Fate

Well, well, well. Life is weird, innit?

I was getting ready to write a post last night about how I have pretty much given Nik the green light to look for work in Canada. I was going to tell D about it today. We have made a comprehensive project flowchart and have started on the first few steps that need to happen before I could send Nik full force back into the Canadian workforce…which I predicted would happen in about March.

Then, I didn’t get a post written last night because my scanner stopped working and I went all out tech geek trying (unsuccessfully) to get it to work until I was too tired to write. And this morning, Nik asked me to please take the kids to school because he was tired so he took D duty. So telling D didn’t happen either.

And then today, Nik got offered a job….sort of.

It is a state job in a field that he would like to work in. It has good salary and benefits. But! The state is on a hiring freeze right now. So they are proposing to hire him part-time on contract through a subsidy program for people with disabilities. Basically, the STATE will be paying his salary through this program because the STATE can’t hire anyone right now. The idea would be, when the hiring freeze is over, he would just slide into the “real” job. So he would get paid an hourly wage that would be the same-ish rate he would get on salary, but no benefits. There are not a lot of hours now, but he could get to 20 within the month and maybe 40 within the next six months. There are RUMORS that the hiring freeze (which affects all state agencies right now) will end in March, or maybe June. Or we just don’t know. If he would get the “real” job, the benefits are pretty good.

So, of course he is going to take it. But life is giving me whiplash lately. We will basically be operating on two parellel timelines right now. One is the immigration timeline and the other is the staying here if this job becomes permanent. Interestingly, because of some beaurocratic issues, we would not have been able to really turn in our immigration paperwork until at the earliest March and the latest probably June. So weird coincidence that the rumor mill has the hiring freeze lifting at those times as well.

I don’t trust the state too terribly much. So I have very mixed feelings. There is no guarantee that this will ever turn into anything. And Nik will barely be able to feel secure enough in this lovely Country of ours with health benefits, of which now he still has none. If a bunch of funny stuff happens, and this job doesn’t materialize, we need to set a hard deadline to give up on it. We cannot apply for immigration without a lease and a job offer from Canada, not to mention that it is very costly to apply so you really need to be serious. (roughly $3000 once it is said and done.)

I have developed a new attitude about moving since September. First of all, I realize that I cannot replace what is here in PDX. I think I was trying too hard to create a replica of everything in Canada and it is just not possible. So, I have been looking at it as a new adventure and have started to get really excited about going and opening the new doors that will appear once these close.

On the other hand, even though I know that my relationship with D needs to change no matter what, I have some obligation to the kids to try to remain close if it is at all possible.  The changing that I need to do does not necessitate a new city. Sometimes a change of venue kick starts the revolutions you need to make in your life, but I can do everything that needs to be done here as well.

Besides their relationship with D, the one other thing I was really sad to leave was their school. It is unique and irreplaceable. I don’t even know if the homeschooling climate in Canada would support such a school. Of course, there are other ways to homeschool and we would have been fine there and found new and exciting things to do and learn, but their school is one of a kind and it means a lot to us. I don’t know how much I have written about it, probably some, right? But I’ll give a brief description.

A group of homeschooling parents in the early 2000′s were sick and tired of driving their kids all over for social events and swimming and classes, etc. So they decided to make a place where all the good things about community would combine with all the good things about homeschooling and would combine with all the good things about school. It is basically a community college campus of classes and activities. Kids choose what classes and activities they want to be involved in. You can go for an hour a week or spend five days a week there. There are classes in every subject taught by mostly volunteers (who get a small stipend) to teach in areas they are passionate about. There are field trips organized with group rates and special behind the scenes stuff of all kinds. There are activities such as choir, plays, debate, lego robotics, etc. There are competitions like spelling bee and Destination Imagination. There are clubs like 4H and Scouts. They also arrange classes sometimes through places like science museums or local businesses and colleges. They get group rates for online classes like Rosetta Stone. There are no age restrictions (or very loose ones. You obviously aren’t going to put a 3 year old in physics or a 16 year old in Toddler Sing and Play). Parents are welcome and participate in classes and are largely the staff of the school as you barter for class tuition by doing “Community Duty” such as assisting teachers, doing bookkeeping, cleaning toilets, organizing fundraisers, etc. The halls and classrooms are packed with babies up to adults. There are even some classes that kids can take with adults like Yoga or current events. There is stuff for adults like Homeschool support groups. There are no grades in the lower grades and then in the upper grades kids can choose an optional grading assessment. It is basically a free, democratic school where kids and families choose what they want to be involved in. Its all available, but none mandatory.

