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Almost an After Thought

September 28, 2011 by 22 Comments

Sigh. Boys. I'd like one day without an injury!!!!

My eight-year old son shattered my heart into a million pieces tonight as I realized Lupus was stealing his innocence.

Stealing is the only word I could come up with-because it’s just like a thief. Taking my organs and my health and my figure and my mind. And now it’s moving on to the people I love most…the ones I fight so hard to protect from this burglar.

I was laying in bed next to him, giving him comfort in order to get him to sleep and getting him ready for the next few days ahead. It’s treatment week at our house, which means Mom is hooked up to an IV for 5-7 hours a day, and very tired and worn when she returns. It means their normal routine gets bounced around, with uncertainty over just who might show up to pick them up and just what might be in store when they finally get home.

I had planned their days carefully, from their lunches to their playdates after, to all the things I could control in order to ease the chaos and worry that comes with treatment week. I try hard to eliminate as much of that uncertainly as I can, knowing they thrive on normalcy and knowing what is next. But in doing this, it seems I failed at giving them the bigger picture.

He was nearly asleep, and I lay there stroking his hair as I tend to do, and rubbing his back, as I tend to do, and whispering the many things I say to try and fortify him and surround him with reassurance and love…

…honey I wish I could take away all your worry.

Mom, I wish I could take away your Lupus.

And I started to choke up, but forced my hand to not miss a beat rubbing his back.

I’m getting so much better though sweetie. My treatments are working.

But all you do is go to treatment. All you do is go to the doctor. Every day you go to the doctors. Only people who are dying go to the doctor every day.

And with the weight of a million tears I felt crushed and paralyzed. Flattened and pinned deep into the bed.

He is so very smart, my son. He is right. I am at the doctor very nearly every day. And we are there to make sure I do not die. But he is wrong to be so afraid right now. I AM getting better, it’s just very hard for an eight-year old to see or understand, when all he sees is Mom headed, yet again, to the hospital or medical center.

I have never worked so hard to keep the tears inside. They were flowing down the sides of my cheeks but without my body daring to flinch. He could not, he would not see me cry. This would only scare him more.

I did what mothers and fathers around the world do and I gave him every reason on earth to believe all was well. I did everything I could to make him understand he was safe, I was safe, our family was safe and together.

And then I walked down the stairs. I walked into the living room. I sat between my husband’s legs as he sat on the recliner playing a game. And I wept as hard and as violently as I could muster as he held me.

I had failed him tremendously. I had failed this sensitve, filled with dread, filled with worry child that saw me taking him to school and saying things like ‘Ok honey, you have your wand for Harry Potter class after school? Good because I have the doctor and I will be there right after to pick you up.’ And…’Ok guys today I just have some tests at the doctor and then after I pick you up it’s Slurpee Day!’ And then ‘No, no both you…we can’t have lemon chicken tonight because I’m just too tired to cook, I had treatment all day so we’ll just order a pizza, ok?’

And while my husband and I would throw in things like ‘Mom is doing good she just needs to keep doing good, so she sees the doctor today and tomorrow and the next day.’ Almost an after thought.

All the planning in the world…all the work to protect the kids as much as possible…and this whole time my son thinks his mother, with every doctor’s visit, is closer to death.

I expect this or a similar scenario will play out many times in our home. This battle wears on and on and on, with more victories lately, but it’s length is taking it’s toll. And because as my six-year old daughter will tell you…Mommy has Lupus, and it will never go away.

Filed Under: #SUCKITLupus

My New Ride

September 22, 2011 by 10 Comments

I own a wheelchair.

I’m not sure how it happened. One minute my husband and I were discussing renting a wheelchair for an upcoming day at Disneyland, and the next thing I know I was checking with my insurance company on coverage and debating between wheelsize and how easily a particular chair folded and its exact weight so I can lift it into a trunk.

My new wheels!

We have found ourselves renting wheelchairs a lot lately. If there are any events where I need to walk more than say, a block or so, I really need one. It’s not that I can’t walk, it’s just that I get tired very quickly and a long walk can potentially ruin the rest of my day.

Just to give you an example, while in San Diego for the annual BlogHer conference we took  a cab to the ballpark to catch a Padres game. I figured I could walk from the cab to our seats and then sit and be fine.

Wrong.

The walk from the cab to our seats was further than expected, and while not too far, it certainly wiped me out. And because I was so exhausted I asked to leave a few innings earlier than I would have liked. No fun.

So it seemed to make sense to rent a wheelchair for the rest of the conference. Walking around a large conference hall just wasn’t going to happen. Not even with my new, awesome cane.

