Sometimes you just know Santa did well…
And little ones are happy…
And the husband got what he needed too…
And then Mom cried tears when she got hat racks, home made by each of her loves, for her Magic Hats as her hair continues to fall out from chemo…
I hope your holiday was as perfect as ours.
Hats from just some of Aaron’s family, with one special hat in honor of Aaron’s family thrown in for good measure. You can see the Magic Hats story here.
This snuck up on me.
I’m not going to lie.
And I have been so overwhelmed with what has happened, I frankly have not known where to start in saying thank you, or even showing you what has been happening in my mailbox and on my head.
It started with a few hats in the mail from my Mom. Yes, my Mom sent some hats. In my world where my Mom sends things frequently, this is totally normal. Then my Aunt sent a hat along with some things for the kids. Hmmmm, my Aunt and Mom must have been shopping together.
Again, entirely normal. So I didn’t think anything of it.
And then, suddenly, Howard (my mail carrier) knocked on my door to deliver a bunch more boxes and envelopes. He laughed and made some joke about how popular I was.
Hats. It was more and more hats.
Some came with totally inappropriate notes. Others with heartfelt poems. Some just with words of encouragement. Some with nothing. Absolutely nothing. Just a hat in a box.
I begged Aaron to tell me what was happening. He had to know, right?
He got that shit-eating grin on his face, and denied knowing a thing. I had to thank whomever did this. I had to explain what it felt like, as Lupus took yet another part of ME…my pretty red hair…and turned me again into this person I didn’t know or recognize.
But who? Why? What in the hell was going on?
Either fearing one of my steroid HULK SMASH moments or just wanting to help me say ‘thank you’ too because even HE was stunned by the amount of mail coming into the house….Aaron broke down and told me what he had done.
Aaron and Megan reached out to all our friends and family and told them about my hair:
In all seriousness, Erin (@QueenofSpain), in her valiant fight with Lupus, is doing battle with new treatments with a nasty side effect that is most likely going to cause her to lose her hair. We don’t know if she will lose it all, just some, or somewhere in between, but in any matter, it’s yet another frustrating part of all this, and it’s already half gone.
Erin could use some hats to keep her warm and make her feel beautiful. This is where you come in. Do you knit? Do you crochet? Do you sew? Do you shop? If so, it would be lovely if you could send a hat her way. Hats can be fashionable, cheap, silly, or otherwise. If you have an old hat that has sentimental value and you want to pass the love on to her that would be great. Send her a Colorado Avalanche cap for yucks. It’s not just about hats for her head but love for her heart.
This made my heart skip a beat. First, that they knew I was trying to struggle quietly about my hair. Second, that Megan had, once again, helped out in her organizational way. She rocks like that.
But really, because I can’t lie any longer and it’s stupid to even try to hide the vanity issues that come with this…it was the thought that Aaron doesn’t see me as growing uglier with this disease- steroid fat, hair loss, stretch marks, the works…but instead he was seeing courage. And beauty. I don’t know how anyone can see that in THIS body. This body that is NOT mine, but he knew EXACTLY how to take any fear I had about it and turn it into hope. When your husband loves you for YOU, it’s such a wonderful thing. I don’t know how he does it. I really don’t. Here I am, watching hair after thin piece of hair come out with every brush stroke, and he’s thinking about how hot I look in a cloche hat. When your friend will do anything for YOU, not your twitter follower count or your ability to make really awesome Christmas cookies…it’s such a wonderful feeling.
So now that I know what is going on, and can better understand what has happened…I want to say thank you. But thank you doesn’t seem like nearly enough when poor Howard is here every single night delivering box after box after box.
So I thought I would feature a few hats each Wednesday so you can see the wonderfulness that has come to my home. The hand-made, the thoughtful colors, the totally rocking, shopped for with STYLE, amazingness.
Kicking it off this Sunday (yes, I realize it’s not Wednesday but I couldn’t wait much longer) just so you can get a good giggle, here is the Detroit Lions TURKEY hat sent to me by none other than Sarah –
and one helluva Viking girl hat sent to me by Undercovermama (and modeled by my daughter who thinks this hat is so awesome she won’t let ME wear it…dang it).