And I do have to say that I have only been able to send my kids there the last 2 years because of their very generous financial aid package that they have awarded me for the past two years. I am still required to do community duty, but they make it easy, respectful and private to apply and receive financial aid. I hate fundraising, but they make me WANT to fund raise for them. I have gone to businesses and solicited auction items, donated curriculum for sales, and even spread the word through annoying forwarded emails to get donations for this school. (If you know me, you would know that I loathe these things, but I feel I have a duty to because of my financial aid, and also…I just BELIEVE in this school.) What it gives my kids is a community to call home. After all the fits and starts we have had with the church, here is a place where my kids are known and cared for. They see the same kids each week and can develop friendships, they interact with adults who can teach them different things that I can’t and who care about them. They also interact with babies and teenagers and kids of all ages, so unlike public school, there is no artificial hierarchy.

That is a bit of a tangent, but besides D, that is the only other thing I felt was really going to be irreplaceable and not duplicable. There is a great bunch of homeschooling families in Vancouver who do a lot of different activities together, but I-as a person who doesn’t drive and who struggles with communication–would have to WORK IT. It would be a lot of work.

There are still long-term advantages to Canada for all of us, I mean, school isn’t forever and I have to look at the bigger picture.  On the other hand, Nik would likely be stuck in some call center for a while, maybe working his way up to manager in Canada. Now, he might be able to do something he really feels he could contribute at.  So, you see where this is just a total back and forth.  But I find myself in a position for once of having two GOOD paths that my life can go.

Probably, fate will decide this one. If the job is good and goes well and becomes real and looks steady…we will probably stay. If it falls through, we will go. My main goal in all of this is to manage to balance short- and long-term stability for all of us. I’m hoping that the pieces will fall where they may in the next few months and the choice will be made clear. And if life is not that nice and neat (which it never is) I’ll have enough wisdom to find the right path and the right time to step onto it.

Balance

Cheryl Colehour
(1966-2011)
Memorial Website

Cheryl was a blog reader of mine and a friend on Facebook. If you look through the comments section of this site, there are many insightful, kind and thought-provoking comments from her. She died at the end of November, but due to the wonders and weirdness of how Facebook works, I just found out yesterday. She had a story done about her in the news a while back, and at first glance when checking Facebook last night, I thought she was sharing another news link about herself. I saw her picture first, but when I read the caption, it was a memorial announcement that her husband had put up on her Facebook page. It’s a little surreal, she announced her own death to me. It hit me surprisingly hard. We never met, but had some things in common. We were both UU’s, we both were in our 40′s with young children, she struggled with Rheumatoid Arthritis and then cancer before she died. She was passionate about motherhood and her children. The thought of her leaving her children behind, Clara who is 10 and August who is 3, is just heartbreaking. The last Facebook message I saw from her was dated November 11th. The day before was her birthday. She just turned 45.

WordPress has a function where you can see all of one person’s comments they’ve ever written on your site. I filtered hers and read through them. They were all supportive and empathetic and kind (much like all of my commenters, I’m lucky that way.) But I noticed many of them started out like this:

“I’m sorry that….”

I’m sorry that your dad is being a dick. I’m sorry that D is sick. I’m sorry that the church is being such a pain. I’m sorry that…put whatever whiny thing I complained about here. It made me think, MY GOD I bitch a lot. This woman’s children just lost their mother and I just go on to complain about all of my little problems. I so, So SO need to go hug my kids and just be happy for what I’ve got, which is an incredible lot!

And although that is probably very true, I’m torn about it in a way, or I struggle with the balance. On the one hand, yes! Very much so it is important to be grateful for what you have and enjoy the moment and not get caught up in the stress of life. That is definitely something I struggle with and is a challenge to me. But also, and this is one of the reasons I blog, you have got to speak truth to power. I am a real person who struggles with real social injustices and personal challenges that are in desperate need of airing out in some kind of national discourse (I’m just one tiny voice among many whose stories deserve to be told, but still, I am ONE.) I do not want to pretend that everything is ok when it is not. But I also want to see all the beauty in life that is all around me. The balance is difficult sometimes. All the time.

