Well, I Feel I Need a Little Sympathy--Stevie Nicks

First of all...Did you know that they now have JUMBO M&M's? More chocolate on the inside? Did you know that I thought of this idea when I was five years old and have been wishing for it ever since? If I would have marketed this idea in 1975, would I be a millionaire now? But that is not why I'm being all whiny right now and eating too many damned JUMBO M&M's.

The kid's are in a program called "Healthy Start," which is like Head Start for infants but based on risk factors, not entirely on income. They qualify because I am a single, lower income disabled mom and they were preemie twins. An early childhood specialist comes once a week for about an hour and works with them and is supposed to support me in being a good parent. I don't know how much I really need this service, but my blind parent friend, Nik, told me to never turn away professional people who want to see me with the kids because they will be my witnesses if there is ever a question of my disability preventing me from parenting. I really liked the woman that has been coming, but she is finishing up her last semester of grad school and had to reduce her hours and thus dropped me from her caseload. So today I got a new person, and she started off by going through sort of an intake questionnaire and asking me everything about my life.

I got around to telling her about the situation with D's foot. How he was in the hospital for seven weeks, and how now he is home and so I go over there and work, but he has not been able to come to my house and help me out because he is still recovering and trying to get a lot of things taken care of in his life; which I highly support. And how it has been 151 days since I've had a break from the kids. (She actually figured this out, real quick like in her head. I luv anyone who can do the math. So I don't have to). I have not had a babysitter in 151 days. There has been no time in the last 151 days when I have not been responsible for the children. Sure, I've had 20-30 minutes here and there when my dad would (heh, sort of) keep and eye on them while I was still in the house (Dad Doesn't DO Babysitting), and I've had a few hours after they go to bed (like now), and they spend a few hours a month in the nursery at church, but I have had no breaks and have been taking care of them for 24 hours a day, seven days a week, for 151 days. And counting.

She acted like people would be rushing to my aid with D in the hospital for so long. Nah, I said, too many accusations have been flying for that. D and I are past what happened with him sort of concealing his injuries from me, we are working things out. But I have to tell you, what he did was really, really hurtful to me for a while there. I know it wasn't an intentional thing he did to be cruel to me. It was more like some MAJOR procrastination and letting things slide out of control. But I felt like we were working together towards something; towards making a good life for the kids and being responsible adults. I mean, when I have to get up every morning and feed the kids and take care of them; I cannot let myself be sick, I cannot let things slide, I cannot forget to pay the bills so the electricity goes off, I cannot forget to make the formula, I cannot stay up all night and sleep in all day, I cannot sit and veg in front of the TV, I have to keep all of my shit together-- filed and alphabetized. I thought we were both doing that, and then this foot thing happened, and it was like...whoa, the kids are motivation enough for me but not for you? I thought we were in this together. So, even though we are working through this, it was a hurtful time.

The Healthy Start teacher had all kinds of sympathy for me. And I realized, this is the first time someone said to me (except for some comments from y'all great readers) that anyone has said, "How are you doing with all this?" "It must be really hard for you." or "Is there anything we (at Healthy Start) can do to help?"

It was really nice of her. But it made me think, "What? The only person that will ever give me warm fuzzy huggies about such a trying time is doing it because its her JOB? Everyone else who is close to the situation (and really, by everyone, I mean only a few people) does their usual thing. Blaming the caregiver for the illness. When you love someone so much and you have devoted eleven years of your life to loving and caring about that person, and even a few times, sacrificing your own needs and desires to save his life--for someone to say you caused him harm or that you didn't do enough to prevent it is just heartbreaking. I knew that this would happen when I found out the severity of his injuries (the day he went to the ER) which made it all the more painful that he would let himself slide into this situation and put me (and his home health nurse) in such a vulnerable situation for blame and finger pointing.

I have to step back from getting support from D because he needs time and energy devoted to working this problem out. And I'm okay with that. But it doesn't make it any easier that he is too busy to deal with the flying accusations from everyone (and by everyone, I mean about two people) and it is hurtful to me that I get no sympathy from anyone about this. Waaa, Waaa.

There was this study that we did at a previous university that I worked at where we studied the social lives of people with disabilities. We asked disabled people and non disabled people to fill in this worksheet which had several concentric circles on it. The innermost circle was to be labeled with yourself and your closest family members. The next circle was close friends, extended family. The next circle was casual friends and acquaintances, the next circle was business or career contacts, and the outer circle were those that got paid to provide you a service (such as your hairdresser or your accountant.) The non disabled people mostly had a pretty balanced set of circles with several people listed in each ring. Most of the people with disabilities had the first circle filled in with themselves and maybe one other family or friend, and then the circles in the middle were blank or sparse. The outer circle had the most people in it by far. Those people that are paid to provide a service for you. these people were social workers and medical staff and physical therapist and paid caregivers. All the people that are paid to give assistance to your life. It was sad that people with disabilities were so excluded from the middle rungs of the circle. From the friends, extended family, and acquaintances, the colleagues and the neighbors, the people who are the main part of life.

Anyway, this experience reminded me of that study. Sometimes, D and I are there. Only dealing with each other and the outer circle of paid service workers because, despite our best efforts, sometimes not a lot of other people want to take the time to really understand our situation or deal with us.

I've always thought that disability can be kind of a filter. People who take the time with you usually really want to genuinely be with you with no ulterior motives. So that's nice in a way.

Anyway, I don't think that I really need that much sympathy anymore. D and I know who we are. We know us. He knows I'm not responsible for his illness and I know that he is working to make some changes. That should be all that matters. On a happier note, we had a wonderful special visitor this last weekend. I forgot to ask her if I could blog about her (my new policy) so I can't tell you who she was. But, she was just a bright, funny, wonderful, rational, sane, understanding light and I wish she lived in the same town. So, really, there was the healthy start lady and this visitor and some people at church, and Nik and Kory and some of you here who have said nice, supportive things about my situation. So that is more than two people and those people are who I should focus on, right?

Right.

Comments

[Sara]

hey - what about blog readers - where do we fit in LOL!

You've made me think a lot though - that's exactly what our little guy is already experiencing. (He's got close family members, and tons of "service providers", but his friend circle is pretty skimpy.) And he's only 5 :)