And then a photo, just for good measure and fun, that has my daughter and Alana trying on ALL my new hats and seeing how many they can balance on their heads. Goofballs.
As for my hair? It’s thin, but hanging in there. By a thread. Now I really get what that means. I’m very thin on top and not entirely comfortable going out without a hat on. I can still easily cover the thin spots on top. My doctor actually offered me Rogaine. He said while now my hair may not look that bad, in a few months when everything really starts kick in, that’s when I’ll wish I had started Rogaine. Aaron and I talked about it and we really don’t want to add another chemical to my system, so we’re just going to stick with the hats. And if it gets really bad, maybe I’ll shave my head like he does. We’ll see.
There is a real possibly that Monday the doctor will up the low-dose chemo that is causing the hair loss. Or not. I may stay right where I am at, and watch is slowly slllllloowwwly fall out strand by strand.
I’ve officially caused Aaron to go buy more drain-o for the upstairs sink, where I brush my hair. It’s nice and clogged up there. However the same week I hugged two people, both wearing all black, and I didn’t get a strand on them. Strange considering every time you encounter me you I usually leave my calling card somewhere on you…a nice, long, red hair. So I just don’t know how all this will go. Will it get better? Worse? No idea.
I can tell you the hats make me FEEL better. I have a million to choose from each morning before I walk out the door and LOVE IT. I have always been a hat girl. And now to have hats with love behind them? Heaven.
So from the top of my balding head to the bottom of my toes: thank you.
It seems so small to say thank you. Like it means nothing, after you all done so much. But truly…thank you.
Now I’m off to pick out the right, warm, cute, full of love hat to put on my head before riding lessons for my daughter. Which one do you recommend?
As a parent, I don’t know many more scary things than a sick kid. Add in a chronically ill mother and what is usually just part of childhood becomes an uncomfortable conversation.
Mom, that stuff the doctor said I had to take…that’s the same stuff you have for Lupus.
You mean the prednisone? Yes. But it’s just a steroid to help your chest. You will only have it for three days, I had it for many, many months and lots and lots more of it.
But I don’t have Lupus, right? So why would I have to take it, if it’s for Lupus?
No honey you don’t have Lupus. It’s a steroid they give a lot of people for a lot of reasons. You just have an infection in your chest, so they are using it very, very quickly to get rid of the infection.
But Mom it’s for Lupus.
No, it’s not. A lot of people take it for a lot of things. Lupus is just one of them- and look, I am not even taking it right now. I’m getting shots and IVs with a different steroid. There are all kinds of steroids. This is just one, and this one you will take for only three days. That’s it. Then you are done.
But it’s not because of Lupus, it’s because of my infection….
Right. Exactly.
And thus the conversation went. And I realized just how much those little ears hear. Just how much they have had to learn about things they shouldn’t be bothered with at this age. And just how much more I want to hug them and protect them from this stupid, horrible, life changing disorder.
#suckitlupus
For those who may not know, I have a bit of a science geek son. He’s eight-years old and could (and sometimes does) spend Saturdays in his pj’s happily watching Professor Stephen Hawking documentaries and Through the Wormhole with Morgan Freeman. Mythbusters, UFO Hunters even. But mostly, if he had to choose, he’d find some documentary that just showed planets and solar systems and the vastness of outer space. Black holes make him jump up and down in front of the tv or computer, he can rattle off theories about dark matter and how a star is born, and he will talk your ear off about the Big Bang and his own ideas about how Earth came to be.
But with this geekdom, comes the soul of an artist. He cries on airplane rides as he stares out the window because it’s all “just so beautiful Mom.” And he lounges with his arms behind his head, stares up at the sky, and makes me promises.
Big promises.
When he was four Jack informed me he was going to retrieve the Mars Rovers, Spirit and Opportunity, from the red planet and bring them back to me. He firmly believes they must come “home.” He remembers that promise, and talks about it frequently as though it’s just fact. He will someday find a way to bring those rovers back to Earth.