What is interesting sometimes is watching the contrast between N and D and how they deal with the bullshit they are dealing with right now. D’s life is all about survival. Some of it is medical survival that is out of anyone’s control. But a large percentage of the shit he deals with is scratching through the disability welfare and healthcare system to maintain the treatment and services he needs to survive. D  lives in this parallel fantasy world of SomedaySomewhereLand. He doesn’t ever complain much about the crap he has to do. He doesn’t ever talk about joining an advocacy group or fighting for civil rights. He just plods on and scratches and scrapes his way through a system that is designed to work against him, all while trying to swim above water at the same time. He talks often about all the things he wants to do Someday…Sometime…Somewhere. It has gotten increasingly surreal in the last few years, so much so that sometimes I have questioned his mental functioning levels. After all, years of (legal) narcotics use takes its toll. But I don’t know, I think it is just how he deals with the lot he has been given. His family has always been prone to be very noncommittal to taking action while inventing their own wonderful reality. I don’t know if this is wrong. I do know that I can’t do it.

N, on the other hand, is STRUGGLING with culture shock and life in America. Growing up in Sweden and then spending his adult life in Canada, he is used to a larger safety net, a more egalitarian society, a kinder culture. I truly believe that although he has Swedish roots, he is Canadian in his heart. He will never be American. I don’t know how idealistic he is about Canada, but I do see the utter disbelief he has when he sees some of the elements of life in America. People on the light rail train talking about what hand guns they own. The stuff that went down at Wells Fargo and Oregon Commission for the Blind*, the crap that goes down here with me and D and health insurance.

Just today he had another wicked whiplash of culture shock. This morning was Avery’s IFSP review meeting, and I was trying to get the EI therapist to make a recommendation to medicaid to pay for Avery to have speech therapy once a week. EI can’t admit that they can’t cover his therapy needs because then Medicaid will say they have to pay for his additional therapy. Medicaid won’t pay for additional therapy unless EI says it is necessary. It is all about language and working the system, which the EI person and I were sort of tensely trying to work out. Nik all the sudden goes, “But it’s all PAID for by the STATE!” Which is true. So yeah, everything we are doing is a bit ridiculous. But we are used to the mental muscle it takes to work the system, We don’t even think about it. N is feeling the strain.

Another example is our home health care worker hours. My hours just got cut by 9 (about $100 a month) because everyone’s got cut by 5% for “non-essential” services, i.e. the laundry. But it isn’t like you don’t still fold the laundry and vacuum the floor, you just don’t get paid to do it. Now, we are hearing that the governor is going to cut an additional 5 to 8% in March. For N and I, that is a loss of up to $254 a month. No small change on our budget. For D and others like him, that is the loss of much needed services and makes it harder to employ good people who will stick around. It is damaging to all of our health and well-being.

But wait! There’s more! One of the reasons we took over D’s attendant care was so that N could get health insurance. He has not been insured for over two years now. I don’t know if you know how stressful that is. He can’t go to the doctor when he is sick. We end up waiting things out to see how bad they are (he had a horribly sprained ankle after a bad fall that probably should have been braced and crutched. But we just had him be immobile for awhile. And although it seems to have healed ok, when it is happening you are wondering, Could it be broken? Could it get worse? What will we do? Not to mention just the stress of hoping he doesn’t get hit by a car or get cancer or something all the time because we would be ruined and he might be dead. So anyway, he was required to work 80 hours over two months to get that. And he did that. And we heard nothing about health insurance enrollment. So he calls the state agency and no one will talk to him or return his call. So, then we find out tonight from the union organizer that called asking us to call our governor to reinstate health insurance for home health workers. The state has ended it for all new hires, although others are being grandfathered in. So, no health insurance in our future, now.

I get my usual level of snarky outrage, but also have a whateryagonnado? attitude about the whole thing. You take it and move on. N, who never has had to go uninsured or pay for health care or health insurance premiums for basic care in his entire life, is INCENSED. He thinks we Americans are all a bunch of barbarians and why don’t we just throw the poor and disabled into the gladiator pits for public viewing of our demise because they would probably enjoy it. In a way it is good for me to get that outsiders perspective that I get from N and his friends and family from abroad. They think we are all crazy and they just don’t get it. When you look at it from the outside like that, you see just how stupid it all is.

