The Most Magical Thing Happened to ME

It wasn’t a dream.

I woke up on Mother’s Day inside of this castle:

Goodbye

I am not kidding. Read the full story over at As Dreamers Do.

IT.REALLY.HAPPENED.

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…in continuing my teary tributes, I must now brag about my daughter, the child who has had her own hashtag since I can remember…

#AllHailHala is no joke.

The hashtag may have started out that way, due to her demanding nature and poise that can be described as nothing short as that of a blue blood…but it and she have become so much more over this decade of her existence.

A decade. An entire decade of our ‘lil Princess Peanut Punk as…well…she knows the rest. And she has lived up to every inch of her name, with several surprises thrown in for good measure.

She would rather watch cat videos than princess videos. In fact, she has never been into that whole princess thing. Animals? Sure. Princesses? Not so much. Personally I think it has something to do with the fluffy dresses. Because I wanted nothing more than a daughter who would wear fluffy, too much tutu type dresses  so, sensing this, she’s in nothing but leggings and t-shirts day in and day out.

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And nothing can ever, ever be pink. Well, that’s not exactly true. She’ll wear pink when matched with black. Throw in some skulls and you’ve got a true #AllHailHala outfit.

That’s the great thing about her…she is her own woman. She knows it would please me greatly to see her try out ballet (again) or ask to be Cinderella for Halloween, but she also knows I’m even more proud when she asks to dye her hair rainbow and when asked what she wants to wear to school in the morning waves her hand as if it’s quite possibly the stupidest question EVER asked and dismisses me with an ‘I don’t care…clothes…’

Peer pressure means nothing to her. School is for socializing with her friends but also for making sure she learns everything required of her so she can move on and see the world. Experience the world. Rule the world.

Sometimes I feel as if we’re all just standing in the way of her war path to greatness and if I would just step aside an inch she’d graduate six years early and immediately begin making a difference in any field she chooses.

Unlike her brother, who knows his specific passion in science, #AllHailHala deems the entire world worthy of her passion and she’ll conquer every business, subject, person, and animal world with strength and confidence.

Currently I am her only fear, and not in a discipline sort of way, but because we have plans and she worries about my health. Like her brother, her compassion and her heart run circles around the universe and I watch her wrestle with her bravery and her deep worry.

When she was just eight-years old she became mesmerized with Morocco at Disney’s EPCOT. She asked if we could visit the real Morocco someday. Of course I said yes. Somewhere between high school graduation and college we’d go- but she needed to learn of the culture. How women are treated. We discussed human rights.

That trip remains planned, but I’m fairly certain she will lead an army to free the oppressed while she shops for a beaded pair of slippers along the way. That’s just her. Fierce. Bold. Yet still glued to my side with snuggles and love after a hospital stay in which she cried on Skype for me to come home.

A decade of her on this earth and she has already committed herself to helping animals (she finds many people just plain stupid and not worth her time) and comforting her brother and any others who may need extra attention, regardless if she is the one worrying.

Only the chosen see the child still inside. The one who will pretend she’s a cat and crawl with the dog and cat throughout the house. I’m thankful she still ‘plays’ as many of her classmates are already talking boyfriends and boy bands.

Not our girl. Music is a passion but her father took her to see Lorde, not One Direction, this past summer. She belts out anything but top 40 in the shower and just doesn’t care what the other girls are doing. She truly doesn’t. Like her brother she has no problem telling her peers if they are being mean, rude, or exclusionary and catches herself should she press her own personality too far and inadvertently leave out anyone.

I feel as though she shouldn’t be so self-aware at 10 but am proud just the same. I know she has so much more to discover about herself and I’m awaiting the tween years to hit, but I have confidence I will underestimate her, as I tend to do, and she will blow me away with her insight and maturity.

I’d never admit this to her outloud, and will deny this sentence when she reads it, but she always seems two steps ahead of me. Always ready with the right answer and with nothing for me to be angry over, she’s what I want to be when I grow up and how I want to act when confronted with a differing view. She’s teaching the teacher how to remain calm yet still defeat the enemy. All while not seeming to give a damn.

