My Grandpa

Sigh.

To say it’s been the ‘summer of change’ could be the largest understatement ever around here. So much has happened in EVERY corner of our lives that I feel an upheaval like never before in my life.

As we drove to San Jose, a week ago today, I learned my beloved grandfather passed away.

It was one of those moments I knew had been coming for the past decade, it seems…yet I was almost unable to process it as I stared at the open road ahead.

I don’t have many words yet to describe how all of this is making me feel. I can say, in all honesty, my Grandfather has only wanted to be with my Grandmother since the second she passed away when I was a little girl. So I’m taking comfort in knowing he is now with my Grandmother. At least I like to pretend that’s where they are, regardless of my beliefs.

So I’m going to just pretend for awhile longer, because all of the reality heaped on us this summer is too much. Good or bad news, it’s all just too much.

Grandpa & Me

Now’s Normal

Caregiving isn’t easy.

I watched my parents take in my Grandfather years ago. Things changed dramatically.

I watched my Mom care for my father. Things changed dramatically.

I watched my cousins and uncle care for my aunt. Things changed dramatically.

I watch my husband care for me. Things continue to change dramatically.

Chronic illness has many different side effects. But I swear the very worst may be what it does to everyone around the person who is chronically ill. It’s not just the sick person who’s life changes. It is everyone in their family. It is everyone they know. And it’s not a ripple effect…it’s a tidal wave. The kind that pulls everyone put to sea and everyone has to work hard to paddle back to shore.

Sadly, not all make it to the sand.

Of course this adds to the stress of illness.I worry less about my own health and worry more about my family. You don’t want to be a burden and you don’t want their lives to changes, however everyone’s lives change dramatically.

My therapist calls it the ‘new’ normal. I loathe the term. Mainly because I don’t want a ‘new’ normal. I want my old normal back. I want everything the way it was before. Of course that’s impossible, however my goal is to at least get as close as I can to what life used to be like. Becoming healthy enough to return to work, to walk a theme park, to be able to take the kids wherever they need to go and actually participate in any activity a normal parent could engage in- from a walking field trip to just helping in a classroom, filled with all those kid germs.

I want to meet my husband for drinks after work, go out on the town. Attend a concert.

So many things that I could go ahead and do now but would require a ton of planning and accommodations for the ‘just in case’ scenarios that come with chronic illness.

In fact, later this week I’ll be attending BlogHer ’14 in San Jose- but I will have to very carefully plan my days and evenings. The drive alone will be tiring, and I won’t be able to medicate myself until we arrive. Then I will be attending an event at 3pm- which means I will most likely be exhausted and absolutely need rest- rendering any evening actives null and void. Then depending on how tired I am when I awake, we’ll see what we can do. But odds are it won’t be much.

When I think about this ‘new’ normal I do get a bit upset for all those times I never considered how lucky I truly was to not have to be able to worry about a thing- to travel at a moment’s notice and not have to worry about making sure I was rested, making sure all of my medications were packed and ready…making sure I hadn’t just been released from the hospital for the 4th time this year. However I’ve learned over the years to not get angry.

I’m not in control of this disease, all I can control are my habits. So my new normal has meant pool exercise. Eating well. And making sure I’m on top of all my medication.

Of course just when I can see a difference and FEEL a difference, I get thrown a curve by ball an urgent care doctor who is adamant I be sent to the hospital for migraine symptoms that could be a mini stroke. It’s times like these I feel like I’ve failed my family and myself. What did I do wrong? What should I have done after getting a classic migraine, like I’ve been getting since puberty…especially headed to treatment where I knew I might get a little queasy?

Apparently spend the night in the hospital just to be sure all was well.

Sigh

Every test came back fine…minus my cholesterol which is now high, apparently. Oh, and my potassium which was low, apparently. But the MRI, the CT, the PT, OT, Speech Therapist…all fine fine fine.

So with nothing you can do, you sit in a hospital bed and try not to worry or be upset and accept the ‘new’ normal that disrupts everyone’s lives. The husband that once again has to take off time from work to help you. The kids who will once again act out in some way because Mom was back in the hospital.

If I could make a deal with the devil to rid my life of this…I would. But not for me, all I did was lay in a bed and injected with good drugs. I would, however, take this away from all those around me.

Now I know full well I would go to the ends of the earth for my husband and kids. For my entire family. I’d let them disrupt every day if they had a ‘new’ normal we couldn’t control. It is a no brainer. I just want to acknowledge everything they go through for me…I love them beyond words.

And I hope we settle into this NOW normal and eventually just think of it as normal, with or without Satan.

My Daughter’s Digital Duel, I Vote DISLIKE

Digital parenting can #suckit.