We’ve also rented a wheelchair at Universal Studios, Walt Disney World, and Six Flags Magic Mountain. That’s hundreds of dollars in rentals. So it makes perfect economic sense to buy one, with help from our health insurance.

It just doesn’t make sense to my heart.

I don’t want to be sick enough to own a wheelchair. I don’t want to need one for nearly every ‘event’ that comes up in my life. I don’t want to fold it up and put it in our trunk and have my husband push me around forever. So sure, while it makes all the economic sense in the world, it just plain hurts.

My daughter is now talking about getting her American Girl doll a wheelchair. My son wants to put flames on the side of my new chair when it arrives. My husband is excited to ‘trick it out’ with who knows what, all while I’m just trying to wrap my head around the purchase.

I’m still working very hard to get better. I have another round of treatment next week, and my many medications appear to be helping. So I’m excited that I am making progress, however it doesn’t feel like ‘progress’ when I am buying yet another accessory of the disabled.

It is giving me an idea for a goal though…to makes sure, sometime soon, that our new investment becomes something of a bust. That it ends up collecting dust, or holding my clothes in a corner of a room, because I’m out running circles around everyone using my able, strong, healthy body.

A girl can dream, right?

Filed Under: #SUCKITLupus

I Still Have The First Lady’s Back…Do YOU?

September 15, 2011 by 24 Comments

Childhood obesity has become an epidemic in the United States. The Centers for Disease Control and Prevention report childhood obesity has more than tripled in the past 30 years and in 2008, more than one third of children and adolescents were overweight or obese.

Because of this and many more reasons, First Lady Michelle Obama has initiated several programs to help America’s kids.

Let’s Move! is a “comprehensive initiative, launched by the First Lady, dedicated to solving the challenge of childhood obesity within a generation, so that children born today will grow up healthier and able to pursue their dreams. Combining comprehensive strategies with common sense, Let’s Move! is about putting children on the path to a healthy future during their earliest months and years. Giving parents helpful information and fostering environments that support healthy choices. Providing healthier foods in our schools. Ensuring that every family has access to healthy, affordable food. And, helping kids become more physically active.”

Seems fairly reasonable, right?

Well apparently this is anything but reasonable to the right-wing blogosphere, that exploded today upon the news the First Lady and Darden restaurants were working together to change kid’s menus and make food healthier at their places of business.

In just this one blog post by the Daily Caller, Mrs. Obama was called ‘the first hoe,’ ‘moooshell,’ and there were numerous references to her ‘fat ass’ as well as allegations she was trying to take away everyone’s french fries.

Then over on twitter there were numerous entries calling her various other names as well as accusing her of attempting to be the country’s food police.

Apparently attempting to help the children of this country makes conservatives angry.

Way back in 2007 I made a promise to Mrs. Obama. In a two-page spread in the Chicago Sun Times I told her that if she would support her husband running for President, we Moms would have her back.

The headline should read: WEANED

Little did I know how exhausting that promise would be.

Our nation’s First Lady has been attacked for everything from her clothing to her bi-partisan initiatives. She has been called every name in the book and then some, and has endured some of the most ugly racial comments I have ever seen. And her attempts at getting kids to exercise and eat healthy have been no exception.

It seems that no matter if she is helping military families or children, she is the target of some of the most hateful rhetoric I have ever witnessed.

It’s time we Moms, women, and men, stepped up our defense of Mrs. Obama and her projects.

For the record (and I’ll try to be as clear as possible for the idiots in the crowd) the First Lady isn’t trying to take away your junk food. Her agreement with restaurants like Olive Garden and Red Lobster is putting more options on the kids menu, not taking them away. You can still get your child a sugar and fat laden soda and fries, but you will also have the option for something like a fruit or vegetable.

There is no mandate to get rid of things like burgers or fried chicken or Cokes, just the addition of healthy choices.

The First Lady has never said you should never have junk food, ever. She has consistently and clearly said even she loves the occasional hamburger or piece of cake…but in moderation. She lets her girls have the occasional fry and chips and cookies…but in moderation and as part of a healthy, nutrition based meal.

She is not attempting to force you to feed your kids nothing but broccoli. She is not attempting to take your favorite, fat-filled food off the local fast-food menu.

