Be Mine
I Was Her
It’s been a haunting memory for life: watching my grandmother carefully and painstakingly try to hook her bra with swollen, nearly purple fingers. I can hear her sigh as she misses the hook yet again, I can see her turn the bra from back to front and try to look directly at what she was doing while singing my cousin and I a song or giving us instruction on where to find candy she had hidden in her top dresser drawer.
She looked crippled from wrist to fingertip. That is exactly how I remember her- swollen, claw like hands that just looked stretched beyond comprehension. Skin-tight and taught, the joints bent and curved.
She always took great care to talk to me while fighting with her hooks and buttons. She would look me in the eye and tell me a story, as if nothing were bothering her. Yet even then, when I couldn’t have been more than nine or ten, I knew she was hurting.
I look back now and realize the similarities. Her very round, rosy cheeks. The fingers she could not straighten. The endless hours of sitting next to her while she rested. My grandfather’s devotion to her, getting her whatever she wanted and needed despite years upon years of trials and tribulations, the reality of marriage.
A similarity in which I would normally find comfort sends chills down my spine. Similarities I hope will end soon. While I admire my grandmother, and even named my daughter after her…I need our stories to take different paths.
I found myself last night cooking dinner and talking to my own children. Trying not to let them see me wince as I cut chicken and breaded and baked. It might as well have been a hook, or a button. It might as well have been my grandmother and I in that kitchen. My round, rosy cheeks…my swollen, pained fingers, curled into a ‘c.’
I was her.
And when the kids left the room to play elsewhere, tears rolled freely down my face while I struggled to finish.
Grandma, I love you. I just can’t be like you. I will win where your doctor’s failed. And I will continue, where you left off. I hate that I now understand the pain and I hate how hard you must have tried to not show it to me. But I will take this genetic burden and lift it for us both, so that my granddaughter is immune and ignorant to what we’ve endured. This will end with me and we’ll be the only two who know. Her partner will not fret with the doctor over which experimental medication to try next. Her children won’t see her cringe as she tries to get out of bed. And she will not carry with her the vivid memories of simple tasks, like her grandmother trying to hook a bra. I wish you were here so that I may ask you your tricks in getting through the day. I wish you were here so that we may commiserate together over ailments and pain. But even more than that, I wish you were here so that I could help you hook that stupid hook, and you help me hook mine.
I Love Mornings
My son and I have started this new routine. We wake up before anyone else, I put on a pot of coffee, pour him some cereal, and we turn on the Today Show and local news.
We talk about shootings. We talk about the weather. We talk about world wars and celebrities in rehab. We talk about the Dow and the President. We talk about what on earth that news anchor is wearing. We just talk.
He’s seven-years old and he knows more about the ‘bad guys in black’ beating Egyptian protestors than most grown Americans.
Of course I worry he’s seeing ‘too’ much. That maybe I’m exposing him to the reality of the world via the news and turning his otherwise innocent brain cold and cynical. But I don’t think so. He’s fascinated. Much like I am when I watch. Yes, some of it can be scary…but it’s life. It’s the real world. It’s what he will be dealing with if he likes it or not.
There was a time I would change the channel if the news was on and the kids were around. But now that my son and I can talk about things, at an age appropriate level and with him truly understanding…it’s different.
I also realize that I am a news junky. And I really need to weigh what *I* find overboard and what the rest of the world might find overboard. But when I am sitting on the couch, coffee in hand, sun rising over the mountains out our front window… there is no ‘overboard’… just honest discussion between two people trying to understand the world.
I find myself saying ‘I don’t know’ a lot and I find myself saying things like ‘yes, some people really are that mean’ more than I care to. But I also find myself laughing, explaining why we would celebrate someone’s 108th birthday with a photo on the tv, and making sure I pass along news to his Dad that traffic will be bad due to an over turned tanker on his route. News I MUST pass along because my son is generally concerned about his father’s punctuality. Or just really excited he gets to inform him of something he learned.
Maybe it’s a bit more simple than all this though. Maybe I’m just over- the-moon to be spending time watching and talking about the news with my son. I have a son, and he just might love news as much as his journalist Mom. Maybe. Maybe he’s seven and this too shall pass.
Either way…I love mornings.
The State of My Union
As I am sure you have noticed, I’ve stayed away from blogging my usual political rhetoric as I battle Lupus. I’ve done this for a few reasons, not the least of which is I get very passionate about politics and it gets me worked up. It’s hard to rest and recover when you are screaming at your television screen.
But I’ve realize something as I’ve sat on the sidelines, that I have known all along…
…politics is personal, and there is no escaping it.
Tonight the President will give his State of the Union address, and I am jumping back into my punditry and commentary. Not because I want my Lupus to flare worse, and not because I feel compelled to give you my take on whatever tonight’s hot button issue will become…but because I have realized nearly everything hitting the news cycle directly affects my life.
Health care reform. Violent political rhetoric. These are issues literally banging down my front door. Jobs, benefits, and the President’s new priority: education. These are issues I am dealing with every single day as an American citizen, mother, patient, blogger, and victim.
People can talk all they want about it just being ‘DC’ or it just being all hot air and men in suits…but when those suits decide the fate of things like ‘pre-existing conditions,’ ‘mortgage overhaul,’ charter school status, and motivate mentally disturbed people to shoot a Congresswoman and threaten my family…well, the term ‘just politics’ no longer seems to apply.
