I love my geeky, gaming, gigantic-hearted children.
I Want My Uterus Back
April 13, 2011 by 40 Comments
…and the ovaries and cervix too.
This is my daughter and I as we attended our first BlogHer conference in 2006. She’s on my hip, and there is nothing quite like the feeling of a baby on your hip.
I want a baby on my hip forever.
That’s really what this boils down to.
I had a moment this week, looking at a baby on tv, and I ached.
I ached so hard and so bad I had to get up and walk around the house for a minute. I stood up from the couch and took a few steps into my hallway where all I could see were the kid’s toys scattered across the playroom. So I averted my eyes, looked up, and found them glaring at our fireplace mantle, riddled with photos from over the years. One with me, holding my son, who couldn’t have been more than two. All chubby cheeked and round.
I could feel his diaper under his clothes as I patted him on his butt. That pat, pat, pat, hallow sound only a diaper under clothes makes.
So I turn the corner, walk up the few stairs into the dining room and glance at the cabinet holding the photo of my husband and daughter. She can’t be more than two and still showing the plumpness of having been breastfed.
She’s got her tiny, tiny fingers gripped around Aaron’s shirt- holding on to her Daddy with that baby vice grip. The one that would also entrap my hair and her brother’s toys. The cat’s tail. Those tiny, STRONG fingers that hold so so tight as only a baby’s can.
The kitchen. I will walk into the kitchen, it must be safe there.
The ‘kid’ cabinet is open. Plastic plates and cups are strewn about as if one of my spawn was just inside said cabinet…rummaging for God-knows what. This leaves the forgotten items in the back exposed for me to see. Old sippy cups. The ones I should have thrown away years ago. The ones we used while transitioning the kids from the breast. That white and pink one with the butterfly. The green and navy blue one with the stars. A thousand warm and fuzzy memories fill my brain just from those two cups. From cups. Simple cups.
I feel like I’ve been punched in the gut.
It all seemed to happen so fast. Was it really Lupus that took my uterus? I had pain, yes. I had horrible inflammation, yes. But did we really do everything we could have to save my reproductive organs? It’s all such a blur. Was this my choice? To rid myself of the pain and trouble? Was it entirely necessary? Sure my uterus took a beating, and sure it had been through hell…but what if I could have carried just one more baby. Just one more pregnancy.
Just one more.
I had a chance to do just that. It didn’t happen. It would have been beyond hard for many reasons, but my body did have a chance. And it’s the chances that leave me wondering endlessly.
The decision was made long before my uterus left though. There were to be no more babies in this house. My husband and I knew this. But the hope…the off chance.. the idea… reversals do happen, they have been done.
Now. Now this can’t be undone. You can’t put organs back in, you can’t give me back my periods or all those eggs. You can’t reverse a hysterectomy like you could have a vasectomy.
Nevermind I was terrible at being pregnant. I forget all of that each time I see my kids. Was Lupus the reason I barely carried my children to term? I spent months on bedrest? I had so so so many problems and was high risk? Could that beaten and battered uterus have done it just one more time? Was there any chance of convincing my husband to undergo another procedure?
I may know the answers to all of these, but it doesn’t stop me from wondering. Not when I feel that tug in my gut when I see baby, hear someone is pregnant, or look at the children we did create. It doesn’t matter that the answer to all of the above is no. It just doesn’t matter. I still wonder and it still hurts and I will wonder forever.
I will wonder each time the kids ask me for a new brother or sister and I delicately remind them their Mom has no uterus.
I will wonder as my mother-in-law and I drive past a garage sale and she notes the baby crib on the sidewalk, and I almost open my mouth to apologize for not giving her more grandchildren…and stop, and turn my head, and pretend not to hear.
I will wonder forever if that total hysterectomy was necessary and if I could have gotten pregnant just one more time and if I could have had just one more baby to hold and to coo over and to raise.