It’s a minor inconvenience to her to change the world. She’ll do it with a wave of her hand and a few orders.

There is simply no one else like her on this earth and she’s made sure of it-carving out her own path despite her father and I pushing for this or that.

If this continues, everyone who doesn’t know #AllHailHala will- and they will witness her drive, strength, and humanity.  Her mark on this world will not be a small one, that I can promise.

Happy Birthday baby girl.

 

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It’s that time of year again…where I get all teary eyed and brag about my children endlessly. That’s what you get when both your kids are born in the same month…

 

I’ve always thought he was a wise old soul. Now I’m certain.

My first born turned 12 this past week and I’m still working through the emotions wrapped around just another number yet anything but another year-in-the-life.

12. 12. Never mind where years 1,2, 3, 4-11 went, I want to know how he managed to become, very honestly, one of the most compassionate and amazing humans to walk the earth.

I know, I sound like every Mom. Convinced entirely their child is the greatest and better at everything than any other child ever was.

Except, I know better.

I know my son struggles with many things, not the least of which is a mother with a chronic illness. He struggles with his own illness as well, Obsessive Compulsive Disorder. Though mild it’s enough where people who don’t spend much time with our family notice and some even dare to poke fun. Something I notice and get my mom claws out immediately over, but something my son brushes off and even questions, as they clearly do not understand his higher intelligence and he feels genuinely sorry for them. No really, this is how these conversations go. He has sympathy that this child or adult hasn’t met anyone like him and doesn’t know enough about the world to have even learned there are people who are different. He wants to educate them and gets simultaneously upset at their upbringing and the world and our culture because some people can be so sheltered, mean, or uneducated.

You would think a tween headed into the teen years would want to just blend in, especially one already dealing with OCD and yes, a higher intelligence than his peers. But, no…not our child.

His hair is currently longer than my own with a bright red streak on one side. When he is mistaken for a girl he asks the person if they have ‘gender’ issues. He’s not being rude, or trying to start anything…he truly wants to know if they have gender issues and why they can’t fathom a male with long hair. He sees the world very clearly and gender does not come into play when it comes to hair length.

This is all entirely logical to him and not even slightly malicious. Far from it. He wants to understand. He wants you to understand and he wants to understand you.

I feel as though this past year he has matured so very much I can’t help but wonder in awe at his accomplishments and just the way he carries himself.

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He wants to go to M.I.T.

While he understands science and physics and has the periodic table of elements in a frame over his bed, he spent much of his school days struggling with math. But he understood completely if he wanted to get into M.I.T. one day, he would need to be good at math.

He wants to do large equations like Sheldon on the Big Bang Theory…complete with a big ‘ol white board for his bedroom.

So, in his very own way, he spent much of his first year of middle school melting down and incredibly emotional over what he thought was his inability to grasp whatever math lesson was being taught. And in his very own way once again he decided it just wouldn’t do anymore and flipped that switch off, turning on a new one, bringing home extra credit work and practice in order to understand the math he swore he didn’t understand.

Just as soon as his emotions calmed, the math would be finished in a second flat. He would remark how easy it was and move on to his video game.

I’m not suggesting it’s remarkable my child fulfilled his math duties as a 6th grader, but what I am suggesting is that at the tender age of 11 he realized he had a goal that was another lifetime away and began working towards it full force and this is the kicker…without prodding from his father, without pushing from me.

That is the old soul in him. The one who can see beyond the immediate gratification of a reward for an ‘A’ or the back patting from Mom and Dad.

He’s going to be a scientist. He’s going to retrieve the rovers from Mars. He’s going to cure Lupus. He’s going to do everything he says he will do, because I’ve watched him simply change his mind to make it so.

And while all of those goals are great, nothing makes me more proud than when he is simply Jack.