As many of you know, both of my kids are rather plugged in. I mean…PLUGGED IN. They game, they blog, they game, they do their homework online, they game, they watch tv online, they do EVERYTHING on their iPads or computers. So it should come as zero surprise that any discipline in this house tends to be a direct ‘take away’ of said plugged-in-ed-ness.

My 9-year old plays Animal Jam. She chats. She makes videos. She trades. All of these things are done under my watchful eye-I check her chats, I watch her videos, she tells me about her trades. I hear all the drama when someone makes a bad trade. I hear all the drama when someone wants to make a video and records her and her friends. Up until now we haven’t had a single issue.

Notice I said… until now.

The other day said 9-year old came down the stairs in tears and hysterical. She made a friend on Animal Jam she thought she could trust. He asked if he could borrow her rare spike collar to make a video. She agreed. He took the spike and bolted. She reported him, drama ensued. She asked if I could ask for help from Animal Jam support.

No problem.

H and abucka

I dutifully sent my Motherly email and asked them to check out her story and his and hopefully get her item back. If not, lesson learned. In the meantime he was blocked from her den and her chats so he couldn’t bother her any longer.

Or so I thought.

She unblocked him without me knowing and attempted to retrieve her spike herself. Continuing the drama with him calling names and her demanding her item. Yup. This is what goes on in the digital 9-year old world. HIGH DRAMA.

I found out by accident, as she casually mentioned in a Skype chat with her girlfriend that he was calling her names. Busted. So I wrote another email to Animal Jam support apologizing for my daughter having unblocked the alleged thief and taking matters into her own hands, when we had clearly handed it over to their authority. And then grounded her from the game for a week.

You’d think I’d have killed a gazillion kittens and bunnies. There was door slamming and tears. There was moping. There is currently, next to me, many sighs of boredom.

We’ve been very careful about allowing the kids their own digital spaces without invading their privacy, but also making sure they are in safe places online and are only exposed to what we feel they can handle. But I have to admit, the kids are both playing in worlds that are essentially Second Life or online playdates. With that comes real life disputes and real life hurt feelings and real life everything.

Of course we had a very long talk about her online habits. Trusting someone she had only met the day before (believe me, I worked the Frozen angle on that one into the ground) and making videos about other players, respecting privacy, and informing parents of any activity that isn’t right.

I suppose something like this could just as easily happen in the bike-riding, come home when the street lights turn on, childhoods of our past. The boy down the street might have asked to borrow her shiny, rare, Garbage Pail Kid card to make a video and promise to give it back after. Then runs off into his house and shuts the doors and pulls the window shades. I mean…I suppose that could happen. And I suppose this Mom would have then gotten on the phone with his Mom where she needed to investigate if he committed the accusations. Then I suppose my daughter could have snuck out to go see said boy and fight with him again to get her card back. That’s all very childhood and kid-like….right? Right?

Ugh. All I know is I’m exhausted from having moderated her first digital feud and our first digital foul. And her first digital grounding.

Who knew grounding a kid from an online world could be just as devastating as grounding them from real life?

 

The 4th & Murrieta, California’s Hate for New Americans

As you ready your house flags, don your sunscreen and set up your BBQ’s, I would love if we all reflected a bit on what it means to be an American.

For a long awhile, I admit to having never given much thought to what it means to be an American. I’ve always been one and have enjoyed all of it’s privileges and rights. After all, we are the envy of many other countries. So much so, that people will risk their lives to come here.

Think about that for a minute. How bad would it have to be for you, in your own life, to risk everything in order to get yourself to another country?

I don’t live far from Murrieta, California. For those not following the news, there are refugees from places like El Salvador, Guatemala and Honduras, most of them children and young mothers with babies, who have risked their lives and their children’s lives because it is so very bad where they come from they seek a better life in the United States.

They’ve walked miles with only as much as they could carry. They’ve dangerously jumped on trains to hitch a ride some of the way. They’ve crossed hot and barren deserts, climbed mountains, and many have died.

Jack and Hala at the Capitol rocking it for Lupus
My children in front of the Capitol in Washington, DC.

One of these mothers was interviewed on our local news. She said her two children had no future in her village. It was nothing but poverty and crime with no way out. So she made the heart wrenching decision to attempt to make it to the United State’s border. She said she heard if they made it, they might be allowed to stay, or they might be sent back. She understood the odds. She also didn’t feel as though she was doing anything illegal as she knew, if her plan worked, she would at some point meet up with American Border Patrol.

Despite what she did know, she had no idea some Americans would be so very unwelcoming once she arrived. Screaming at her and her children as their bus approached the Murrieta processing center. Causing such havoc, the bus turned away due to security concerns.