Don’t believe me? Take a look at the programs yourself. This comes directly from the White House press office:

Kids’ Menus – changes starting now and to be fully implemented by July 2012
· Guarantee a fruit or vegetable will be the default side for every kids’ menu item at those restaurants offering a default side on the children’s menu: Bahama Breeze, LongHorn Steakhouse and Red Lobster.
· 1% milk will be the default beverage, provided automatically if no alternate beverage is requested. Milk will be prominently promoted on the menu and made available with free refills.
· Food illustrations on the menu will promote the healthy choices for meals and drinks.
· Healthier menu options will be more prominently displayed when possible.
· Carbonated beverages will not be displayed on children’s menus.
· Improve the nutritional content of one or more children’s menu items to provide equal or less than 600 calories, 30% of total calories from fat, 10% of total calories from saturated fat and 600 mg of sodium.

Calories/Sodium Footprint Reduction – changes to be implemented by 2016 and 2021
· By 2016, reduce calories by 10% and over a ten-year period by 20%.
· By 2016, reduce sodium by 10% and over a ten-year period by 20%.

See? There is no taking away your fries. You, as the parent, get every opportunity to do exactly as you want with your kids and can make any decision you damn well please as to what lands on their plate. Want pop? Order it. Want DOUBLE the fries for your kid? Go for it. Mrs. Obama hasn’t taken any parenting decisions out of your hands and is certainly not trying to parent for you.

Now that we’ve cleared that up…I have a few questions for you. Why in God’s name would you be against this? Why do you have issues with a program attempting to give you more menu choices for your kids and offering additional, healthy options?

Do you hate fruits and veggies? Are you a fan of childhood obesity? Do you want only junk food offered to your children?

Or do you just hate the Obamas and everything they try to do, good or bad? Or is it even worse than that…do you hate a smart, beautiful, strong black woman telling you how you can help raise healthy children?

I look forward to your answers, because right now all I see is ignorance, hate, and sheer contempt for a woman who is rocking her role as First Lady…and you had better believe I still have her back.

Filed Under: #suckit, Feeling YaYa, Stepford Crazies

Embarrassed By That Mom On Stage

September 14, 2011 by 8 Comments

When a mother takes the national stage, the media is never fair.

There are the expected barbs at her parenting skills, her career, and that well worn question ‘how does she do it all?’ heard over and over again so the drum beat of sexism becomes more of a dull thump in the background noise of our lives.

I do not envy any woman running for office in this day and age. As we have seen time and time again the press asks questions of a woman they never seem to ask a man, and the question of what sort of mother she may be almost always comes into play.

As we hear more and more about Congresswoman Michele Bachmann and what she believes, I feel the need to offer a counter perspective. Taking a cue from Bachmann and former Alaska Governor Sarah Palin, conservative women seems to be raising their voices to promote their brand of ‘feminism.’

I love that they are speaking out in what I have always found to be a very patriarchial society. I love that they are running for office and bringing attention to the issues they care most about. So I am quick to point out that my issues with their campaigns have nothing to do with their sex, and everything to do with their stances. They use the word ‘feminism’ a lot-and taut their motherhood in order to push their agendas. Which is exactly why I think it’s important to note this is not my kind of feminism or motherhood.

It’s something I am, admittedly, not intimately familar with. Talk of being ‘submissive’ to husbands, protecting the unborn from ‘genocide’ and championing women like Phyllis Schlafly who actively worked to stop the Equal Rights Amendment. Yes, Bachmann and her fellow conservative feminists revere a woman who said ‘By getting married, the woman has consented to sex, and I don’t think you can call it rape.’ Yup, these new conservative feminists bow down to Schlafly who believes if marriage is to be a successful institution, it must…have an ultimate decision maker, and that is the husband, and she believes it is a women’s role to support men in their positions of higher authority through altruism and self-sacrifice.

These ideas are the direct opposite of feminism, unless of course the woman chooses to live this way and the rest of her female sisters may choose to live another.

No, this Bachmann, Coulter, Ingraham, Palin, Malkin feminism is certainly not my kind of feminism. And it is NOT the way I mother.

Why is that important? After all we all mother differently, right? It’s important because right now the Mom I see hogging the spotlight is promoting a dangerous and disgusting type of motherhood I want to make sure does not go main stream -and to show the media we’re not all like this.

As a mother, I will not be teaching my children there is something ‘wrong’ with being gay, lesbian, bisexual, or a transgendered person. Despite what you may see during the debates, being a good Mom does NOT include demonizing the LGBT community or supporting any measures that would force to change the sexuality of any person. I would also go so far as to say a good mother would be addressing the unusually high suicide rates of LGBT teens in her community.

