Anyone who has been reading my posts for a while knows the incredible amount of work taking care of Maggie involves. Maggie’s physical needs require specialized care 24/7; but managing everything to meet her physical needs is another 24/7 job. I do both jobs and then try to deal with the rest of my life. Not everyone can do what I do.
Admittedly, I have help with the first full time gig. The nurses work feverishly while they are here. Often they need my assistance, but without them, we could not keep Maggie at home. Even with that help, though, my plate is extremely full and my freedom is extremely limited. My life is not easy, but it is very rewarding. Am I looking for kudos? No. Am I complaining? No. I am simply stating the obvious.
Though there are thousands of parents similarly situated, society really does not have a convenient slot for us. We are in between slots. Though the focus of our life is caregiving for our children, we do not really fall into the “stay at home mom” category. But we don't work outside the home so we are not professionals either. We are knowledgeable unlicensed medical providers and social workers.
We are often exhausted and stressed. This is the one category that people apply. Always. Any justifiable complaint or concern we raise is immediately attributed to the stress we are under. Yes, we are under stress, but sometimes - just sometimes – there might be something more. Having someone decide that the stress of my “situation” is the only driving factor in my life disrespects me as a person as well as the hard work I do every day. That disrespect is difficult (or impossible) to tolerate.
One thing I do expect in my life is respect. Respect the work involved and for the effort expended to lead a “normal” life, despite the limitations. Respect the fact that I do not have the same freedom as other people. Respect the fact that even though we make it look easy it is not. Respect our positive outlook. Though the water in the glass is tilted a bit because my life is wildly out of balance, that glass is more than half full. Respect the fact that just maybe you just do not know everything that goes on in our house and our lives and your suggestions and comments are not appropriate. Most of all respect Maggie for the incredible person that she is.
Generally, we are respected, Maggie and all of us. Sometimes, though, all of that effort is for naught. Well meaning but ill-advised acquaintances extend pity or platitudes, make unwelcome comments, give inappropriate advice or take advantage. I get that they mean well and I get that they do not know better, but it is tiresome. After all this time, some should know better and not making the effort to understand is itself disrespectful.
Ghandi said, “be the change you want to see in the world.” That means if I want respect, I have to be respectful. All I can do is try my best to maintain respect for those who do not show respect for me. Honestly, that becomes more and more difficult with the passage of time. This may come as a shock to some of you, but there is a slight possibility that Ghandi was a tad better person than I am.
If I can’t be Ghandi, I’m going to have to identify with another icon. Sing it Aretha http://www.youtube.com/watch?v=6FOUqQt3Kg0&feature=player_embedded