I believe he will do this. I believe he has the mind and will to accomplish this simply because in his heart, their home is here near us. Not just on Earth, but at the NASA Jet Propulsion Laboratory in California.
I have this amazing mix of a sensitive, scientist man-child. Who expresses himself through writing and art, yet gets very upset at the idea we have yet to get a person to Mars because human eyes must gaze upon the beauty of this vast red and dusty place. He actually gets so upset about this, and so excited at the possibly and joy of being able to one day see outer space he gets tears in his eyes. He wants to explore the heavens above so badly but is trapped in that “but I’m only a kid” world and he wants to gaze upon the amazingness that is space so badly he has trouble telling me why it’s so important…other than “but Mom, can’t you see how beautiful it is?”
Enter a simple art assignment at school, where he got to combine his two loves and create (along with his 3rd grade class) a silhouette of himself and his own depiction of a planet he imagines. Innocently I tweeted, as many proud parents do, his very first gallery debut. His art, hanging on the wall of our local comic book shop Brave New World Comics, and the lovely wine and cheese (and cookie and milk) event for the school.
My son’s piece sold to the highest bidder (his biggest fans Mom and Dad) and we enjoyed the evening.
Something extraordinary then took shape…I got word from New York City that one of my favorite twitter followers had seen that tweet, that innocent and proud parental moment, and she just happens to work at the Science House Foundation.
The Foundation’s mission “…provides funding to organizations that help to further science and mathematics education worldwide, and creates programs that provide schools with resources and educational experiences to spark the imagination.”
Then came a letter, with a check, officially acquiring my son’s artwork as their first piece to hang in the Science Foundation’s new space in Manhattan as they start a collection of “science art.”
Jack was glowing. His dreams were becoming a reality. He could combine his love of art and science and could not only show the world beauty, but discuss the vast universe. My amazing child could truly be himself: an artist, writer, and critical thinker with a love of science and all things in the mysterious cosmos.
Rita J. King of Science House tells me that is exactly their mission, to help kids realize they create the future. Well Rita, James, and the rest of the Science House Team- not only are you helping kids realize, but you are fueling their passion. Tonight Jack said, “Mom, I can make money…like a job…with science and art. This is like some sort of dream, isn’t it?”
No. No my dear it’s not a dream. It is real. It is fact- those solid, scientific tidbits of info you love so much. And it is beautiful.
In short, it’s you.
Thank you to the wonderful SCVi staff for inspiring my son to be himself, and thank you Science House Foundation for helping an eight-year old realize his future and dreams can combine science and art – and they are possible.
So it has finally happened.
I grew up as a Mother. I finally allowed (yes, I use that word on purpose) my children to stay the night some where other than a relative’s home. They had sleepovers.
This may not seem like a big deal, and you are probably laughing at me right now. But please understand that I am a woman with very serious trust and control issues, and in order for you to take my babies from me for any length of time I had better know you not only very well, but understand your house and its inter-workings.
No, I didn’t run full back-ground checks but I figured with one of the homes having a law enforcement officer around I was ok.
To no one’s surprise my daughter, the youngest, ended up going on her sleepover first. She’s a bit more brave in things of this nature…ok in anything…and when we discussed having to go potty, brush teeth, wake up in a strange place and it being dark, blah blah blah…she literally rolled her eyes at me and said ‘Mom, I get it, geez.’ Then, knowing her Mamma was about to give her trouble for her sassy mouth she threw in “I mean, I will be polite and I will not be afraid and I will find her Mom or Dad to call you if I want to go home. But I won’t want to come home so do not think I will come home. Because I am staying the WHOLE night.”
My son, on the other hand, only whispered to me a few times about what to do if he needed something in the middle of the night and if I packed his extra underwear and maybe just a ‘tiny flashlight’ and his stuffed turtle. But to make sure the turtle was at the bottom of the bag because he probably wouldn’t need it.
They, of course, had the time of their lives and stayed up late and played games and ate junk food and did all the things kids should do at sleep overs. Both were returned to me safe and sound and can’t wait to do it all over again.
