One Helluva Lesson For Christmas

10:45pm on Christmas Eve and tears were streaming down my face as I helplessly drove around our neighborhood trying to WILL a major store to be open.

Every single emotion leading up to 12/24/2012 at nearly 11pm was pouring out of me. The illness. The pain. The toll on my family. The issues going on in my life unrelated to Lupus, my inability to work, my Aunt being sick, an Aunt I was missing terribly who I lost the year before, other family being too far away…every emotion just exploded and I had to pull over into an empty parking lot to cry.

The lights of the Toys R Us sign in a dark parking lot are depressing as hell when you are the only Mom sitting under them.

Only a few moments before, as my husband and I unpacked the sea of boxes delivered to our door, did I realize the NUMBER ONE gift my daughter asked for was missing. The tracking for said package showed it was ‘in transit’ and ‘should be at your door.’ Yet there was no confirmation it was delivered and no trace of it once it entered the shipping facility on December 12th and was scanned.

The one thing she asked Santa for. The one thing I knew I ordered well in advance and OF COURSE was in one of the gazillion boxes sitting there. Because why would I check? That would be way too smart. This was NOT HAPPENING.

It was also the one thing I totally OVERPAID to get because she wanted a very specific color.

I opened the door to my car and threw up under the Toys R Us sign, which was now turned off. Leading me to believe there was an employee lurking somewhere. And I was entirely prepared to bribe this magic employee with everything in my checking account to let me in to buy a Furby.

A glimmer of hope sprang forth as the puke came out- my brain realizing the lights clicked off means SOMEONE IS THERE but not reaching my stomach in time, which was convinced that after months of shopping online (so as not to setback my recovery) and planning and planning (so as not to overdo it and setback my recovery) I had failed to orchestrate the perfect Christmas for my kids.

Now understand this about my kids and read this with every bit of heart I am going to tell you with: they do not deserve an ounce of whatever God or Goddess I pissed off to turn my life into this series of now comical and always tragic events. The karma or payback or whatever it is that is messing with Aaron and I can not and WILL NOT be bequeathed unto them.

They are too kind. They are too good. They have been through too, too much for small kids.

I would shake hands with the devil himself to ensure they never have to endure another day of the hell chronic illness and hospitals and treatment and surgeries have given me. Sign me up. Send over my soul.

When I realized that toy was missing something in me cracked. And it was not pretty. Life can fuck with me but it will not fuck with my kids. Sure they will have their own experiences that will be successes and failures but it will sure as hell NOT be tied to this life I juggle so they don’t even see the cotton ball and bandage when they walk in the door from school and I have had treatment. I won’t allow it.

Of course there was no employee magically turning on and off lights at the toy store, and I then spent the next 20 minutes driving in a circle around our town crying more but plotting how to GIVE HER that #1 Santa gift without a shred of disappointment.

After a few harebrained ideas I came home, puffy eyed, with a plan where she gets to pick out the color of her toy via her Uncle and Aunt’s gift card – who live on an extremely remote island and can’t possibly find the very rare one she wants – the very moment the stores open. I changed the gift card to read ‘FOR YOUR FURBY’ and shot an email off to my brother and sister-in-law to warn them and then tried like hell to let it go. I had to.

This had to work and it would work because as my son keeps reminding me, ‘Nothing is perfect, ever…and that is a good thing.’

I probably sound insane as you read this. Putting so much stock in a gift from Santa. Wanting everything to be just right when I know it never is. But understand chronic illness is a lifetime of hoping you are doing enough for those you love despite your shortcomings. What I wouldn’t have given to be one of those Moms or Dads who can just go from store to store to store until you find just what you needed on your list and then off you go to another for that other thing.

I’m lucky if I can handle two stores in one day and when I do, don’t expect dinner to be cooked or laundry done or dishes cleaned. There will be take-out and me sniffing shirts before school hoping for a clean pile while nursing swollen ankles and bruises from toes to knee because I dared manage to get groceries and medication on the same day.

Don’t feel sorry for me though, that’s also not the point of this post. This is my life and I am very happy to be LIVING it…I’m throwing this all down in words because I realized that Lupus or no Lupus I wasn’t the only parent or sibling or partner or what not frantic over something this holiday season, knowing FULL WELL we need not be.

Which I could tell was on the tip of both my husband and my father’s tongues as I left the house Monday night but neither dare speak or try and stop me. I was in that non-rational, can not be talked to or reasoned with, get the hell out of my way I will throw a brick through a window and jump through cut glass and sell my body to come home with this fucking toy mode. Know that mode? Been there? Maybe not over a toy but maybe something else? Yeah…you know what I mean.