It’s personal. It always has been. And it always will be.
You can follow my State of the Union commentary tonight on BlogHer Chatter and Twitter.
The Apple Doesn’t Fall Far From the… oh nevermind
You have like 40 new games…you don’t need a new game.
Mooooooooom, but the App store says there is a new snail game, I want the new snail game.
Wait…the App store? How do you even know where the App store is? Did the App store TELL you it had a new game?
I always look for new games Mom, I feed my puffle, feed my fish, feed my reef animals, and then I see if there are new games at the App store.
Sigh.
Oh Apple, what have you done?
And Since We’ve No Place To Go…
I’ve watched her wish for it while staring dreamily out her bedroom window.
But Mom, why won’t it ever snow here? Why? It’s winter. Winter means snow.
I’ve heard her bemoan sunny Southern California for its palm trees and sunshine, begging for just a tiny bit of white powder.
I’ve even caught her wishing on the first evening star.
Last night, she and her brother threw snowballs at each other in their own yard.
Tonight I just might have her wish for a few other things.
2011
Today my husband taught me how to live again.
Having spent 2010 in and out of the hospital has left me in a constant state of fear. Fear the kids are suffering. Fear he is suffering. Fear of being a burden. Fear of dying. Fear of living as a sick person. Fear of not being able to work. Fear of not being able to … fill-in-the-blank…
So, as he does, our patriarch made an example of himself and jumped out of an airplane.
If you know him, and know us, this works perfectly. Despite my usual bravado, I rely on my best friend and partner in life to keep me grounded. He knew this terrified me, despite the two of us having jumped together before. He knew I was terrified something would go wrong. And why wouldn’t it? EVERYTHING has gone wrong in 2010. Tempting fate with a skydive seemed like asking for trouble.
But he stood firm. And I stood tall. Gifting him the jump for his birthday to show I would support him, even if I was against it. That I would make sure he got his jump, even if it was the last thing I wanted him to do. After all, we do things for those we love that we might not do otherwise. We want to make them happy. We want to give them everything their heart desires. We want them to have it all- regardless of our own feelings.
I have proof of that laying next to me right now. My sweet puppy that came into our lives this year during the worst of times. The dog he swore I’d never have. The dog I so desperately wanted but knew I’d never get, because he really did not want one. The dog that sits here now, snuggled against my side, wet nose on my knee.
I’d do anything to make this man happy. He’d do anything to make me happy.
So off to the airport we went. And out of the plane he fell. On the ground I fretted. And fussed. And fidgeted.
And then…nothing went wrong.
His words?
We Win.
2010-
You took my organs. You took my confidence. You took my livlihood. You took my sanity. You took my normalcy. You nearly took my life.
It’s over. You are done.
I’m still here. I’m taking everything back…keep the organs. Think of them as my parting gift of a bloodied year that tested us in every way imaginable. But it’s ok…
We Win.
I am going to live again.
Thank you, Aaron, for reminding me how to live. How to live with meaning, with fun, and without fear.
On Mothers and Sons
My son gave me a ring for Christmas. A beautiful, school-gift-shop bought, pink-stoned, heart-shaped ring. Being the nosey mother I am I poked and prodded him to find out why he chose this ring, and why a ring and not, say, a coffee mug or frame or any one of the other gifts they sell at these types of affairs.
The pink stone and heart were easily explained. This was the only ring with pink – and he knows I love pink. As for the heart, well he said, ‘Mom, I love you, geez.’
Makes perfect sense.
Now…why a ring?
This is where things got more complicated.
I wanted to give you something like Dad gives you that you never take off.
Because of my wedding rings, you mean?
I wanted to give you ones like Dad does, so you wear it…always.
There are lots of things I wear all the time honey.
Yes, but only the ones that you love the best you leave on. You never take off the diamonds. So I had to give you one just as good as Daddy’s.
Sweetie I would love to wear anything you give me all the time, rings or hats or anything!
But if you got a ring, from me a boy, you have to wear it forever.
I hugged him, tears in my eyes. In so many ways he wants to be his father, but this is a way that never really occurred to me.
Dad gets Mom forever. All the time. Dad doesn’t even get sent to a different bed to sleep.
Now here is maybe where you are questioning how ‘tough’ I’m making this child or what a ‘Mamma’s boy’ I’m turning him into … but understand this: his soul loves purely and without bias. He does the same for his sister. That same night, as I left his bed, he pulled his sissy close to hug and snuggle her at bedtime. He quietly told her ‘It’s ok Hala, you don’t have to be afraid of the dark…I’m here.’
And you know what, he was JUST as thoughtful as he gave his baby sister her gift. Something just as special, and just as well planned. He gave her a sushi pillow (stuffed, adorable) because she LOVES sushi and he wanted her to have something to snuggle in bed in case he wasn’t there.
He takes good care of the women he loves, just like his father.
So now I sit here fondling this ring he gave me in my fingers. I’ve asked him if it was ok I move it from my finger (I have really sensitive skin and this $3 ring is going to get a bit green) and onto a chain close to my heart (his Dad’s idea). He loved this thought and smiled broadly as his Nana and I worked to place it carefully on my best silver chain.
From time to time today he’s come over to the couch to show me a toy, ask me to help him read a word, or fix his shirt, etc.. and each time he too fondles the ring around my neck.
Yes.
It’s there.
Always.
And now I feel it’s my goal to make sure he knows that just like his father, his tokens of love will be with me forever.
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