We’ve had their friends stay at our house before, so it wasn’t too big of a deal to them, or the first time they got to have a sleep over…but when they left our home, bags packed, it was a big deal to me.
I had to trust that everything I had taught them, from manners to emergency situation scenarios, sunk in. This from kids who can only seem to half remember to flush a toilet or put their shoes away.
By some miracle I slept through the night for each of their slumber parties. Ok maybe not a ‘miracle’ but the Xanax didn’t hurt. And I was so proud picking them up, hearing from the other parent what a great kid I had, and then hearing the non stop chatter from the back seat about what they did and how late they stayed awake and how cool the house was and on and on and on.
In other words everyone survived, everyone had fun, and I even felt confident their father and I prepared them.
I know, a whole post on something so simple…I’m crazy, right? Wrong. I just love my kids and after the hell our family has been through letting them be away from my side is a difficult but necessary step.
It means life just might end up normal after all.
It is, again, the wee hours of the morning and my mind and medication have me awake.
Since I have the ear of so many of you who suffer from a chronic illness, I felt it time we talk about that thing no one ever wants to talk about when it comes to chronic illness: living daily as someone you love suffers.
Living.
It’s all very taboo to talk about this, although I’m not sure why. Probably because it’s so intimate. Because it’s so personal. But let there be no mistake: chronic illness will change everything.
But just like everything else, it’s how you handle that change that makes all the difference in the world.
(photo by Megan Hook Photography)
I am thankful my partner is my best friend and I can talk to him about what ails me and what sustains me. He still rolls his eyes in all the right places and doesn’t hold back when I need to be kept in check. Something a good partner will continue to do when you are laying in a hospital bed, your own bed, or just at home bitching and moaning about taking your pills and injections. You don’t get off the hook because you are sick, in fact, you might get that eye roll a tiny bit more often because he knows damn well you know better than to be pulling whatever crap you are trying to pull as staying healthy is what is most important.
I am thankful he is patient and kind, even when my steroids make me otherwise. ( I type that with one hand as I open a pill bottle with another, knowing that I need to keep this mood in check before the rest of the family wakes up and comes downstairs. This way they don’t find me in a puddle of tears and tissues OR scowling and banging hard on the keys of this poor, beat up laptop…weary from having words shoved in and out of it as my emotions tug and push and pull. )
But I am forever in love with this man who has put myself and his family first as we battle this long-term war together. Having him has made all the difference.
As the tears fall on my keyboard I am letting go of my worry about the future, about our time together, about just how many more test results or lab work ups or doctor sit-downs we can take.
I have no fear.
He is by my side through better and worse and that makes all the difference. I will never have to do this alone, and I will never have to face this without holding his hand. Or hearing his laugh. Or giggling as I lay with an IV in my arm while he sweet talks the nurses into bringing me my drugs early.
Don’t let your disease or disorder fool you. It WILL try you and your relationship in ways you never envisioned when you heard that first diagnosis and muttered ‘pfft, we can do this.’ Time ticks slowly as you wage war, and wears you down. What I wouldn’t give to have the last 18 months back to be lived as a healthy person, just as thankful for those by her side. Or to know then what I know now, so I could prepare.
But when those dark days come, know they are only temporary…even if temporary means months. Know that they will pass…even if passing could means years. Know you will come out the other side stronger, smarter, and with a much bigger appreciation for the person who was your primary caregiver, your cheerleader, your biggest fan, and your biggest worrier and warrior.
I wish you all such a partner as you wage your war, because I know I am one of the lucky ones. And if I can find room somewhere between our son and our daughter in our big ‘ol bed, I’m off to lay my head on his chest and soothe the fight in my body for just a bit longer with his heartbeat. Only he has that power…because I gave it to him long ago and not once has he wavered, and not once have I dreamed of taking it away.
Ok, maybe only a few times when he insisted he push me a bit too fast in the wheelchair just to see if we could go downhill at TOP SPEED or his repeated attempts to show my ass to the world out the back of my hospital gown.