As a parent, I would also be doing anything I could to protect my kids. While there are many different view points on vaccines, at the very least we can all agree that scientists and studies should be used when making your decision to vaccinate. What should not be used are scare tactics, misinformation, and rumors. As a mother I educate myself as best I can when it comes to decisions I have to make, and I certainly do not tell a national television audience lies that could cost lives. Shame on Bachmann for resorting to the gossip whispered at PTA meetings about the HPV vaccine instead of the facts.

Another job I have as a Mother is to show my children we are all created equal, regardless of skin color, religion, ethnicity, or gender. Recently Bachmann showed ignorance at best and racism at worst when she said immigration in America worked very well under the Asian Exclusion Act. Yet another example of a mother taking center stage and spouting racist rhetoric, while many of us watch from our living rooms screaming at the tv ‘NO NO NO SHE IS NOT LIKE US.’

These are just a few examples of just how different one ‘feminist’ mother is from the next, and how those of us who are not ‘conservative feminists’ disagree wholeheartedly with the policy and stance of the current crop of mothers talking politics.

So keep in mind as you see female after female take to the cable news shows calling themselves feminist pundits and politicians that these women do not speak for me. They do not speak for the women I know who call themselves feminists, truly fighting each day against the patriarchy (not submitting to it) and working hard for equality. An equality that includes more than one path for women and girls who wish to be anything they want to be, under terms they, themselves, set.

Because despite all the rhetoric you hear from these women on stage and tv claiming to be champions of all females, the absolute only thing we have in common is the name ‘Mom.’

Filed Under: Feeling YaYa, Holding Court, Stepford Crazies

Dear DC, This Mom Is NOT Impressed

September 7, 2011 by 19 Comments

I am really ready to declare all of Washington incompetent.

I know, I know, this sounds like everyone…and anyone right now. However the current state of affairs has me more frustrated than any Mother really should be about politics. It has been said many times before, but I must say it again: these politicians are acting worse than my children.

And instead of me making cutesy comments about giving them all a ‘time out’ or telling them to ‘play nice’ I’m going to speak with a bit more adult directness:

Enough already.

I’m not impressed that our President’s love for America was questioned on a national stage by Republican candidates for office during tonight’s debate. This is not a time to pander to the lunatics and fringe of the country, this is a time for solutions to very serious problems. Calling into question if our PRESIDENT is pro-American is not only ridiculous, but a time waster in this day and age.

I am also not impressed that some Democrats might sit with some Republicans at the President’s job’s speech. Are you kidding me? This is the best bi-partisan move you can come up with? My daughter’s 1st grade can manage to sit boy, girl, boy, girl without tantrums and you’re proud you can sit with someone from across the aisle? Whoopdefuckingdo.

It really is no wonder we can’t seem to pull ourselves out of this economic crisis and get the country moving again. You all are throwing insults back and forth and getting giddy when you sit together. I’m sorry but I expect better from adults tapped to lead this nation.

Speaking of which…this whole ‘attack on science’ nonsense that is going on needs to stop. If only to show the children of the country that our adults are not babbling idiots. If you want to attack how best to deal with what scientists discover, have at it. But attacking science is beyond the pale. And has me more worried about the state of the US than anything else.

We have become a people who demonize teachers, teamsters, scientists, academics, and even first responders. We have sunk to making fun of the President because he gets too wonky, and rail against educators because they dare ask to be compensated for taking care of our most precious resource.

The poor have become mockable as ‘Get a job!’ echos throughout townhalls. The sick and disabled shunned and left for dead, their ailments considered a sign from God in the survival of the fittest.

And in Washington, DC these topics of discussion might as well be the same as what happens when your family gets together for the holidays; with no one agreeing and your crazy uncle making veiled racist and sexist jokes while carving the turkey.

The thing is…Congress and these Governors aren’t supposed to be like my family gatherings or a townhall. They are supposed to be a bit better than that. Knowing some of their constituents might be a little off their rockers, and making sure they are sane and at the very least leaning towards the middle- so that everyone has a voice.

No. Instead I have to explain to my six-year old and eight-year old why the man on the tv hates the leader of our nation so very much. And why the woman on the tv hates gays and lesbians and transgendered people. Even they pick up on the not-so-subtle bigotry behind their nasty words, dripping with a polite tone.

I shouldn’t have to tell my kids that some people think others do not deserve to have the same rights, and I sure as hell shouldn’t have to explain to my kids why some people think their mother doesn’t deserve the benefits she receive to feed and clothe them. Or have to tell them that when the big earthquake hits our California home, some of these people on stage don’t want to send us help.

It is no longer a matter of wanting to put these politicians in a time out, they needs to be expelled from playing. I am embarrassed at the state of discourse and political policy in this country and disgusted at how far we have sunk.