I wonder what my ancestors thought as they made the voyage over the Atlantic to get here. They knew, once they reached the process center at the other end, they was also a chance they would be sent back. Illnesses from a sniffle to lice, could mean the difference between life and death for the family. It could also mean children separated from their parents.

My Polish ancestors were called stupid and given menial jobs upon their immigration. My Romanian ancestors had an even tougher time, called gypsies and not even trusted enough to be employed. Yet, through hard work and that ever present American dream that made them roll the dice, my Polish great-grandparents found themselves a Polish speaking area in Detroit and set up a corner store. Never learning English. My Romanian ancestors doing just as well, with my grandfather owning his own travel and insurance company after starting off, shall we say, a bit less ‘legal’ in order to make ends meet. Before his death he told us all stories of his first job…running alcohol between Windsor, Canada and Detroit, MI for none other than Al Capone.

Both were discriminated against, but I don’t remember my history class teaching us of throngs of anti-immigrant Americans attempting to block the ships and send them all back. Though it wouldn’t surprise me if they had, in fact, tried.

So as I watch these children look out the windows of federal buses, seeing screaming (predominately) white folk waving the Red, White, and Blue…I wonder what they must be thinking. How scared they must be. How very, very scared their parents must be…willing to, perhaps, change their last names to sound more American or even deny their homeland in the hopes it will help them get through the processing center. Desperately willing their families be allowed to stay together, and desperately hoping what they have heard is true…that this truly is the land of opportunity.

I have yet to hear one of them say, when interviewed, they ‘heard’ they could get ‘free stuff’ if they made it. All of them talk of hoping to find work, any kind of work, immediately.

Hear that? They want to work. They aren’t asking for hand outs.

This morning I’m listening to another of these mothers…this one from Honduras, speak of how she nearly lost her children as they crossed a river trying to get to our land of liberty. She was in tears speaking of their journey, the entire time saying if only they could get to America, everything would be ok. She would find work and no matter what, it couldn’t possibly be as bad as the dirt floor of their shanty that was left behind.

I am sickened these refugees were ‘welcomed’ by residents (and non-residents) of Murrieta demanding they ‘go back to Mexico’ and ‘get their diseases out of our city.’

Sound familiar? It should. It wasn’t long ago Americans of a certain kind believed Black Americans should use different toilets for fear their imagined diseases. As if scabies (the disease most often seen by border agents) was some odd, untreatable malady and only brown people carried it.

So this 4th of July I find myself wondering what it truly means to be American. For the majority of us, it means to be an immigrant. Unless you are of Native American decent. There are tales of Native American blood in my family tree, although none confirmed. So really, just like most of us, my family risked a great deal to journey to a foreign land that held nothing but promises. That they heard offered opportunities where if you worked hard, you could become anything you wanted to be. I don’t ever remember that promise being ‘if you did nothing, you got free stuff…so come on over!’

No, just like my ancestors and just like these scared mothers I’m watching on the news, the tale remains the same. They heard if you came to America and worked hard you could be anything. And your children, your precious children, had a chance at a better life.

I want to take this 4th to thank my ancestors for believing in that dream and I want to tell those refugees those of us who are Americans still believe in that dream and I hope they still can too. We don’t all hate you or want you to be turned away.

This 4th of July I hope this new wave of immigration is welcomed-regardless of how they got here. I hope they are processed and given a chance. The same chance my ancestors were given. Some choosing to walk the straight and narrow to make ends meet and others bending the rules a bit, but all believing in hard work.

This 4th of July I also hope those of us citizens think hard about what it means to be an American, because I now think that definition includes offering that same chance to those who journey here under horrifying and harrowing circumstances we can’t even imagine and give some chance to these families. Not to mention respect, not hate and anger.

Shame on you, Murrieta.

*Update 8:24am July 3rd, 2014 – this is a link to the fliers they are passing out in Murrieta, CA. I ask you: How healthy are these families that have walked thousands of miles, hiking over mountains, and crossing rivers? Give me a break. Perhaps if we all VACCINATE and treat these families (if they do have any of these diseases, as I said before scabies has been the only reported one thus far) during processing (that’s what happens when the buses arrive, they are PROCESSED AND TREATED) we really won’t have any sort of health criss on our hands here, now will we? Unless you mean to tell me these people are different somehow? Cue scene from The Help where new bathrooms are build just for those diseased black folk….

Benghazi!

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…that’s what I thought was going to be screamed next from the podium as the William S Hart School Board’s public comments were underway.

It was like watching a Fox News Tea Party convention, minus the annoying anchors.