Maybe if my life were different I wouldn’t sit here and wonder so damn much. Maybe if I didn’t have that husband who’s like UBERSUPERDAD, able to leap tall Lego structures in a single bound…and maybe if I didn’t have the most amazing, kind-hearted kids, who truly want nothing more than to cuddle with me. They just make it so damn easy. They make it only natural to wonder, because who wouldn’t want more more more more of this life? You’d be crazy not to.
But the truth is, I do not want to wonder for the rest of my life. It’s a torture of sorts to wonder forever.
So I’m choosing to stop wondering and moving on to just demanding the impossible:
I want my uterus back.
36lbs of Might
April 11, 2011 by 5 Comments
I gave Red Feather a nuzzle on Sunday, again thanking him for keeping my baby safe during her second horseback riding lesson.
It seems my just-turned six-year old has found her calling.
I know every little girl loves horses. I did at her age. I still do. I’m not sure what it is…for me it was that whole fuzzy, furry, lovable ‘pet’ thing…but also the power associated with a horse. I felt much more than my age when atop a horse. And my tiny peanut of a daughter…all 36lbs of her…must feel strong and sure as she grabs the reigns and clicks her heels.
36lbs and she’s telling this majestic creature where to go and what to do…and she does it without hesitation and without fear. Her tiny voice yelling “JUMP!” or “Woah!” is really enough to make you laugh a bit, thinking this powerful animal will obey…but Red Feather dutifully does as she commands, thus giving her confidence and even more spunk as she attempts to post at a faster trot.
And a cowgirl emerged.
Maybe my little girl’s love of riding won’t last long. Maybe this is another phase. But I doubt it. This is the two-year old who wanted nothing more than to ride a horse. This is the three-year old that wanted nothing more than to ride a horse. This is the four-year old that wanted nothing more than to ride a horse. This is the five-year old that insisted for her sixth birthday she was getting on a horse.
…and now she may never get off.
Candles and Pink Coats
April 7, 2011 by 16 Comments
Someone is going to have to rent a storage unit when I die and move all my shit into it’s sorry, cement walls because my husband does not know which candle in our house was used during our wedding.
Ok let me back up.
Everyone needs to stop, find those they love, and explain to them what they want when they die. This might be as simple as what to do with your jewelry, to what you would prefer happen to your children after you are gone.
Morbid, I know…but necessary, even if you are not facing a life threatening disease.
Which leads me to what I want, and how you all will need to force my husband to keep everything I own until it can be properly sorted, because he’s going to throw away our wedding candle.
You see we have been having these important conversations and the other night I expressed to him that I didn’t want him to throw anything of mine away. I mean, I don’t want him to go all Hoarders on everyone, but that he needed to hold on to nearly everything so that when the kids are older and wiser they can sort through it all and decide what they would like.
This lead him to looking at me with that look he always gives me, the one that is half ‘you are insane, woman’ and half ‘go on.. go on…because I’m going to totally make fun of you once you finish explaining.’ THEN he proceeded to say something like ‘that’s crazy… I mean, like that candle over there, I’m totally throwing that out’ … which lead me to screech something like ‘YOU MEAN OUR WEDDING CANDLE??!!!!’ which made his face drop slightly, realizing he had no clue that was our wedding candle and he was busted, before blubbering some nonsense about me having too many candles around the house and how the hell was he supposed to know…blah blah blah. Thus totally confirming my suspicions that I need a storage facility for all my things to be kept in after I die.
Is this all making sense yet?
Let me take another deep breath and try again.
See that pink coat I am wearing in the photo above? I had been teasing my friend Gregg that I was going to will him that coat upon my death, because he got such a kick out of my purchase and subsequent flaunting of said coat. It amused him greatly that not only would I just up and buy an obnoxious, vintage, hot pink house coat with a faux fur collar and broach…but then wear it out to an event where he could snap photos of me in the monstrosity. It made him laugh. And it made him laugh even more that he could take that picture you see up there, complete with me drinking a dirty martini.
This morning I woke up to find out Gregg lost his battle with cancer.
Gregg who was supposed to be the one to take the obnoxious pink coat off my hands when it was my turn to leave this world.
