It has been a little while again since my last post, and again I apologize. Summertime is full of action, and it seems harder to find the time to post. We have been enjoying as much time with my stepson as possible. He is such a source of strength for my husband. When he is here, Tim pushes so hard to be able to do activities with him. They are two peas in a pod, and it is absolutely adorable to watch them together.
Although I am still working about the same number of hours, I have backed off on my daily work some lately because of working on my book. That means less regular income, but it also means that my book is not adding additional work hours on the days that we have my stepson. I usually still work a few hours each day when he is with us, but I try to adjust my schedule so I can spend as much time with him as possible when we have him, and then I work more on our days without him.
Despite the working and the fighting for my husband's rights and the waiting on him hand and foot when he has bad days, putting my stepson at the top of our list of priorities has apparently led some individuals to putting my husband and I down for not having regular full-time jobs outside of the home. When they see how much time we spend focusing on my stepson, they decide to tell others that we are lazy and don't work. So, to set the record straight, I work an average of about 50-60 hours a week. No, it is not in an office building somewhere. No, I do not have to stick close to a set schedule that a boss gives me. No, I do not put it ahead of my family. My husband and stepson come first, so I work on hours that interfere with them as little as possible. I spend long days working when I can, making up for the days that I need (and want) to focus on them and devote to them. In addition, my husband has days where he can take care of himself, but he also has days where he cannot. The cousin of one of these naysayers even mentioned recently that she was impressed with how healthy my husband looks now that he has been married awhile. She said he was too thin the last time she had seen him, which was before I came along. True... he was. He got down to 125 pounds (he now weighs 180). When he cannot get out of bed, I take care of him. When he lived alone and could not get out of bed, he just went days without eating. Being his caregiver does not mean that I must do for him all day every day. He has good days. But it does mean that I must drop everything to take care of him on his bad days, which some weeks can be a full-time job in itself. In addition, I scratch, dig and claw through VA policies and mess trying to find all the help he needs and deserves. I make contacts, I read and read and read, I apply and reapply... and the list goes on. As far as daily duties, there are many that I will not mention out of a desire for privacy that go far beyond duties that the typical wife must do. Many other wounded warrior caregivers understand the time and work that goes into this, but people outside of that community have no clue. Even other family members have no clue. I do not talk about most of it, nor does my husband. I tell just enough to try to help other caregivers going through similar situations, but I leave out enough so I do not place a burden on those we love. To me, everything I do to take care of my husband is therapy in itself. I love doing for him, and I love finding solutions to his problems. When I feel so helpless in terms of his pain and struggles, it makes me feel good to succeed at finding a solutions to problems and helping make things a little easier for him. So none of it is a burden to me. I enjoy it. But for those who will classify either of us as lazy, try being a fly on the wall for one day. You have no clue what goes on in this household.
Now on to my husband....
A day in the life for him, even without severe pain, is much different than the average person. Going to school full-time for him is far more demanding than the average person's full-time job. Imagine the cloudiness and confusion in your head when you have had to take strong prescription pain pills. Now multiply that, and throw in traumatic brain injury. At 41-years-old and with all that going on, try going back to college full-time for a degree in a computer related field. He does it, and saying his hard work amazes me is an understatement. This man spends far more time on his schoolwork than most people spend on a full-time job. He does not have the liberty of going into a shiftwork position for three 12-hour shifts a week. He works throughout the day almost every day of the week. When we have my stepson, he gets up early to work on it, stays up a few hours late, and squeezes some in the middle when he can. Even on those days he works about 5 or 6 hours on it. Days without my stepson can be 8 to 14 hours of schoolwork. No, he does not have a "job." But to anyone who says he does not work, I say that he would take your 36 to 40 hour work week at a normal job ANYDAY over what he does.
I apologize for the rant. When people speak ill of me, it does not hurt me. In fact, it only motivates me to work even harder to make complete fools of them for saying those things. But when I see what my husband deals with on a daily basis, and then someone tries to put him down, I must stand up and speak. I must set the record straight. I love that man with all my heart. But much of the love I have developed for him over the past year has come from the way I have gotten to know him. He does not speak of his struggles, and until he and I got married and I started working primarily from home, he had experienced those struggles completely alone. He does not share most of them with others, and he never even shared many of them with me. It took me living with him all day every day to learn of them. Even when we were married and I worked outside the home, I had no clue what he dealt with on a daily basis. Learning this, seeing it first hand, and then seeing how selflessly he pushes through it with everything he has inside of him, has made me develop a respect for him unlike any other. Going into work every day at a regular job is a dream of his that will probably never have the opportunity to come true again. Work... your shiftwork... your days off to spend as you please... your clockwork routine.... would be a much welcomed privilege for him, and for me. So... lazy? Far from it!
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