Let me back up a bit here…

It came to my attention awhile ago that my local school board was not in compliance with a new law here in California. Actually, it’s not a new law…it’s from 2012. It’s called the FAIR Act and it basically makes sure students are learning about all sorts of figures in American and Global history, specifically it’s making sure LGBTQ, the disabled, Native Americans and Pacific Islanders are included. It also makes sure anything left in old textbooks that discriminates against these groups is removed.

Not too hard, right?

Well, apparently for my local school board this a monumental task that has taken them over two years to get off their asses and accomplish. The really sad thing? They claim it’s because they don’t have the money for curriculum or teacher training (at last check the district had an over $40 million dollar surplus) and that they have until 2015 to really have to do anything.

Turns out, the district is either lying, or is  just really, really wrong and incompetent. There is FREE curriculum being offered, including lesson plans, by a TON of organizations. There is also FREE teacher training being offered by various organizations. And that 2015 thing? After speaking to the California Department of Education myself AND the ACLU myself, turns out it ONLY applies to TEXTBOOKS for K-8 and does not apply to the supplemental curriculum that is and was due in classes immediately after the law was passed. You know, over two years ago.

So why is this so important? Because when students see people like themselves, families like the ones they live in, representatives of who they are (gay, straight, white, black, female, male, disabled, you get the idea) they are less likely to kill themselves, feel bad about their own lives, become depressed, and generally do better in school. And you know what else happens as a side effect? Less bullying.

Enter tonight’s nuttiness at the school board meeting. A group of parents, students, and community members decided we’d all had enough with the board dragging it’s feet and did what we could to support a senior at one of our high schools. He’s the President of his Gay/Straight Alliance club and he’s been pushing the board for the past SIX MONTHS to get this curriculum going and to comply with the LAW. With our help, we learned a lot of what I just posted above and helped him gather signatures on a petition and distribute a survey to his fellow students – to get an accurate idea of what they think about these issues. We all, also, agreed to come show support and speak at the school board meeting.

He had great stats, great studies, we found and printed out several examples of the curriculum and lesson plans the district could begin using to supplement in classrooms NOW and we all told our own stories about why the board needed to be in compliance with state law. I spoke about being disabled and bi- and that my kids were asking why their school board leaders weren’t teaching their peers about Harvey Milk or Helen Keller- people like in OUR family…like their MOM.

Another community member read a very powerful letter from a 2013 graduate of the district. She was suicidal and did not feel supported by the district or her school during her time in high school. She said the FAIR Act would have shown her that people like her DO succeed, that they can do great and important things and that yes, it does get better.

This is how we went on…and on…standing up and speaking about why this Act needed to be implemented yesterday and how, it may seem to some, the district was discriminating against these groups by delaying.

Of course, the local school board member/conservative shock jock took our Facebook posts supporting the FAIR Act to be an attack on his free speech. (I have no idea, your guess is as good as mine here…apparently because he called it the ‘Looney law’ and has also tweeted incredibly insensitive things about the LGBTQ community and is generally against equality he assumed we were there to ask for his head on a platter.)

And cue the clown car.

As we spoke on the Fair Act, up came speaker after speaker testifying to what a wonderful human this guy is and why we are horrible socialists out to destroy America! and the Constitution!!. One woman even held up a Saul Alinsky book claiming it to be our Bible and telling us to ‘BRING IT ON!’ I actually couldn’t hold my laughter in and lost it in the back of the room. (for the record I’ve never even seen the book and have only heard about it from conservatives who swear it’s my Bible…)

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I actually snorted at one point by the sheer comedy of it all. There was even a mother of two boys who told us her 12-year old was VERY upset about the ball player who came out and the subsequent media coverage and why everyone cared where he put his penis because it was interrupting his TV time.

I wish I were kidding.

I was expecting someone to shout Benghazi! and, of course, blame Obama for California’s FAIR Act, but sadly the night grew long and the speakers finally were finished before tin foil hats ACTUALLY appeared as they sang the praises of a radio talk show host/school board member…instead of backing the students asking for their help.

And here we were, with our facts, our stats, our stacks of free curriculum, and our support for the student presenting it all to the board. I, personally, told the board they should be embarrassed a student was pushing them to comply with the law and they should be doing their JOBS so I can tell my kids they represent ALL kids, even ones from families with a disabled mother. But it all seemed lost in the clown car show.