The kid who still saves half a cupcake if there is a birthday in class because he knows his sister will love the frosting.

The kid who used his own birthday money to buy another fedora for a boy at his birthday party after some kids at school threw the original, used as the goodie bag to hold candy for his guests, over a wall on a walk during P.E. Without me asking. Without me offering. Without it even being an idea in my mind at the time…just said, “Mom, I need to buy him another one…those kids were jerks for doing that and I told them so.”

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Entirely unafraid to stand up to the “athletic” kids as he calls them and entirely determined the world will be fair on his watch.

Another thing I adore about him…his ability to feel so deeply for others to the point of tears while watching the news. No, he doesn’t want me to turn it off. He wants to learn more. Even if it upsets him.

At first I thought maybe he just needed to try and understand why evil exists. He wanted to keep watching so he could have some explanation for his always moving mind.

But then I realized that was only part of why he wanted to keep watching, despite feeling such empathy he was in physical pain and emotional distress. He wanted to keep watching because he needs to know everything about the problem in order to fix the problem.

His brain is constantly coming up with new ideas on how to make planes safer, how to end racism, how to feed the hungry and house the homeless. He is tremendously upset by injustice and disgusted by bigotry.

It could be 1 in the afternoon and we’ve just finished watching a Disney movie and he will suddenly begin a monologue on how he’s almost figured out how to get the cells in my immune system to behave normally but he needs to know more about immunoglobulin so he might look that up tonight in bed, but not until after he finishes a documentary he was watching on string theory and that one video he wants to see that can show him how to level up in the game he’s playing with a glitch this guy found.

At least there was some time in there to be a typical boy. I think.

Yes, I worry that he worries too much. A 12-year old should be climbing trees and riding his bike and squeaking in that prepubescent way, not wondering how he can stop climate change and cure cancer.

But never fear, he is also every inch of a 12-year old boy that you would expect combined with a wise old man. A wise soul filled with so much love it hurts us both at times. He’s even shown he has the heart of a writer and poet…something I wasn’t expecting with his usual scientific mind.

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I’m beyond proud of the man he is becoming and wish I could stop time to let him enjoy his childhood a bit longer. But something tells me that just is not how he wants things to go. He wants to accomplish so many thing and understands he needs to grow and age in order to do these things.

Just that he understands this, astonishes me. But I don’t know why I’m surprised, he’s been showing me this part of himself his entire life. And it’s a life I’m damn proud of.

Happy Birthday Jackson.

 

The (Digital) Kids Are Alright

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I really think you need to suck it up and realize what was normal for US as kids is not normal for OUR kids.

Sure, get fresh air, get exercise, go play outside…but let’s face it, when it comes to ‘play a game’ or ‘read a book’ all of that is now done digitally.

Yup, that means their iPads or their computers or their phones…ONLINE.

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I was recently reading a few posts about bloggers limiting screen time, not even allowing their kids any screen time and even some who refuse to allow their children to play any games at all or use any ‘smart’ devices.

Not to start another Mommy war but… are you TRYING to handicap your child? You do realize the world is a very different place than the one we grew up in and certainly WORLDS away from the one our parents grew up in- meaning just about everything is digital these days.

My kids research their homework using their iPads. My kids play with the their friends in virtual worlds like Animal Jam and Club Penguin. My son meets up with his buddies in Destiny and Borderlands. That’s social and educational.

Their projects in school are in minecraft and contain websites with links to their homemade videos. They link to their sources instead of write them down. They dictate their essays and email their teachers.

They know more about cyberbullying than kickball and can rattle off more youtube video makers than actors in Hollywood.

I’m entirely ok with all of this. So is their Dad.

Go on, hate away. But my kids are learning to do all of the things we learned to do, just throw in code and type at a much younger age. Yes, they pilot drones and use google maps to make sure our roof isn’t hiding any wayward frisbees…and yes, they stare at a screen as much as they like. It doesn’t mean they aren’t learning and it doesn’t mean they don’t get any exercise.

