many organizations throughout the years, volunteering many hours and trying to make a difference somewhere. They were all organizations I believed in or I would not have spent my time. I was with the Boy Scouts for 6 years, volunteering my time with kids in our neighborhood. They were worth the time and it was well spent. I moved on as my kids grew, making room for others to be involved. I have been involved with non profits and spent more time than I maybe should have, however, it was what I needed to do at the time. I have been involved with other groups and if I felt my time was not making any difference, I left the group. After all, if you do not think you are making a difference, then move on to something else. Your time is valuable.
Whenever a tragedy hits close to home, people rally together and the money pours in faster than anyone could count. Is this because we feel like we HAVE to do something? Does it make us feel good to do something? Our communities are full of people in need, yet we never see them. They are there, just under the radar. Maybe we need to take notice of our neighbors, and really see them and listen to them.
It seems that those who are in a higher class in society like movie stars, politicians, athletes, scholars, and CEO’s sometimes are far removed from those who are in the lowest class financially. I am beginning to think the common denominator may be that those who are most giving are closer financially to those who have less. Maybe charity brings out the humanity in all of us.
The topic of charity arose when some of us on Face book sent packages and helped raise money for kids in another country who also are part of our Muscular Dystrophy “family” worldwide. They share many pictures and it is more like pen-pals in a sense. One can tell that they live in a poor country and the infrastructure is so that the electric grid only lasts 12 hours approximately. This allows one person we are friends with to access Face book and be connected to a family worldwide who is willing to reach out and help if possible. Mind you, this is no professional fundraising organization, but a person with a big heart trying to make a difference to the people he helps in his country. Maybe I am naïve, but I will always believe in the goodness of people. By the looks of the makeshift wheelchairs many of the boys have, and many are ill fitted to their bodies. Americans have motorized wheelchairs. I have not seen anything that extravagant in this country with the pictures that have been shared. I see young boys who do not have the same level of healthcare that we have, and with an electric grid only working 12 hours, they will never have the use of ventilation, or machinery such as cough assists which could save and prolong lives. Their wheelchairs lack headrests, even for boys who can no longer support their trunks and their necks. Most boys appear happy in the pictures, but their quality of life is very different. The gentleman who helps to run the clinic, with a physical therapist and have a place where boys can go during the day, is also one who has muscular dystrophy.
I guess I am glad I am not overly skeptical; because I would never open my heart and try to help anyone if that were the case. I have spent my own money to put together a package or two and may send another one. I mailed one package which cost 50 dollars, more than the contents were worth, but I do it because maybe I can make a little difference. I don’t expect any returns, any praise or tax deductions. But the world is changed one person at a time. Treat people the way you wish to be treated. One of the pictures shared, spoke volumes to me. It was a photo of a mother standing and she was holding her adult son on her back. He did not have a wheelchair, so she carried him everywhere. That photograph told the whole story. That photograph is the reason I have tried to help a little.
So I guess I am just wondering what makes you reach out and give of yourself? I think those who are skeptical may be less willing to help someone. I don’t think most who are in need would ever ask for help. I think it is our moral obligation to do what we can if we see an opportunity. I believe they call it humanity.
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