And just when you thought it couldn’t get more humiliating for the board member, the ego of this man somehow compelled him to speak at the end of the public comment session (which, if you go by rules isn’t supposed to happen but hey, they don’t seem to comply with the law, why would they follow meeting rules?) – School board member and radio host Joe Messina told the crowd it was great to see ‘democracy’ in action in front of him and thanked both sides- even the ‘opposition’ (I’m sorry, opposition to what? Him? Um… no…opposition to board inaction? SURE!) as it became about HIM and again, NOT about the FAIR Act we all spoke about or the students…despite his assertion about how much he cares about these students.

Let me just say this, if Joe Messina cared about the students, he would have used his time at the end of public discussion (breaking the rules)  to have asked the rest of the board to do something about complying with the law instead of thanking the clown car.

It’s a sad day in education when a young, gay man with three weeks left until high school graduation stands before his board of education begging them to take action on a law already imposed upon them by the state so that no one has to go through what he did…and the only board response was from a straight man thanking everyone for the attention HE received that night.

As a disabled mother in the district I feel as if the board is willfully discriminating against me and my family – and I applaud Andy Taban for standing up and speaking truth to power at such a young age.

Even if it means I have to fight this with legal action or continued pleas in front of the board, Mr. Taban will be one of those American heroes future Hart District kids will read about in their new history books. Even with the clown car all around him, he stood tall and proud and OUT and refused to be silenced. That’s one hell of a start for a Senior in high school dealing with adults who were clearly less mature and informed.

Benghazi!

For My Kids

Sometimes you just have to tell your doctor some things are more important than staying away from germs, despite your immune system being entirely compromised.

You can't hear Happy Birthday on the morning of your #9th b-day without a brother squeeze #allhailhala

Sometimes you just have to sit down with your husband and discuss the ramifications for your family if you open your  mouth on an important issue, knowing full well it’s brought death threats and hate to your door before.

Sometimes you just have to say BECAUSE EQUALITY MATTERS – and say it standing up, not in a wheelchair, without your cane, and hope they are paying attention when it is your turn to speak. Because you are standing up in tremendous pain so they can see your face, and you do not want their pity or their prayers. You want them to LISTEN. You spent the day having lifesaving drugs pumped into your body, and you know some of those starting down from their place on high think are a ‘taker’ unworthy of  life because God is certainly punishing you for your wicked ways.

Sometimes you have to cry because any of it is necessary in 2014, two years after a law has gone into effect, that you’re not treated like a second class citizen, that LGBT friends and family are not treated like second class citizens, that STUDENTS are not treated like second class citizens and that your children’s peers are not taught disabled or LGBT American heroes simply do.not.matter. by your local school district.

Sometimes you need to go to a school board meeting and speak your mind.

To be continued… 

 

I Was Called “Bossy” & What They Meant Was “Bitch”

Here is why I’m loving the #BanBossy campaign:

Not because I think banning a word is the end game or point. Not because we shouldn’t “reclaim” the word “bossy” and make it a positive, leadership-affirming word for girls. No, I am loving the campaign because when I was a kid and I was called bossy…they really meant “bitch.”

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I am not the biggest fan of the entire Lean In movement (another blog post for another time) nor do I think you can solve the world’s problems with “banning” anything. But if we can change the narrative on “Bossy” if we can TALK more about why girls are called “Bossy” and boys aren’t…if this means #BanBossy gets it started than WHOO HOO.

Think about it, #BanBossy is already generating a ton of social media buzz. A ton of talk. A ton of discussion about girls and leadership. That means IT IS WORKING.

Now some of you don’t have the negative connotation that I do with the word “Bossy.” I get that.

However, I do. This speaks to me, directly.

Bossy was never meant as a compliment. It was never meant as one of list of things I was, and still am, that anyone would put in the “positive” pile in the pro and con sheet of my life.

But I was just doing what the boys did. I was simply taking charge, just like the boys were. And for those who would argue “Well, Erin, maybe you weren’t nice.” Were the boys “nice” when they told everyone what to do? And if they were mean, were they called anything even close to “bossy” or were they heralded as a “strong leader that didn’t take anyone’s shit?”

Exactly.

I’m raising a son and a daughter and my husband and I try VERY hard not to pigeon hole them with gender stereotypes, but sometimes things slip out. For instance the other day I told my daughter to “act like a lady.”

What the hell does that even mean? I can’t even remember what she was doing, and I quickly backtracked and talked to both of my kids about what I had said.

Which is just another reason why I think the #BanBossy campaign is exactly what we need, because I know when you call me Bossy, you really mean Bitch. And I’ll be damned if you are going to call my strong, independent daughter a bitch.

QueenofSpain Erin Kotecki Vest Reaches Social Media Milestone

Yes, that’s me.

 

And yes, there is more to this story that many may not know.

I’m all over the world baby. From Boulder to Barcelona.

WORLDWIDE