It just means times have changed and the book they are reading is stored on their iPad and the homework they are doing requires they watch a video embedded on the Smithsonian website.

Then to relax they put on their headphones and mics and have a virtual playdate with their buddies across town I can’t drive them to anyway because dinner is nearly ready.

So do your kids a favor…lay off the strict rules and timers when it comes to their gaming consoles and phones and tablets and computers. Think of it as your parents forcing you to shut off your radio or your walkman or putting away your TeenBeat or your D&D game. Actually, it’s more like them making you come in from outside instead of creating that imaginary game with the neighborhood kids…because that’s exactly what our kids are doing with their friends, it’s just their imaginary worlds are way more colorful and their costumes are super cool.

#WomensLives

In between Madonna taming dancing bulls in her Matador outfit and Kanye nearly interrupting Beck’s acceptance speech you may have noticed someone even more controversial on the Grammy broadcast: President Barack Obama.

Speaking to the audience via video, President Obama challenged the artists and all of us to STOP violence against women.

Not your usual performance, however coupled with a strong statement by a domestic violence survivor and a haunting song by Katy Perry, the President’s message was clear…we ALL must be part of the solution.

Yet this is just one fight on a multifaceted front. As demonstrated by a round-up of amazing posts, there is a war going on and women are on the front lines.

That is why you’ll be hearing from me, along with many others, as we partner with BlogHer, BlogHer’s parent company SheKnows Media and Public Radio International to make sure we highlight what is going on with women and women in the news. Why? I honestly think Brown Girl From Boston said it best:

“I couldn’t refuse this partnership because I, too, am a woman like Sojourner Truth stated during a speech about the trials and tribulations of African-Americans during slavery and post slavery but allowing her voice to flow and be strong enough to stated that she is a woman despite her skin complexion and life journey.

During this period of the #womenslives campaign, I will speak my truth, spread awareness in a loving and authentic manner. I am going to share other women’s voices and stories along with statistics that will remind of the role we need to play as women being equal in the world. I hope you all will enjoy the stories and campaign because we are going to bring greatness in an authentic and loving manner.”

So with that, I give you #WomensLives … because THIS is why I got into blogging, to share your stories, to share my stories and to change the world.

The Fairy Godmother and My Glass Slipper?

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This has been siting on my desk, or shelf, or wherever in our bedroom for about three or four years now. Maybe two. I’ve lost track. Let’s just say it’s been around long enough to gather a ton of dust.

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It’s one of my favorite Disney quotes and one of my most hated. I’m a complicated woman like that. You know, the atheist that is currently wearing an Ave Maria medal blessed by Pope Francis. That’s just how I roll when it comes to faith and miracles.

The entire quote/scene might help you a bit more:

“…Cinderella: The ball? Oh, but I’m not…

Fairy Godmother: Of course you are. But we’ll have to hurry, because even miracles take a little time.

Cinderella: Miracles?

Fairy Godmother: Watch. What in the world did I do with that magic wand? I was sure I…

Cinderella: Magic wand?

Fairy Godmother: That’s strange I always…

Cinderella: Why then, you must be… Fairy Godmother: Your Fairy Godmother?

Fairy Godmother: Of course. Where is that wand? I forgot…”

This entire scene comes as a crisis of faith for our poor Cinderella. Now mind you, Cinderella is not one of my favorite princesses. No offense. It was just never the story that stirred me much. I didn’t have sisters, let alone step-sisters to relate. My parents didn’t make me clean much more than my room.

Admittedly I would pretend my oatmeal was gruel and animals talked to me. But that was a skill a child could apply to any princess situation. Or little orphan Annie or wicked Queen has me locked up or Jabba the Hut has me locked up or … you get the idea.

But that scene, the magical one where Cinderella is transformed, THAT part was always fun. And it comes just after our scatterbrained Fairy Godmother finds that wand.

During one weak moment, ok a few hundred weak moments, when feeling like my life has been robbed from me, the snow globe and quote gave me a reminder that maybe, just maybe, a miracle would happen to me.

