Do we as bloggers have social responsibility? Blogging is an outlet, it can also be a manifestation of one’s desire for exhibitionism, but do we do it to help others or just ourselves? I think it is more complex when the blogging is for a smaller well defined community.
I sent an email to a reader of this blog the other day. I noticed she has not commented here, or some other blogs that she and I read, for a while. The email was simply …
Haven’t heard from you in a while. I hope all is well.
I figured it was non-invasive yet showed that someone cared. In part, this is what came back (reproduced with permission, and agreement of confidentiality) …
I’m pretty low. To be honest I spend most of my time feeling overwhelmed with life. Depression is never very far away. It’s complicated. My situation is complicated. I’m complicated. I wish I wasn’t but I am.
Caring for my child takes every drop intellectually(should we agree to a functional hemispherectomy or not?), emotionally and physically.
You guys in the blogging world seem to have a lot of energy. I am always interested in how others survive this difficult life. Seems to me you have to have something outside of caring for your child that keeps you going. A good relationship, friends, a job, other children, a supportive family…..
In my recipe for survival I would add wealth (enough to pay for all the support we need), and for me personally, youth. I’m 45 and having a hard time coming to terms with the fact that I will have no more children ( I’m jealous of the other bloggers who have other kids, although I know this must bring many other different challenges..)
I can sooooo understand, and identify with her much more than she knows. I, too, am jealous of those with other kids. I wonder how I survive, let alone others. The grass is always greener.
This woman is one of us, she does not have the energy or time to blog, she gets inspiration, information, and hope from us, as well as elements of despair. (I saw Elizabeth’s post as I was writing this one).
I know she will read comments here. In short, what would you say to her?
First of all, thank you for sharing this with us. And while each of our circumstances is different, those of us with children with disabilities are probably far more the same than different. And I mean that in the sense that while the life OUTSIDE of the child (other kids, marriage, employment, money, health, etc.) might differ, the life WITH the child and all its attendant anxiety, despair and emotional and physical pain is much the same. I think the way I cope, OUTSIDE of having other children, is through art (my writing) and meditation (mindfulness) and yoga and, above all, a sense of humor. I am forty-six years old and know that I should exercise more but sometimes I just can’t do it all. It sounds like you are awfully hard on yourself and I get that. I don’t want to give advice, but I will. Don’t fall into the trap of comparing the way you deal with your situation with others. Even if you have to sit in your child’s room, take a few minutes a day and meditate. Practice it — get a tape to guide you if you need it. Start there. We can always start there.
Try to draw more from people who are actually near and in-person with you. Do you have a spouse? Seek out a group (any that you share some commonality with) – does your child attend school? (Hoping SD is open to a diverse suggestion) Church, synagogue or temple.
I love the web and blogging. The support is real in the vitual world, but it will only give you so much – and then it is like money. There is never enough.
I think both Elizabeth and Barbara gave excellent advice. No matter what our situation is, whether we are married or not, have other children or not, possess wealth or not, our feelings and experiences are very similar when it comes to our disabled children. And next to our virtual friends we need some “flesh-and-blood” support system as well.
Blogging is tricky. You don’t see the whole person behind the blog, only the facets that the blogger chooses to show you. Even the most honest and open blogger will not reveal certain thoughts and feelings and emotions to the whole wide word, even if these thoughts and feelings and emotions would be obvious if you met them in person. Therefore, comparison is pointless.
What helps me personally in my daily struggles, besides the support I get from my husband and other loved ones, is my faith and my self-awareness. My faith in God and afterlife helps me to keep my current struggles in perspective, while monitoring my thoughts and feelings keeps my mind from wandering to dangerous places – or to linger there for too long. But no amount of self-awareness can be substituted for human relationships.
I can only say that I have often felt the same way. I don’t expect to be able to cope every day, I know sometimes I am not the best mother in the world, I spend hours wondering whether I have made the right desicions (and will probably continue to do so).
I try to remember that even though things may seem unbearably bad, that life is in constant change and it will not last. I just try to get through the bad times as best I can, (quite often by obsessively cleaning the house which stops my mind from whirling around at apparant light speed)
All excellent comments. I agree with Barbara on the church, synagogue, temple suggestion but for two reasons. Most of us have a relationship with a god, “relationship” being the key word. Like a marriage, sometimes you are madly in love with your spouse, and sometimes your spouse is a puke. It can be like that with God. But, more importantly at times, those institutions offer a social outlet, an hour or two (or more) a week where life may not center around your child, but time with other adults. So, god or standing in the back afterwards gossiping … both can help!
Keep up the good suggestions. Hell, I may take up one or two.
I think it is also important to remember that it is ok to feel sorry for yourself from time to time. It is only human. I think it is more healthy to acknowledge our dark thoughts than to supress them. The thing is to remember they do not define who we are, they are only a part of a whole and they will pass.
Anti-depressants. Don’t think I could function without W*llb*tr*n.
So…the father of my children married a woman 15 years younger….had another som who was not handicapped (our has Downs Syndrome) I, we have a daughter who is wonderful, she is 22 and graduated with a BS in Biology and minor in micromolecular Bio…our son who is 24 is also great he is working at Publix and likes most everyone…my problem is that their father doesn’t do much other then pay his child support for our son…I, we, didn’t have our daughter to care for her brother….but I feel I have no life…I work full-time…have returned to college; although, I cannot work toward want I want because it would require me to go to school during the day and I have responsibilties to my children to ensure they have health insurance and a roof over their head….my ex treats our son not in the best way…I have been divorced since 1998 and have rarely dated because I wanted to place my children first…now I feel that it is my responsibility to make sure everything runs fine for my son…getting to work on time for him, his Special Olympics programs to keep his circle of friends all while feeling that my wants and needs are obsolete…who else understands? My daughter has no student loans from her 4 years away at college partially because she was a great student and also because I paid her $600/mon rent plus gas, car insurance and repairs,etc…but she feels I am complaining when I feel that nobody cares that I am almost 50 and have no fun in life all responsibility…I feel so lost