Of course they were right. Of course I have the most optimistic, sensitive, and sweetest children on the planet who agonized over what they should give each other as siblings so very much it took my son an hour and 27 minutes to pick out three charms. Three charms that he knew his sister would love and that meant something to both of them. Yes, my son spent that long to make sure his sister would be happy and to show his love in charm form to her. And my sweet daughter? Months ago bought her brother a meteorite from a museum she couldn’t afford and has been giving me $1 per week for months to pay me back. Because ‘Mom he just has to have this, it came from space and I can be the one to give him something from space.’

Both frequently checked on the gifts they bought to make sure everything was still in order and when they finally unveiled…well….

Our children just gave each other the gifts they bought for one another. I'm trying not to sob #mykidsrock

…and here I was agonizing and making myself sick over a gift my daughter would receive, just not on the day she expected. She bought the gift card tale with gusto and can’t wait to get the exact one she wants. Her Uncle and Aunt are now heroes (you are welcome) and I am reminded once again that YES life has changed, but life is NOT over. LIFE is not DONE with me and I’m going to still screw up and kick ass and even learn that no matter how much I plan, SHIT STILL HAPPENS. And MOST of it has NOTHING to do with LUPUS! Imagine the hell out of that?!

I need to stop putting so much pressure on myself to ‘make up’ for these imaginary things I swear my kids and husband go through because I am getting an IV all day or because all the pills on the counter scare them. This is now LIFE. For better or for worse- and the guilt needs to leave as do the constant coddling and freak outs because I can’t make that field trip or I can’t volunteer in class or I can’t have that playdate at our house because I’m just too tired today.

It ends now. Before I take what is wonderful about everything that has happened and the bonds growing tighter and the love growing even stronger and I ruin it with trying to make everything ‘perfect.’

Because nothing is perfect. And that really is a good thing. It means we just need to be us, and I need not try to make things happier or more active or anything other than what we can handle and what we WANT to handle and do.

And you know what? I employed that outlook all day and had the best damn Christmas with my family. It was us. It was casual and laid back and odd and silly and surprising and filled with the one thing I know we get right every single time: love. That part has not changed and that part requires me to only be me. Filled with heart for this little family of mine that teaches me more and more every day about what it means to love and what it means to truly be a family.

Happy Holidays to you all. May you love hard and enjoy the pure magic in every moment of life. It won’t ever, ever be perfect, but it sure as hell will be real.

Holidays: Hurting, Helping, and Holding Everyone Close

I am feeling guilty enjoying the many traditions we partake in here around the holidays. ‘Torn,’ maybe is a better word than ‘guilt.’

Tonight our family filled out our ‘wishes’ for our wish ornament tradition and all I could think of were the families whose wishes won’t come true this year, no matter how hard any of us try. There is just no bringing back those we’ve lost. I’ve tried. I’ve tried since I was a child and my grandmother died. If there were a way, I would have found it by now…just out of sheer love and pain.

This year's wishes have been meticulously written and rolled inside - ready for the tree!

For those who are unaware, we are friends with Victoria & Alexis Haller, Aunt and Uncle to six-year old Noah Pozner. Noah was killed at Sandy Hook Elementary School that fateful Friday and I want to make sure you know how to help.

There is a page set up so you can donate directly to Noah’s four surviving siblings. There is also a nationwide effort to help all of the children when they return to school after the break by simply hanging snowflakes around their new place of learning. Making them feel welcome and safe.

I can’t describe what it even slightly feels like to know someone close to this tragedy. Just watching a friend go through this from afar pales so greatly in comparison to what the family is experiencing, that a comparison can not be made. What I can say, is it has made me even more of a believer in the power of GOOD in our community.

Sometimes when it comes to blogging and tweeting and pinning and facebooking we only seem to have two modes: bitch and rally. Right now, we need every bit of rally we can muster. This is one of our nation’s most horrific tragedies, and one of our own has been touched.

I keep trying to make some sort of logical leap in my mind, about how every holiday season we all get a bit down and we all, also, feel that love and magic when we hold each other close. This year…this year is just so much different.

My family is a bit more screwed up than usual. My heart is a bit more torn than it was before children were murdered and I had to explain to my own children things I never want to explain again. My health has this awesome overall outlook but the waiting is unlike any torture on earth…provided the doctor is right.

So much feels broken and I’m the type of person destined to FIX. Control. Fix. Control. Fix.

I’ve let go so much of the control, and am slowly beginning to take back what I can handle…but I still can’t fix. I can’t fix other people, they have to fix themselves. I can’t fix other relationships, they have to fix themselves. I have to let my children become the amazing young adults they are on their way to being, without my overbearing influence. And I certainly can not fix everything our country needs in order to stop another tragedy.

I feel like I tried to take on health care with my own health problems. The election with my gender and my convictions and my determination to see what we all started be FINISHED.

Fix. Control. Fix. Control. From the small to the HUGE it is just what I do. It is just WHO I AM. 

