Wednesday, October 27, 2010

Channeling Aretha

 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


  1. Sing it, sister! You speak the truth for so many of us parents. Others never really want us to answer their questions. My all time "favorite"question is "How is Alison? Fine?". Someday when another well-meaning person who is unable to deal with our life story asks me that question followed by "Fine." I am going to tell them that clearly the conversation is over as they have answered their own question. So many can't bear any answer except "Fine"
    So, fine we must be!

  2. Sally---having worked in Rehab for so long, I have a probably better-than-most idea of both the work involved in the day-to-day life and the joys of it for you, Maggie, and the rest of your family. I have the utmost respect for all of you and your amazingly positive ways. I apologize if I have ever said or done anything to make you feel otherwise. Yours is an incredible, loving, wonderful family. Thank you for sharing with us.

  3. I love this post. I think it needs to go on the Hopeful Parents website. I also want to refer people to it on my own blog. Would that be all right with you?

  4. Amen and well said. Thank you, thank you!

  5. Fantastic post Sally. You say it all so well, and respectfully. I'm sorry for the comments, pity and platitudes that have accumulated over the years. Good luck to you and Maggie tomorrow -- I was so sad to read that she's missing the Halloween festivities.

  6. So true. I love the people that ask "How is Emily doing?" and then when I say "Fine" because it's easy, they nod. Yes, I thought so. She looks great, look - she's even smiling.

    The girl smiles in between seizures. In between gagging/retching/puking fits. In between her 28 doses of medications, 6 catheterizations, and 5 tube-feeds a day.

    She's fine. And if you EVEN tell me you undertand, I must be stressed, how do you ever do it ... I will just smile and nod and walk away. :)

  7. Visiting from Elizabeth's.
    I completely get it.
    Well done.

  8. Here from Elizabeth, and throwing out my good vibes your way.

  9. It's an important, complex and in some ways subtle subject. Having been at this almost three decades now, I no longer wonder at the lack of knowledgeable respect. The worn truism that people who haven't walked this path simply don't get it stubbornly endures and proves itself over and over. I have family members and friends who are sharp observers, but since I'm usually under the obligation to make things look easier than they are---partly to avoid any unspoken messages to my daughter that she is a burden---and since observing is very different from experiencing, they don't get it either and truly respect neither her work nor mine, compared to how status is accorded in the NT world. I in turn don't really respect their lack of understanding, despite knowing I'd be the same or worse if I were on the outside of this situation. Even the extension of deep and true courtesy from the world at large would be an improvement, one I can sincerely return in kind. And real courtesy includes attentiveness to truth that doesn't have to be
    distorted into "Fine" or dismissed as stress.


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