None of this, however, compares to the horrendous loss that Cheryl Colehour’s family must certainly be feeling right now. And her death was likely out of anyone’s control. It can still piss you off, but there is really nowhere to direct your anger. How fortunate are we that at least when dealing with silly policies and stupid government cutbacks, that there is at least the iota of a chance that you can actually affect something. I do something with my vote, of course, but also by speaking out. It is so often that I talk to people in my mostly white, affluent world who say this or that about social safety programs and health care, yet have never USED or even think they KNOW anyone who has used these programs. It all becomes very theoretical and hypothetical to them. I think it is important to say, hey, this is how if affects real people. That program freeze you  skimmed over in the paper means that I, the person right in front of you, can’t get health care. Or that 5% “non-essential” service cut not only cost me a big hunk of my grocery budget, but is putting disabled people in life-threatening situations. (Clean laundry for any catheter-dependent person is ESSENTIAL. Infections are frequent and there can be a fast downward spiral for those who lose services.)

The balance between speaking out against injustices and not getting bogged down under an oppressive system is hard to strike. I think in a way it makes you MORE grateful for everything you have, because it is all so tenuous and nothing is secure. You realize this more when you are at this level of functional survival. I would like to fill up the pages of this blog with nothing but beauty and fun vacations and kid stories. I would love a life where I could just concentrate on those things. But I don’t have it, and one of the few things I can do is talk about it.

But that doesn’t mean I shouldn’t pause a bit more and relish in the good things and take note of all the gratitude I have for the many wonderful things in life. Right now, I am very grateful for each day I am alive to see my kids grow up and share with my family. I am also grateful for having had the honor, through the magical world of blogging, of sharing a tiny piece of the life of Ms. Cheryl Colehour.

*The latest on OCB is that the poor guy that got the job N applied for cannot start working because days after he was hired, OCB was put on some kind of assets and hiring freeze. Nor can he go back to contract work for them because he is a hire. It could be up to six months or more before he will have a start date, or he may never start, depending on what becomes of OCB. I hope he has the means to make it through. But, yeah. Grateful to have dodged that bullet.

Immigrants, The Reason My Head Hurts

Ack! Ack! Ack! I started off the new year making a mistake. It isn’t that it has really any serious consequences, just I’m guilty so I have to purge my sin.

My state has a measure system where individual citizens can put measures on the ballot by collecting enough signatures. Volunteers with clipboards often try to collect signatures at the transit stations, so I get approached to sign petitions about once a week. In general, if I have time and if the measure isn’t offensive to me, I’ll sign them because I like to promote citizen action, I know what they are doing is hard work, and their measures usually generate a lot of much needed discussion.

So Avery and I were at a transit center after just having gone to the dentist. I was experimenting with having Avery walk instead of use the stroller, so I was having to keep a close eye on him, as well as watch for the train. I was approached by a petition worker, and she wanted me to sign a measure that (I thought) had to do with having people vote for parties instead of individual candidates. I knew that would never pass, but it was interesting to me because this is what they do in many other countries (such as Canada) and the idea is that you are voting for platforms and ideas and not on individuals, thus keeping a lot of the petty negative attacks out of the elections. It doesn’t totally work, of course, as everyone knows who leads the party. One can find that Stephen Harper is both loved and loathes (I tend to fall on the loathe side of that one) and the response to the Death of Jack Layton last summer bordered on hero worship. However, I do think it is an interesting way to keep the focus of elections on policy instead of who blew who and who left their wives for younger models and how fat the first lady is (NOT!) etc.

So, I”m signing the petition and I’m watching my kid and I said, oh, yeah…like they do in Canada. And she goes, well, Canada is more grounded than us, they don’t let immigrants in.

(Did you just hear the breaks go off in my head. I was literally, “Wh..Wha..Whaaaat?” I mean, Canada is 50% immigrants. They have a very liberal immigration and refuge policy. And what do IMMIGRANTS have to do with it anyway?)

And then, after I stuttered for a moment having already signed the damned petition and handed it back again, she went off on this bigoted tirade about immigrants and drug dealers and sex workers that JUST WOULDN’T STOP!

Ok, so get this logic flow: She tells me she has MS, and she can’t keep a job and she can’t get on disability. And that, apparently, is the fault of immigrants. And then she tells me that she has been sexually assaulted, and that hundreds of women are in jail for assault because they defended themselves against rapists but the rapists got off and they got put in jail for defending themselves, and somehow, this is the fault of immigrants.

And at this point, I just wanted to get the hell away from her, because telling her I was on disability and married to an immigrant didn’t seem wise and I was too busy trying to keep and eye on my kid to come up with anything educated to say. Thank God my seven year olds were not there, because then I would have HAD to say something. Avery was oblivious, of course.

