Sometimes I feel like two people. There is the real me, and there is the me that has to defend the real me...the public me.
The real me is pretty damned happy and satisfied with life. Of course there are challenges such as D's health and such. But overall, I'm loving this time in my life and I love how my family is thriving.
I love getting up in the morning and greeting the kids with a "Good Morning!!" and seeing their happy smiles. I love giving and receiving our hugs and kisses and dressing them in cute clothes for the day and watching as they clumsily comb their hair and brush their teeth. I love working with them as they try to spoon their own cereal into their mouths and eagerly keep trying while I sneak a little spoonful of my own in their mouths. I love either taking them to the gym day care and watching them bounce off and play or just playing at home. I think we have struck a good balance for our 'school time'. They have as much freedom as they want and are usually very excited to do one of my planned activities (usually from Montessori Assistant to Infancy texts, "Slow and Steady, Get Me Ready", or made up stuff). If they don't go for something, I just drop it and go on. I love watching them get so excited to learn something new and want to know what every thing is called. Yesterday, we did a little tissue paper collage where they stuck precut tissue paper on a pre-stickified shape like a rainbow or a butterfly. It was amazing to watch them as they started to figure out the idea and actually get into the process. I love how our routine works so well for them most days, that they start coming up to me and telling me when they are ready for lunch or nap. I love that when we go to restaurants, I can sit them in highchairs with a few activities or a snack and they act like perfectly acceptable human beings. (So far!). I love taking them to the park or to play in our back yard and watching them touch a flower and say/sign "fwah ah". I love that I've been able to work with Aaron for just a few minutes each day on physical therapy exercises and the kid who never walked and would noodle out on me when I tried to get him to walk can now walk all over the place (even outside) with me only holding one of his hands. I love that they love to sign. I love that they are trying new foods and I am trying to experiment with making them new foods that are both nutritious and that they will eat. It is great now when I can make a whole meal for them that they can feed themselves and I can sit back and eat, too. I love all of our little routines and games we've come up with that make them laugh. I love reading them books as they point and tell me what pictures are coming next. I love the half-hour before bed when we just chill out together and watch a Baby Einstein or Signing Time video (their only TV for the day.) I love watching them dance to music, I love watching their different personalities emerge. I love being a parent.
That is the big role in my life, but I love that I have still maintained a foothold in the disability advocacy community. And that I am still able to keep up with politics and carry on an intelligent conversation that doesn't involve my opinion about attachment parenting or diaper changing. I still have people in my life that are available to discuss a wide range of topics.
I love that I have worked a way to live a very nice quality of life on not very much money. And that I have so far been able to work a bit and keep the kids with me for the most part. I like the fact that I know that with a good working computer and my education and experience...I will be able to find someone, somewhere that will throw me some work. I've always been able to find something. I know my choices wouldn't be right for everyone, but right now, given what my limited options are...I feel that I've done my best to make what could be a bad situation very livable and good. I like being able to live within a budget, and still be able to give the children quality nutritious food, decent health care, a decent home in a decent neighborhood, clean, cute clothing, and appropriate toys to keep them challenged. I like that I have the expertise and sense to carefully select what store bought toys are worth it and which ones are total crap. I have been able to pick out good stuff for decent money, and then make a lot of the kids toys out of household junk. I like that I know how to make due with what we've got and not waste money on crap.
Despite my own confusion with the church, which I am determined to somehow work out a resolution to eventually...I LOVE our director of religious education and I like having my children in the program (albeit only the nursery right now.) I like teaching in the program, I like the kids, I like having to teach myself the curriculum so I can teach it.
I am liking that after sort of laying down my needs for D and after he got free of the nursing home, that we seem to understand each other and are on the same page for the first time in several months. I love watching the kids interact with him, I love when he just comes over and takes over feeding them, I love the fact that I knew we could work our way out of our jam, even when I was in the middle of being so heavily frustrated by it. I know this pressure sore thing is not over by a long shot, it is likely to get worse before it gets better, but I like that we can try to deal with it and not make a big dramatic thing out of it and just go on with our lives.
I like that we are disabled parents. I like that my kids are going to grow up knowing some diversity and having to live within a budget. I like that we are going to be examples for them of what a person really is...past the appearances, the money, the material things, the ability to be cool, the shallowness that some people of privilege get caught up in. I like that they will have to learn where value comes from within each person.
All of these things, I am incredibly happy with. I go about my day so grateful to have two happy, healthy children. That all I've worked for all these years finally seems to be coming together. It is not at all how I planned it, but all the essentials are there. I'm living happy days for the most part.