I don’t, particularly, deserve one in the grand scheme of things. Or need it.

Technically I’m not suffering from a terminal illness. So many others are. They need miracles.

I have a supportive family, even if they have suffered more than I have through this with their worry and fears.

I have a roof over my head, food in my stomach, and despite three hospital stays in the past however many weeks, they have been for, mostly, the luxury of making me comfortable. So while I may beg and plead with whatever entity I’m feeling aligned with that day to take away this illness, I realize how lucky I am. I do.

But all of that hasn’t stopped me from wishing. I still wished. I STILL wish.

And haven’t stopped since walking out of that stupid doctor’s office over four years ago, with my kids and my father, with the word ‘Lupus’ slipping from my tongue and being texted to my husband. I watched my Dad turn white and learned my husband did the same, as the only thing they knew of this ‘Lupus’ at that point, was that it would kill me.

I was permanently put on steroids, oral and a very high dose on that day and haven’t been off of them since. In fact you can now add Cushing’s Disease to my very long list of disorders and ailments thanks to long term steroid use.

But yesterday, I got in the car after seeing the neurologist I met during my most recent hospital stay, with a new medication in my hand and hope. Hope for the first time in a really long time.

We have this goofy thing in my family. If Bob Seger’s song ‘Old Time Rock and Roll‘ comes on…well, you have no choice but to dance. It’s the family’s dance. It came from one of those weekends when we were bored and little, stuck at one of my Dad’s hockey tournaments somewhere in Canada and they would always have these parties afterwards.

Somewhere, upstairs in every hockey rink, there was a room where they sold beer, hot chocolate, hot dogs, and cleared away the tables after the games were over to play some music and let everyone dance.

My brother would always run away screaming if it came on, knowing my Mom was coming for him to drag him out onto the dance floor. I would go willingly, knowing after a few beers my Dad would twirl me around and the four of us would laugh and dance and sing at the top of our lungs.

It was a rule. You had to do it. So if I brought a friend, or my brother did, or if a cousin tagged along…beware the Kotecki rule!

As I started the car, new medication slip in my hand…”…that kind of music just soothes my soul. I reminisce about the days of old…with that old time rock and roll…”

And I danced and hopped around in the car. I didn’t change the station, or call my husband, or text my parents. I sat in a parking lot in Encino, California and danced and sang like a lunatic until the next song came on. I actually worked up a sweat.

Part of these auto-immune disorders for me is vasculitis. This medication is going to calm my blood vessels. My rheumatologist thinks it’s the missing piece to the puzzle and the neurologist told me the journey ends here. She’s sure it will work to change my quality of life. It should keep the TIAs at bay, while simultaneously bringing me some relief all over my body as my blood vessels swell and contract causing me widespread pain.

By this time next year, I may be on this and my Rituxan infusion, which comes every four months. The doctors are working together and believe should all go well, this is a real goal-Attainable and not false hope.

We’re also looking at gastric bypass in Cushing’s patients to speed up the process of my potato like frame. Losing weight will only help reach the goal faster, but it has been all but impossible for me while I’m still on oral steroids daily and occasionally have to get them via IV or shot. My body refuses to let go of the fat while on a steroid.

Understand I wanted to tell everyone the minute I left the office, but also needed a moment to myself. This is the first honest glimmer of hope I have had to find my way back to my LIFE in a very long time. I’m still not sure it’s real. I’m afraid to celebrate but want to, desperately. I’m afraid to tell you out loud, fearing I will be told by someone I’m crazy to think this will make that big of a difference and or they too were told by their doctor this might help and it didn’t or … well, you get the idea.

I don’t want to excite the kids that I may get to my goal of walking a Disney park and not needing a scooter.

I don’t want to excite my husband and prime caretaker that he may have a wife again, not a shell of a woman who looks somewhat like his wife but is really just an ill person in need of constant care.