But lady? If you removed every single immigrant from the US you would still have the exact same problems. You are not able to keep a job and cannot get on disability because you are a member of an oppressed group that is systemically discriminated against, just like many of the immigrants you hate so much. And the problems with rapists not being prosecuted and women not being believed are because of rape culture and the patriarchy. Many more citizens who rape get away with it than immigrants who rape. And it is wrong on both accounts, but if anything, immigrants are MORE likely to be prosecuted than citizens.

Maybe the rest of you already think this is obvious, but I just had a small revelation. Are these people who think in these totally illogical leaps like this just UNABLE to process that their own country could treat them like this so they have to blame it on something “foreign”? I do NOT get the hatred of immigrants. As a person who has had to deal with immigration issues for years, here is how I think it should go down: A person who wants to move to a new country should provide a detailed background check. If there is nothing serious on the check, they should be allowed to move and be eligible for (with the same responsibilities as well) whatever residents are eligible for and be able to move to a fairly quick path to citizenship. The world would be a much more egalitarian place if this were possible. (And yes, the US would likely lose some power and wealth, but gain an appreciation for diversity.) Locking people in or out of anything for the purely arbitrary reason of where they were born is just stupid.

Anyway, I shudder that I supported this stupid woman’s petition and was not able to get myself together to respond coherently to her. By the way, it turns out, her petition was the opposite of what I thought it was. It was a measure to allow individuals who are affiliated with no party to run for office. To which I say, that is stupid. Although I support the idea of more than two parties as a way to enhance the political process, if you can’t get a platform together and a party to support it (and this includes founding your own party) then you probably shouldn’t be running for office anyway.

Gah!

Some Things Happen for a Reason

After learning more and more about the shitstorm that is happening at Oregon Commission for the Blind right now, I am even more relieved that N didn’t get that job. I think he might have dodged a major bullet. This still doesn’t make what is going on fair for any of the blind Oregonians that need services and deserve a competent, highly effective services center. What I am afraid of, (yet also why we probably dodged a bullet) is that the state is going to cut funding, fold the program into regular VR where specialized training will no longer happen, or cut the entire program altogether. I support the continued funding of the program as it is, (or is supposed to be) a consumer-driven program that provides specialized services to blind Oregonians. But agree that MUCH improvement and overhaul is needed. I think the only way this is going to happen is for new blood to get in there and clean f’ing house.

Anyway, to promote the outing of OCB director Linda Mock, which I support, I will publish a few links of info for ya.

First, an article about the OCB protests that happened earlier this month, with some good commentary.

Second, a good summary article from the Braille Monitor: A Wake-Up Call for the Oregon Commission for the Blind

And third, a Change.org petition to the Oregon Legislature that calls for the resignation of Linda Mock.  (BTW, the shitty spelling and grammar on there should be a clue as to the need for skills training for blind Oregonians, but I respect their speaking out, even if done so imperfectly.)

There are some good employees at OCB, I do want to say that. But the defensive comments of Ms. Mock are just hilarious. They couldn’t track funding because they are counselors, not accountants????? At almost every job I’ve had, I’ve had to track funding. As a teacher, I had to track supplies and curriculum purchases, as a researcher, I had to manage grant budgets, as a home health care worker, I have to track hours, and any money that changes hands between client and worker. And believe you me, I AM NOT AN ACCOUNTANT. And then they couldn’t give a ten-page budget document to their (mostly blind) commissioners because it was TOO COMPLEX? C’mon. I got a ten page budget in the mail yesterday from my stupid HOA and I understood it just fine. And they can’t track cell phone bills because they are HARD TO READ? Um, I’m blind, and I can read my own phone bills ON THE COMPUTER.

Oh, she entertains me. Almost as much as when she said N was the most qualified for the job but they wanted someone who could start right away with no training. Heh.

Meandering somewhere that isn’t here.

John Crighton chilling out on Planet Acquara

This isn’t anything new to me, but it is weird how all of our stuff, our problems or whatever, are relative. One of the struggles I admit to having is when people whine or complain about stupid shit. I know it sounds stupid to me, but to them it is a real problem. I say this knowing that if you dropped me in say, a refuge camp in Somalia or a Chinese factory where I had to spend 16 hour days working in crappy conditions for little pay, I would have a huge wake up call of mass proportions because I get that I just have NO idea.