But then there is the other life I lead, the defensive one. The public one. As much as I try to let the real me just shine on and become a public example of what is going on in our lives, I find it very difficult. I am just constantly bombarded on a daily basis with negativity and questioning about my family. Even when people mean well, like many of them do, their questions are just so loaded with judgment. I'm not going to go on a rant here, because if you look back at some of my other posts, you'll get the idea of what I'm talking about. But here is an example:
The other day, a well meaning person asked me what preschool I was going to send the kids to. I said I was going to keep my options open, but right now, I very much doubt that I will send them to preschool. Preschools cost mega money for things we can do at home and in our community. I don't have anything against them, but I don't see paying over $1500 a month for two kids to go to preschool to do things we can do at home or around town. This is a personal decision, I'm not judging anyone else for putting their kids in preschools here. And it may be that I find something for a half day, one or two days a week that will be worth it. But in general, I don't believe preschool is a requirement when you've got a mom who is a trained teacher (or even a mom whose just willing to talk to, teach, and read to a child) and about twenty billion low or no cost community and park and rec activities the kids can do.
Well, you would have thought I was the most irresponsible, loony mother out there. "You HAVE to send your kids to preschool!" And, no, she didn't spout off statistics about how preschool-ed children do better in school or whatever. She said that she thought that I would want my kids to spend as much time with 'normal' people as they could so 'being exposed' to disabled parents would be limited and thus they wouldn't have to face the hardships that come with that.
See, the thing is...I have to deal with these comments ALL. THE. DAMNED. TIME. D's father sees me as somehow whipping myself and then wondering why I bleed...but he doesn't know how it is to be us. My goal is not to put on an elequent and graceful show for everyone; my goal is to be understood. I know D and I are supposed to play the part of the inspirational and admired disabled people who overcame our disabilities and pass in the real world just enough to make everyone else feel good about themselves. We can't be too accomplished or then we would belittle their accomplishments (i.e. make something appear 'so easy a blind person could do it.') It is a part we are expected to play. Don't have political opinions. Be grateful for accommodations and don't demand anything when they aren't there. Be 'special.' Be willing to gracously answer any personal question that they would never ask a nondisabled person from how we go to the bathroom to do we have sex? It's all okay as long as we stay in our places and don't expect too much out of life. For some people, that means that we shouldn't have even thought of having kids. We don't have the luxury of meeting people with that lovely facade that most people have. If your family looks like everyone elses, you can go out in public and put on this lovely, normal persona despite whatever your challenges are. If your family looks a bit different and presses on the political hot buttons of total strangers, there is no chance to put your best, most elegant self forward. People are sometimes already on the attack before you even open your mouth. Even when they don't see themselves as being judgmental or negative towards us, they are making assumptions that they assume we share, that our life is less valuable, lower quality, less worthy to raise children, selfish to bring children into the world, whatever. Their is a antifeminist componant to this as well. It seems that it is much more acceptable to some people to have a disabled father/nondisabled mother. But a disabled mother? Especially in addition to a disabled father is all kinds of bad in some people's eyes. So, my job instantly becomes that of an educator, because that is the only thing that is ever going to make it better for me and my kids. And I'm usually in public, often with a group of people. And I can't go telling off everyone at the drop of a hat. So I have to smile and play nice and say something that is the perfect amount of informative, graceful, and diplomatic. I can do this, and then just shrug it off...but it wears you down. It wears you down so much that even though intellectually you know that most people are not judging you, you suspect that every interaction you have is going to be like this. It wears you down so that you do start questioning everything you are doing, even though in your heart you know you are doing fine. It wears you down so that you feel yourself being put in the position to justify and prove your every move and decision. It wears you down so that you start even avoiding social situations. So, in my public life, I've become sort of this quiet, aloof, paranoid woman who is just too tired to deal with people. And that, in turn, confirms some people's beliefs about me. They see my frustration and exhaustion with them as me being frustrated about my own disability instead.
It is funny that people have such animosity toward single parents, poor parents, disabled parents, gay parents, whoever because of "what it does to the children." But probably the main challenges that comes from being a different kind of parent is dealing with these people. They are the ones making it hard, not the situation itself so much. I know they don't get that. I think there is a strong desire for people who are judging you to want to see you fail in order to validate their judgment, so they are (subconsciously?) making every effort to see that things are especially tough for you. It is like this weird, self-fulfilling prophecy they've created for you.
So, since I can't control them, I have to control me and I'm taking the summer off to reboot. Its all going to be rainbows and butterfly wings for this girl. After I finish the teaching season, I think I'm going to skip out of church for the summer. I think I am going to not answer my few emails I get a week asking me silly disabled questions. (If it is a sincere request, like a how-to from a disabled parent or something, I might answer that.) I'm not going to read the disability rag and get mad about disability stuff, just for the summer. I'm not going to watch much news and see the latest thing Bush is doing to disenfranchise the blacks and disabled in New Orleans, or the Muslims that he imprisons here and abroad and all the other atrocities that this administrations shames us with. I'm going to become blissfully uninformed (like many people spend their whole lives). I will probably still go to the gym, because, really, NO ONE
bothers me talks to me there, and the kids like the day care. I'm not sure what I'm going to do about blogging. Maybe I'll just write nice, fluffy kid's stories. We'll see. I might play deaf in the grocery store when people ask me questions. I'm avoiding criticism and stupidity at all costs. I need to just chill out and realize that there are many nice people in the world and if I can get past the judgment crowd, I know I can find them and have pleasant interactions with them.
It's all going to be rainbows and ladybugs and flowers and fluffy clouds and purple unicorns and it will probably only last a week.