Or is it who I was? It’s as though everything was taken out of my hands, I was forced to take a deep breath, and then just sit and watch.

It’s maddening. And fills me with fear and pride.

I’m doing my best to put my health at the top of the list so I can better care for those around me when they need it and when it’s required. Also because I’ve finally realized the healthier I am, the more I can take back of my life. The real life. Not this half-life. The life where I can be on my husband’s arm at a party, or take care of him after surgery.

Where I can take my children to a mall or a store without a cane or a cart for help walking…the life where I don’t have to space out my pain killers and pills just to be able to drive carpool to or from school. The life where I can even volunteer inside the classroom without worry of a germ or bacteria or infection that will land me in the hospital.

The life I want more than anything else. The life that seems so much more simple after December 14th, because I am even more grateful for what I DO have.

I didn’t think that was even possible. I had become so accustomed to being thankful for surviving what I had been through these past two years that adding to the thanks and gratefulness seemed over-the-top.

But when you can feel your heart being ripped from your chest for a friend who last helped hold your hair while you threw up at a strange karaoke bar in Silicon Valley, you know there is always something more to be grateful for. 

So I’m asking you to rally. No, I’m telling you to rally.

Keep any of the blog drama to yourself. Now is not the time.

Keep any of the usual behind the scenes status updates ‘accidentally’ gone public deleted. Keep the links hidden.

Suck it up and act like adults about every single matter concerning this. Do not second guess. Do not wonder out loud on twitter.

Be respectful. Be rational. And overall, rally like that blogging community I KNOW you can be when one of us needs it most.

There will be time for all of us to fight about gun control and politics – you can COUNT on that. I’m not asking you keep things without opinion. I’m asking you to rally. And to rally hard. 

Hold those you love close this holiday season. Help in any way you can.

For our @VDog. For her family. And, most of all, for Noah.

 *In the spirit of this post, comments are off. 

Happy Holidays

*the come hither look scares the crap out of me and my son will grow up to be a comedian.


From my family to yours

The next order of business

That Damn Cat is Evil

Prime example of BAD TECH:

There is a FurReal Friends white cat sitting outside in the car right now.

It’s not allowed in.

It’s not only creeping me out, but it won’t stop meowing and purring.

On Christmas morning my darling daughter will have a fake kitty to play with, that mimics a real life kitty…without the litter box, and I couldn’t be more creeped out by it.

Sure we’ve had the RoboPanda and the TriBot…but…this kitty…it’s just…I don’t know…TOO life like?

I waved my hand in front of it’s face, while it was still in the box, and it blinked and acknowledged me.

I can’t get Chucky out of my head.


When it comes down to it

..I’m totally traditional. Shhhhhhhhhhhh don’t tell anyone, it will totally ruin my street cred.

I’m sitting here after having feasted this Christmas, wine in hand, reflecting on what a total, traditional, happy homemaker I am.

Every year we have kielbasa from Detroit because that is just what you do on Christmas Eve.

I actually buy “Santa” paper just like my mother did before me, so all the Santa gifts have their own distinct Santa face.

We open stockings first, until adults are alive and the coffee is at least dripping.

After the chaos, left-over kielbasa and eggs for breakfast.

(mentally noting it’s always about the food)

None of these may seems like really big deals, but to me…they are HUGE. I can’t decide if that is WEIRD or completely against my nature. I mean, I’m the one who left my hometown. I was always weird. I was always the one who never fit in and always wanted OUT.

Yet I’m the one who gave both my children family names and continue traditions that have been practiced since I was born.

I don’t get it.

I mean, I spend a lot of time fighting against conforming. Well, I do and I don’t. It’s just that I was lucky. I had a warm and fuzzy and happy childhood and I want my kids to have the same.

I was never an angsty non-conformist. I was a happy non-conformist. I always did things differently and I was lucky to have parents that told me “that’s great!” In fact, I distinctly remember trying to come up with one single word to describe me for my Confirmation in 8th grade and my Dad telling me to write “Independent.”

So when I find myself screaming and yelling about politics or parenting or anything in between, it feels very natural. When I find myself DEMANDING we ship kielbasa from Detroit to Los Angeles, regardless of cost, I scratch my head a bit.

Of course this is just one part of my life. There are many other parts that would probably melt your brain they are so very NON traditional. Yet the constants…the things that never change, are as traditional as they come.

I’m embracing it, that’s for sure. As I get older I’m taking more and more pleasure in sharing those warm fuzzies with my own children. With settling into this life with a sprinkle of my mother and her mother and my grandmother’s ways in my kitchen and my home and my mind.

Maybe that’s how we all do it…take the good and rant against the bad. This Christmas I’m thankful the good I keep is in my home and in my heart. The bad I scream and yell and fight about almost always is on tv or in a newspaper or somewhere ‘else’ out there in the big wide world.