And then there is stuff I have come to understand better, you can do stuff without, but when you have it, it is hard to give it up. For example, there was a time when I went, oh whatever it was, 1400 days straight as a single mom with no break. When other moms would complain about how hard the weekend was going to be with their husband out of town. And they would have to feed and bathe and otherwise deal with the kid for 48 hours straight. Oh, Boo Hoo, I thought, totally thinking that was weird. Now that I have a live-in parenting partner to divide the work up with, I get it. Don’t get me wrong, I know I could take care of all three kids myself for all eternity if necessary. I have no doubt I could do that and would if circumstances required it. But now, I just don’t want to. And what a luxury it is to have that choice.

Wow, I’m getting all John Scalzi-esque in my use of italics, there.

Anyway, I was just thinking about this today. I went to an indoor playthings (one of those bouncy house places) with a friend of mine and three of her four children. She is a good mom and works hard for her kids and cares about them very much. Her two oldest kids, she adopted out of foster care (they were cousins of her husband) when they were 5 and 2. Then she has two bio kids as well. The three youngest kids are doing fine. But the oldest, the one she adopted when she was 5, has severe attachment disorder problems. The kind that have changed her whole life and whole way of thinking. She is 10 now, and she steals, starts fires, tries to hurt herself, tries to hurt other kids, doesn’t do any work or school work, gets suspended all the time, has screaming fits, etc. They have to lock up everything in their house. They go to counseling several times a week. I don’t know the extent of what has been tried, but I do honestly believe that they have tried everything within their ability to help her. The current thing they are trying is to have her spend time with her birth mom, thinking that perhaps she will connect on some level to her. (The birth mom is in a much better place, now.) But while we were sitting there, the birth mom calls her to tell her that she can’t keep her as long as planned. The honeymoon period is over, and the birth mom is seeing some of the behaviors that have manifested.

My friend tells me all this by talking nonstop in a sing-song voice. She throws in a lot of wit and sarcasm as she goes, so although you know you are listening to a tragic story, you can’t help but laugh. My friend has come to a place of somewhat acceptance, knowing that there may be nothing that she can do. That she might not be able to keep her alive or out of jail before she is 18. At her wits end, I can tell that she needs to talk, and that there is a great sadness under the surface. She tells me about the statistical likelihood of her daughter committing suicide while she smiles at and bounces her 3 month old son on her lap. I get the sense that my job is to listen, but not probe too much, especially the emotional side of it. If I break her from her rapid-fire, upbeat ironically funny telling of the story, she might totally crack into a breakdown that lies just under the surface. I search my brain, my behavior disorders training for any ideas, but I end up just shutting up. I know that they have already tried everything and there is nothing I can say that they haven’t already thought of.

In another conversation, we both started talking about how much we like Head Start, which both of our kids attend (but separate programs, Baby A is in Early Head Start, her 4 year old is in classic pre-school head start) and I tell her that the teachers say everything in  Spanish, then English (although others probably are fluent in English, she and I are both the only white family in our kids class) and then they come over to me and interpret for me again in English, right in front of me so I can hear/lipread. It must be a lot of work for them, but this is the first time that anyone in the history of my lifetime has done something like that for me. Usually, once I tell them I’m hearing impaired, there may be a token exclamation of assistance and then I am almost immediately and completely excluded from all future communication and have to fight my way back in, depending on my motivation to do so. So she tells me about how she hates going to Head Start parent meetings because the primary language is Spanish and then they interpret English for her. She talks about how awful it is to sit there every five minutes and not understand. How she really can’t participate because she is always behind, she can’t follow in real time with the conversation and she misses what the audience members contribute. She says she feels invisible. I was like, yeah, that is pretty much every day of my entire life, and 999 times out of 1000 I have no interpreter even trying to intervene for me. I don’t know. It was just interesting hearing that perspective, because here is this woman dealing with unimaginable challenges in her life with respect to her daughter, but this is what bugs her. It is something that I rarely even think about, for me, its just how it is. Nothing al that profound there, I just found it interesting how people learn to adapt to their problems and make their way in the world no matter what.