I don’t want to excite my parents & brother, who have supported me through this ordeal and the rest of our family, including inlaws, all having seen the life-changing affects in one way or another. Helping in one way or another for so very many years now.

I just want to keep dancing in the car, having received what I  believe to be my miracle. So much so I sprinkled glitter on it last night.

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It may not be a glass slipper, but it sure feels like one.

So yeah, that

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Three hospital stays since returning from Hawaii. Not entirely how I envisioned the past 6 weeks.

I’m coping. I’m trying hard not to fall into that dark place and I’m taking solace in words from the neurologist during my last stay…things will change, and this time, next year, I could be a very different woman.

This is chronic illness.

How are the kids and husband coping? Sigh. Can you hear the wave of guilt hitting me as I type that sentence?

I thought, instead of dwell, I would just say that I’m ok. We’re ok.

I will know more Monday and I will know if that promise…that hope…that doctor really can change this life of mine.

In the meantime, go check out our December vacation where, for at least a short while, I felt like I was whole.

Well, almost.

Getting there.

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40

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I’ve been wanting to write and write and write and write and write…

I turned 40. 

I don’t feel much different. Or older. Minus my body continuing its march to disintegration. But mentally 40 feels much better than 20. Even 30. I actually like getting older.

We went to Hawai’i as planned and it was amazing, as planned. And, as if as planned, I landed in the hospital upon our return.

I have a really bad habit of going and doing something awesome and then having to spend a few days in the hospital because of said awesomeness. This time I can honestly blame a combination of the shingles and travel. Had it just been one or the other I would have been fine. But… no. That would be too easy.

But back to my awesome birthday in Hawai’i. I fell in love with shaved ice. I finally got myself a Disney Dole Whip (they have them at Aulani… no line… swear to God) And I loved nothing more than sitting on the balcony in the morning and watching the ocean waves. Admittedly I didn’t want to leave.

 

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I even asked a friend to just bring the dog. I told the kids we could make shell necklaces and sell them to tourists. They usually look at me like I have 4 heads so…no worries. I even got into a rather cold ocean at 9am and swam with some dolphin pods and saw some sea turtles. I couldn’t believe how many were just zooming by right under us. To watch the kids go from afraid and tentative to nearly screaming through their snorkels was pretty fun too.

In fact, the entire trip I think I delighted in just about everything the kids enjoyed. Simply because they were enjoying it.

I think that is what 40 is all about. Watching those you love enjoy the wonder of the world around them. Having them burst into the room talking so fast about paddle boarding with Dad you can’t even keep up or hearing about the fish swimming around their feet and the crabs that were snapping their claws just inches from their faces and oh by the way here’s another shaved ice.

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Yeah. 40 is much like today. Christmas. Where I love seeing everyone’s face as they open their presents. I love seeing the kids peek around the corner of the landing and then around to the stairs…and watching their eyes grow wider and wider as they realize and recognize familiar sights under the tree.

40 also means the three days in the hospital were painful and upsetting. 40 also means I recovered in enough time to see the kids perform in their school winter program, attend their end of school parties, and then catch a stomach bug that knocked me out for 24 hours.

40 is making it harder to fight. Its not that I don’t want to fight. My age is just making it harder. The recover is a bit slower. The punches I’m throwing back aren’t landing as often. I’m still landing them though, don’t worry. In fact, I’m doing well but no one believes me. I guess it’s hard to believe a woman in the hospital or fighting a stomach bug.

The truth of the matter is despite its hardships, 40 is my favorite so far. I know who I am. I know what I enjoy. I know what I need to do.

If there is one gift I wish I could give everyone this Christmas, it would be the gift of knowing who you are, what you enjoy and what you need to do. If you are younger than 40 I hope you don’t have to wait this long to figure it out and if you are over 40 I hope you’re looking at me laughing because you know how much better it gets from here on out.

Now if you will excuse me, I have a new plan to concoct… something about shells, necklaces…and shaved ice. Lots and lots of shaved ice.