I am not without fault. My anger at how ridiculous this has all become bubbles over frequently, pushing me to lash out at the uneducated and at the conservatives I encounter.

How dare they. How could they. How stupid are they.

When science and reason fall under attack, my manners escape me quicker than I’d like.

I wish I felt some remorse, or that I could tell my kids I am sorry. Instead I find myself telling them that Mommy needs to fight harder for them. Yell louder. Demand more. Demand better.

I hope I am teaching them that some things you just don’t tolerate. You stand up for the poor. You stand up for the sick. You stand up for those being denied basic rights.

You do not settle on these issues. There is no compromise for common decency and common sense.

I also expect others, in Washington, to do the same. It is time to say enough.

This has gone far enough.

Filed Under: #suckit, Holding Court, Stepford Crazies

Dancing with the Stars: A Great Opportunity to Talk to Your Kids

September 4, 2011 by 23 Comments

@aaronvest your daughter would like you to tie her a ninja bow
I didn’t exactly plan on discussing ‘transgender’ with my children this morning. But it seems a movement of Christian mothers has forced my hand.

A group called the One Million Moms is apparently confused as how they will ever explain Chaz Bono to their children. Now, I’m not sure if their speaking skills are poor, or if their children are bad listeners, but whatever the problem these mothers can’t seem to grasp how to discuss transgendered with their wee ones. Why? ABC has cast Bono on this season of Dancing with the Stars.

Apparently this means some God-fearing women need to sound the alarm that Satan has entered their tv and for the sake of the children, this abomination must be protested. Or something.

On a recent news appearance these up in arms Moms spent the entire segment exasperatedly saying ‘But WHAT will I TELL my CHILDREN???!!!’

Might I suggest they start with the truth? And a simple definition? This really is NOT that hard.

I decided to have the discussion with my eight-year old son first, because I really didn’t want him hearing about any of this anywhere else. It seems if I left it up to groups like the One Million Moms or Fox News, he would come out of it thinking there is something wrong with being transgendered or gay or lesbian or bi. He might even do what kids do, and go along with what ‘everyone else’ was saying, so as not to seem like an outcast.

Being a responsible mother, I see it as my job to educate my kids on everything. The good. The bad. The ugly, and the very ugly- like hate groups parading as Moms concerned about the welfare of my kids.

But as always, my kids are smarter and more kind than most of the population.

So they don’t want him to be on a dancing show? Because he’s being himself?

Well, it’s not that simple. They think he is defying their God. And that you seeing him will somehow screw you up.

Me? Why me? That’s stupid.

But I know how I feel inside. And he knows how he feels. Mom, these people are really dumb.

Yes, I know. But they really think it’s bad.

If I saw one of them I would kick them.
The boy child has a battle to get to cc: @aaronvest

Then we had to have a discussion about why kicking and hurting someone is just as bad. That’s not to say I don’t sympathize with my son. He was frustrated just trying to understand why anyone would have a problem with Chaz Bono. In his eight-year old mind, kicking seemed reasonable for these people intent on hurting someone else.

The conversation with his six-year old sister didn’t fare much better.

It seems these days any talks about love or marriage or boyfriends or girlfriends elicit nothing but giggles from her. So much so that as her father descended the stairs this morning as we talked it over she giggled and hid her face and demanded we continue our discussion later.

I obliged, and then picked up the discussion again with a different tack…

…and we would never make fun of or laugh at anyone different from us.

Of course not Mom. And if I hear someone else doing it, I stand up to them and make a new friend.

Yes. Very good. So what do you think of transgendered people or the people who are upset over this man on this show?

Mom…this is so stupid. I don’t know why we even have to talk about it, except that it’s because they are stupid. Everyone knows that everyone is different. I’m different. This guy is different. Dad is different. Nicky is different. Everybody is different.

For the record, Nicky is our dog. But her words remain true. And to my children, making a big deal about our differences, enough so to bar your children from seeing or experiencing these differences, is so alien to them that I got a lot of eyerolls and ‘why are we even talking about this?’ looks.

So thank you One Million Moms and Fox News for making a big deal out of all of this. It gave me the opportunity to discuss the transgendered community with my children. It gave me the opportunity to remind them that everyone is different. It gave me the opportunity to discuss bigots, hate, and evil. And it gave me the opportunity to show the world that some of us mothers are not afraid to talk to our kids and we know exactly what to tell them: the truth.

Filed Under: Count Waffles, Feeling YaYa, Princess Peanut, Stepford Crazies