As an aside, a little head start story, which probably says something pretty sad about the state of minorities in our country. The first day I went to Head Start with Avery, I rode the school bus with him while we picked up these other mothers and their kids, all Hispanic and Filipino. I smiled and said hi, but none of them talked to me. I assumed it was a language barrier. When we get there, the teachers started in in English and Spanish about policies, i.e. no photography–we have people hiding in women’s shelters here from abusive husbands (sad), etc. etc. I caught bits and pieces of it, but when a teacher asked me a question, I had no idea what the question was or what the answer would possibly be since I missed so much. So I just apologized and said I am hearing and visually impaired and was unable to follow the conversation. And I swear I heard a collective “Ooh! So that’s why she’s here!” whispers from the other mothers. And then they all became very nice and welcoming after that. It kind of felt like, “What’s the white chick doing in Head Start? What’s her problem? Then when they found out I had a disability, it was almost like I got street cred or something. Now the moms and I shuffle along in our differing language struggles but manage to be friendly and communicative with each other. I can’t believe anyone thinks we are anywhere near being post-racial when the entire Head Start program is filled with minorities. The thing is, Head Start is a bit of work. For some, I’m sure it provides much needed child care, but in the Early Head Start program, at least, they require much of the parents to be involved. Everyone there is working hard to give their kid the best they can. These are not stupid, lazy, or incompetent people. They just find themselves in poverty by means of having brown skin.

Somewhat switching gears, I’m discovering that I’m changing a lot from my absolute anxiety ridden psychoticness of last summer in which we did our schizoid Vacouver vs. Portland fiasco and I finally admitted to myself that there is something UP with Avery. The anxiety level and fear and uncertainty was so high that I was just physically sick for months. What not taking the Vancouver job and staying has done has been to give me a anxiety break and let me rest and get a grip again. Also, to see what I could offer Avery and to adjust to “the new normal.” In addition, taking over attendant duties for D has put us there every day, and has given me clarification and a better idea of what is going on with him and what my role should be in his life. The financial aspect of taking over that job is that we are also not in total dire desperate money straights like we were. Don’t get me wrong, it is still extremely hard to make sure the budget is balanced, but before we were hemorrhaging. I’m still supporting 7 people, but now it is on about $37K a year(ish) instead of about $28K. That 9K is giving us a very slight bit of breathing room. (Still haven’t heard anything about my dad and the rent. Called him to talk about it and left a message. He hasn’t called me back. So, I’m not really working hard to make that conversation happen, nor is he at this point.)

In essence, I feel like now I can THINK.

And so I’m thinking it is time to actually go Beyond Acquara. Did I ever tell you why the blog is called that? OK, here is the story. In around 2002-2003, I had these two awful years. I was fighting for my job, I was fighting for my fertility, I was fighting for D’s life, and I was not even fighting, just watching my mom die. And I remember watching this episode of Farscape (coughnerdgeekcough) back then where our hero, John Crighton, who has been through interplanetary war and hell and can’t find his way home, gets stranded on a paradise planet called Acquara. And essentially, he gives up. He just sits back and decided he is going to stay right where he is and take a break from life. He was burnt out and couldn’t do it anymore. And at this time in my life, I applied to go on disability (partly out of absolute necessity, as I could not afford COBRA and I had a pending uterine surgery and no way to pay for it. Disability got me, eventually, medicare). So, basically, at my wits end, I just decided to chuck it all and quit this life that I was supposed to be living on someone else’s terms. They said to go to school, get an education, work hard and get a job. I did all those things. And my life still sucked anyway and I was still losing jobs, not getting reasonable accommodations, fighting for every little disability civil right thing, etc. I was no longer going to play by their (their meaning “society’s”) rules when they were not treating me or my mom or D or any of us fairly. I was going to stop, take a break. Think about what I really wanted, and do THAT. I was dropping out. People could judge me and I didn’t care. Can’t have it both ways, I would say. Can’t have people with disabilities NOT get benefits and yet still not give them any civil rights. If I wasn’t going to get met halfway, then screw it. I needed to take a break, and no one could tell me I hadn’t tried hard to play by their rules. If you keep doing the same thing and it isn’t working, it needs to change. And the way I was doing life was not working. I didn’t know what was right, but I needed to stop and reassess. I had gone to Acquara.

It was during that time that what I figured out I wanted was to raise children and to have a home. So that is what I did. I lived in my dad’s house with my kids and that is what I concentrated on. For a time, I thought that was it for me. That was what I was supposed to be doing. Mostly because raising small children is so all consuming, it certainly didn’t FEEL like I was lounging on a beach sipping a pina colada like John Crighton did on his Acquara. But for a time, it was comfortable there. But always in the back of my mind was a “there is something else, something more I’m supposed to be doing here.” My time on Acquara was not supposed to necessarily be forever. But it was a time of trying to figure out, OK. If doing it “their way” isn’t going to work for me, what will? What should I be doing? What is the new direction I should go? How will I get there?