I love you, Aaron.
If it’s any consolation they should drop my steroids back down next week and if you are lucky I might not be so marshmallowy. But don’t get your hopes up.
Smooch
Believe me, I know. I have them too. I have cousins who call me a socialist hippie and I have uncles who still yell ‘Run N*gg*er! Run!’ during a football game.
Now I have the luxury of being far, far away from family in California…eating my elitist, ivy league educated turkey…while I’m sure they shot and killed theirs from Sarah Palin’s helicopter. But whatever our differences, family is family, and sometimes they all have to be in the same room together.
First and foremost prepare the kids:
Of course we know that sort of talk is wrong, and we would never speak like that at our house, our school. I’m not sure why they believe that way, but they do, so we just try and be as polite as possible and tell them as nicely as possible they are offensive and wrong, and then we go home. But hopefully we won’t talk about those sorts of things at all and we can just discuss how nice the fall leaves look and how great you are doing in school, ok?
Of course that will lead to the discussion about their hippy, progressive, charter school….but let’s just take one issue at a time.
Luckily the great folks at NPR have your crazy Aunt that sends all those crazy e-mail forwards covered. You know, the ones in all caps that claim Obama is a secret Muslim and the Democrats are really building concentration camps to lock away all the Christians…or something. Check it out:
You should start by telling tell him that the emails are nearly always wrong. PolitiFact has checked 104 claims from emails and rated 80 percent of them “False” or “Pants on Fire.” Only 4 percent of the claims have earned a “True.” …
The chain emails cover a few broad themes:
Obama is unpatriotic! E-mails have said Obama complained that the troops were whiners (Pants on Fire), that he refused to say the Pledge of Allegiance (False) and that he wants soldiers to take a loyalty oath to him rather than the Constitution (Pants on Fire).
Democrats have passed a secret tax! Some recent emails claim that because of “Obamacare,” monthly Medicare premiums will more than double by 2014 (Pants on Fire) and that home sales will be taxed 3.8 percent (Pants on Fire) to pay for the new health care law. Another one in this genre says Obama’s finance team is seeking a 1 percent tax on all financial transactions (Pants on Fire).
Perks of office. Another theme in the emails is that members of Congress get excessive perks. The emails say members of Congress get full retirement pay after one term (Pants on Fire) and that congressional staffers and members don’t have to repay their student loans (Pants on Fire).
The government is coming for your guns/health data/light bulbs! Some of the conspiracy theories are truly wacky. During the health care debate, one claimed that under the public option for health care coverage, people would be implanted with data-storing microchips (Pants on Fire). A more recent email claimed the government was mandating that everyone get rid of their existing light bulbs (Pants on Fire). Another email said you must list your guns on your tax return (Pants on Fire).
Not enough to convince your Grandpa that he’s NOT about to face a death panel? Try this one on for size…the DCCC Thanksgiving Cheat Sheet! it’s got everything from Health Insurance Reform (they call it ‘Obamacare’) to how to really appease your far right Tea Party relatives with FACTS:
EXTREME AGENDA TO APPEASE TEA PARTY
· Three times, House Republicans pushed our government to the brink of a shutdown to put their radical agenda ahead of the American people’s interests. · Voted to repeal health insurance reform; Voted to defund NPR, PBS and Sesame Street; Voted to classify pizza as a vegetable for school children; Voted to defund Planned Parenthood and stop them from offering cancer screenings; Voted to protect companies that do business with the Iranian regime
· Pushing plan to privatize Social Security · Forced the Supercommittee to fail because they insisted on more tax breaks for billionaires and Big Oil at the expense of the Medicare guarantee and creating jobs.
And if that weren’t enough, and things get REALLY ugly, Colorlines put together a nice guide on how to discuss RACE:
Instead of just being reactive, why not be proactive? Start with a question. Use plain language. Set the frame and tone you want. Create an opening for some constructive dialogue. For example, “Did you see that video of the police cracking down on the non-violent student protesters?” Or, “What do you think of the plans to shut down the neighborhood health clinic that serves mostly low-income people of color?”