“Independent” still fits though, even if I’m currently freezing kielbasa and doing dishes.

2 Days Until Christmas, in case you didn’t know

2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas! 2 days until Christmas!!!!!

I’ve heard that about 50 times and we just woke up about 4 minutes ago.

I love having children in the throws of the “Santa ages” of childhood but HolyMaryMotherofGAWD I’m pretty sure my son’s head is going to EXPLODE before he’ll ever wake up Tuesday morning.

He’s obsessed. He’s also truly, and honestly, to his toes worried Santa won’t bring him something because he’s been bad.Yeah, cue the “awwwwwwwwww.” I mean, I only torture him like any other good American parent would. “Santa is watching, don’t you dare hit your sister.” “Santa heard that lie Count Waffles and I’m pretty sure you’re on the naughty list.”

With panic in his eyes before bed last night he actually asked me if *I* thought he had been good enough to warrant a gift from St. Nick. “Oh honey, I’m sure you’re just fine…don’t worry,” I said immediately regretting it if only for the pure leverage it’s given me these past few weeks.

Terrible, I know. He’s 4.5 though, he’s in trouble all the damn time.

When I was a kid we had the house on Christmas morning where everyone was up before dawn and my parents made us lay there awake and wait for the sun. It was unlike any torture known to man. I would call it worse than waterboaring.

My brother and I would be in our beds, flat on our backs, with eyes as wide as saucers and stare at the ceiling until my Mom or Dad would say, “Ok.” We’d throw our blankets off and race downstairs as fast as our tiny feet could go.

It’s 2 days before Christmas and my son is awake a good 2 hours earlier than usual bouncing off the walls. It’s like he’s had 6 cups of coffee. Like he’s got Santa fever and the only cure is more jingle bells.

He’s an addict and I don’t think any of us are sleeping until he crashes in a pile of unwrapped presents in about 48 hours.

I think the excitement and joy of this age is one thing, the sheer insanity and uberhyper activity was something entirely lost on my parent brain until about a week ago when he began to twitch.

I guess many of you may lecture me about hyping this holiday and it being all about toys and gifts and gimme gimme gimme. In all fairness, you’re an idiot. I haven’t done anything more or less than most parents do this time of year and we’ve had plenty of talks about giving and kindness and gifts not being important.

That being said he’s just shy of 5-years old and the boy believes. He believes some magic, white-bearded guy is bringing him toys. The holy grail of childhood. For one day a year he gets to have a candy and cookie laced toy-fest and the only thing stopping him is his ability to whack his sister on the head with a balloon and piss off Mom with his lazy cleaning skills. He believes, and it’s freaking magic people. It’s that warm, fuzzy magic that only comes when you’re a kid and Santa is coming. The entirely pure and innocent joy.

As a parent I’ve actually thought long and hard about this whole thing (why yes, as a matter of fact, I do think long and hard about my parenting decisions) and I’m totally fine with it. There are only so many years of Santa belief and I don’t really give a damn if that makes you think I’m spoiling my child or teaching him the wrong lesson. There are only so many years of pure magic on Christmas morning when you wake to find gifts have just appeared under your tree. There are only so many years when you can’t sleep from excitement and wait and wonder with hope and some panic if that one special thing is waiting there for you on that one special morning.

It will all be gone faster than a blink and he and I are going to enjoy every insomniac moment of it, dammit.

In fact, I’m letting him have Christmas cookies for breakfast while we wrap gifts. Then, with any luck, he’ll crash from the sugar high and I can get some sleep.

Holiday Card Envy Part III

It’s not like I care…but…my daughter has an entirely chapped face and my son has a big bump and scratch under his eye.

Yes, ladies and gentlemen, it’s Holiday Card Time! Remember last year? And the year before?

This year is no exception. I’m not sure how to stop the licking of the lips so much that it appears the 2-year old suction cupped a red plate around her face, or how to wrap the boy in foam so he doesn’t maim himself.

Doesn’t matter. Cards are ordered and once again they are far from perfect. Our lives are far from perfect. Our home is far from perfect. They are kids. Kids are messy. Hell, I am messy. Our lives are messy. Messier than usual, and that’s saying something.

Now I need to figure out how to sign them. The Royal Family? Count, Princess, Queen, Kaiser, & um…hmmmm. Maybe I’ll just say “Happy Holidays, these are the messy kids we created” and leave it at that. I mean, I can only take up so many lines on the one page card. I don’t think “Happy Holidays (non denominational seems safe) these are the kids as they are this year. Sorry, but I wasn’t there to comb their hair when this was taken, because I was off working, but I think their Dad did a good job…oh, and speaking of him…yeah, lots going on there…oh and me? Yeah, lots going on their too. But as you can see our kids are happy and healthy and totally messy so enjoy the photo and Happy Holidays.”