When I started this blog and decided to name it, my life was changing a lot. Nik had just come into my life on a more serious, “we are finally going to figure out how to do this” level. I saw bright possibilities for my future. I felt it was time to go Beyond Acquara. And my other blog, “A Letter to My Children” was all about the kids. This one was supposed to be about how I was going to go beyond where I was at and pave my new way. This didn’t necessarily mean I was just going to go back to work, although work might be a part of it, it was figuring out a way to live purposefully and meaningfully by following rules that worked for me and my family. I used to have a goal to get off disability, but now I don’t know if I ever will and I don’t feel ONE IOTA of guilt about it. When I talk to people who hear our stories about Nik and Wells Fargo or myself and some of the stuff I’ve dealt with in the workplace, there is always this notion of “you didn’t try hard enough, you didn’t explain things well enough…” And you know what? They have ABSOLUTELY NO IDEA how hard people with disabilities try to play by the unfair rules that corporations, government and culture bind us with. NO IDEA. And my feeling is, if it is going to continue to be acceptable to treat us like crap, then I will take your shitty SSDI consolation prize and move on with my life. I have paid into FICA the required amount, I continue to pay FICA taxes, this is an insurance plan that I’ve paid premiums on. If people/ corporations want to have such control over who they hire and what they are willing to accommodate to the point where over 70% of a population (and 99% of MY population of deaf blind) are left out, then fine. I will cash in on my insurance policy and work it from the outside. It will bite them in the ass anyway. By not enforcing the laws and strengthening regulations on fair employment practices, what you get is an epidemic of people with “lesser” disabilities also cashing in on their SSDI insurance policies. When a person with carpel tunnel or back aches cannot get work because employers won’t even provide them with some simple modifications then more and more people that could work are going to continue to drop out at a loss to everyone. I still believe, that EVERYONE can work. Everyone can contribute at some level. The problem is, not everyone can work under the current employer-biased corporacracy.

But anyway, so Beyond Acquara. Nik and I have been challenged by a lot of stupid shit in our effort to move on. Immigration, discrimination, my dad, D. Avery (well, Avery is not stupid shit, but he has been an unexpected element of our efforts to move on.) But in some ways, it may be Avery who is the catalyst, the motivation to get us on with it. My goal to raise a family still remains true, but my definition of “home” has changed. In some ways, my definition of “family” has evolved. Avery, along with all the kids, but Avery in particular because of his potential challenges in life is motivating me to look past my fears and anxieties.

I’ve had this damned song in my head that goes: “Lend your voices only to sounds of freedom/ No longer lend your strength to that which you wish to be free from/ Live a life of love and bravery and you shall lead/ a life uncommon.” So, though you can’t totally avoid it, I no longer want to lend my strength to that which I wish to be free from. That includes things like my dad and this house. If anything was a useless, unnecessary problem, that is. D will always be in my life in some way or another. But I know that I can’t fight the totality of shit that quads have to go through in this country for someone who isn’t fighting for life himself. I have a lot of empathy for what he has to deal with. I wish I could change it in an instant. I’ll always support community living options for high level quads. D’s issues are complex. But his complicated issues and my empathy for them don’t have a lot to do with the basic standards of which I insist myself and the kids get treated. And he is not meeting them. If we were a true team like I had wanted, if he was willing and/or able to treat us with minimal levels of respect, sacrifices I might make for him would feel more worth it, but right now, I feel like I’m often put in the position of choosing between him and my kids. First of all, I don’t want to lend my strength to that anymore. Second, if I do, the kids are gonna win. I have to look at the reality that what I wanted for us is not going to be what is. I do not think D is a bad person, I think people are nuanced and complex. I realize that I don’t have to think he is a bad person to move in a different direction from him. Its just the way it is.

So, this is long enough of meandering thoughts. I can just feel the winds of change coming. No definite plans have been made. We are just trying to relax through the holidays and enjoy the now. The magical moments we have every day with our kids and our community. Now it feels like a lot of shedding and mourning things that I can’t have, or never did have and can’t want anymore. But also a new energy and excitement for what is to come. I was not ready last summer, but I’m building my strength now for a new adventure, a new direction, a life Beyond Acquara.