Remember, if you get flustered, I’m home on Thanksgiving and if you have to, you can tweet me or text me and I will talk to Grandma and tell her that I’ve sat in the West Wing, looked these people in the eye, and they are NOT out to take her money, her 401k, or her guns.
I am a mother. I am disabled. And I have every reason to believe there are good and bad people in government -just like there are good and bad people in the world. In our own families. But at the heart of it all, we want the same thing: the American Dream. We are not that different regardless of if we show up with the big turkey or the vegan casserole. We want to make sure those we love get what they deserve and those we care for are taken care of. We may just not agree on how to get there. But make it clear that no one wants anyone to suffer. I know that one is hard to swallow when we all could swear those conservatives really do not care if we live or die, but I’m going to give them the benefit of the doubt this holiday, and tell them you expect them to give you and their President the benefit of the doubt as well.
The First Lady isn’t trying to take their burgers. She is simply trying to help kids exercise and eat better- right along with moderation in many things she enjoys her fries and her ice cream and allows her kids to have treats just like we do. Her overall goal is to just make sure kids know what brocoli is and that it’s better for them than a chocolate bar. No biggie, right?
Now, with that in mind, and some ammo in your pocket (the factual kind I provided above, not the real kind your Uncle has behind that glass hunting case you’ve told the kids they aren’t allowed to go anywhere near) try and enjoy your family. Give thanks that our country is so diverse that we can argue and not be thrown in jail for speaking out. Tell them you stand by the PEOPLE not the BANKERS (if they dare bring up OWS) and that you would expect they too would be for hard-working citizens, not heartless foreclosure mongers who give out billion dollar bonuses while charging them extra claiming they aren’t making enough money.
And always, always, eat the dark meat. It’s the best by far, and it will piss off your racist Grandpa when you tell him dark is best.
Good luck.
*updated on Thanksgiving morning – it’s been pointed out that I have not mentioned how to handle the ‘gay’ issue with your family. It saddens me because I’d hope that we’ve come far enough where even the craziest of families HAVE GLBT at their TABLE helping cut the turkey, so they’d keep it civil…but alas I am probably giving too many families the benefit of the doubt that they even acknowledge their family who prefer the same sex or are transgendered people…so here is what you do…and buckle up, this is where it gets really ugly:
Listen, Aunt Betty, in our family all men and women are created equal. That means they get all of the same rights you and Uncle Bob do. Now, you might not believe in that, and your God might not believe in that, but this is America- and in America we have many Gods and many different kinds of people. So if you are a GOOD American, you will make sure everyone is EQUAL under the law. Believe me Aunt Betty, if I could take away you and Uncle Bob’s marriage I would…considering he’s been an alcoholic and has been beating you or threatening to abuse you for as long as I was a baby, and why you two get to be married and some of my best friends don’t seems like a real shame in the eyes of the Lord….but I digress. Oh, what’s that? You say ‘why do they have to call it marriage and can’t they just have some civil rights marriage or something?’ …you see it doesn’t work that way for real. Marriage and civil unions come with VERY different rights. In fact, marriage has over 1049 rights while civil unions has 300 with NO FEDERAL protection. What does that mean? It means if Chris and Chris get married in Vermont, legally, and they decide to go vacation in Mississippi…and Chris ends up in the hospital, her partner can’t make her medical decisions for her in Mississippi. There is also the problems with immigration, child support and adoption (think of all those NOT aborted babies that you want to have homes…and the LOVING homes they could go to -instead of the fucked up homes like yours) and many, many other unequal problems. Now yes Aunt Betty, I know, it all comes down to God. But again, this is America…and if I have to tolerate your God- you have to tolerate mine…or my lack of one. Was this nation founded on Christian values? Yes. But our founders were smart enough to know we’d abuse that and put protections in to make sure we didn’t. So please Aunt Betty…go get Uncle Bob another scotch and piece of pie, so you don’t get a black eye tonight and just don’t tell him you voted in favor of same-sex marriage in your state. I won’t tell if you don’t.
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