My wedding candle sits on my dresser. The pink coat remains in my closet. And everyone needs to have these conversations, because sometimes you wake up and the whole world has changed.
Now I’m off to rent that storage facility…unless one of you promises to do it for me.
Gregg, I will miss the hell out of you my friend.
Zig, Zag, Zap
April 3, 2011 by 13 Comments
A lot goes on in an eight-year-old brain.
Imagination runs wild, darting through blasts of genius and chaos and inventions and chores, my son only seems to calm down when in my arms at bedtime. I’m not sure what finally shuts off in his head, but the switch is flipped and he can nestle next to me and serenely tell me about his day, about his worries, about his ideas without the swirling and swirling that usually takes over his brain.
This is the boy that, like his father, doesn’t stop moving. This is my son that does ‘laps’ in my house from wall to wall, sprinting between Lego constructions. But this is also the boy that tonight, curled next to me and snuggling said, ‘Mom, why don’t you blog about how I like to lay with you at bedtime.’
And lately he never wants me to blog about him. Or take his photo. These are all requests I respect as he gets older and can not only read what I am writing, but also can and should have some control over what it is put out there about him on this world wide web.
So tonight, as he’s next to me watching as I type, I want him to know that I can feel how calm he is. I want him to know that if I could, I would take that peace and bottle it, and send it with him as he goes off into the world every day. That safety, that quiet.
But I also want him to know I wouldn’t trade it for the brilliance that is inside his sometimes chaotic but beautiful mind. While it may be hard for him to make sense of all the ideas firing left and right and up and down and back and forth- they are his ideas. His amazing thoughts and dreams. And one day he will harness them. He will learn to control them. And he will not need that bedtime zen he gets from hearing his mother’s breath and heartbeat.
He tells me as I write this that snuggles at bedtime are the best because he gets to be with me, yet I am here all day. I say it’s not just that he’s with me, it’s that he’s calm. He’s tired, he feels safe, as though he can turn off some of the zips and zigs and zags and zaps that never seem to end in his fast-paced body.
Yeah Mom, that too…but I have you here and I wish you could just be with me all the time, then I could feel like this forever.
Me too baby. Me too.
More, More, More
March 31, 2011 by 11 Comments
On my daughter’s 6th birthday, I began to write again.
My brain isn’t doing exactly what I want it to do. Well, it is.. but it’s tricky. I’ve written several blog posts over the course of the past week and all have such glaring errors I had to just shut down my computer in frustration.
But with that frustration has come two weeks of energy. Of feeling good. Ok not good, but functioning. While my brain plays catch-up, my body is saying RUN RUN RUN GO GO GO. So I am playing this strange balancing game between a body that is finally willing to do more than sit, and a brain that is fogging over from time to time, forgetting where it is supposed to be and what it is supposed to do.
It’s frustrating, to say the least.
The past 10 days have been such a rollercoaster it’s hard to know where I stand. What I do know is regardless of what I do, the entire house feels the ramifications.
Even though I’ve been able to do more- from attending a concert to making home-made baked goods for both the kids’ birthdays- we haven’t gotten a hold on this active flare or this inflammation, and we’re still struggling with the news of my ‘stroke’ … so it’s like walking around in this half-daze of cautiously optimistic and waiting to be hospitalized. And the kids, despite our sheltering, have obviously caught on.
Tonight’s games and fun included ‘Pet Hospital.’ Of course my kids can’t just play normal Pet Hospital…they need to hook turtles up to elaborate life support systems.
Healthy play as they work through the chaos and ups and downs of Mom feeling good and feeling bad and on the couch and playing catch in the backyard. It must be how they deal and make sense of me one day being SuperMom delivering 42 cake pops to Kindergarten, just a week after delivering 20 home made butter beer cupcakes… and the next unable to lift her legs to get upstairs.
Consistency. Normalcy. How I crave these every day things. And now, my one release…my one outlet, is being slowly striped away as if it were just another organ. Just another casualty of this disorder.
I will not give up writing. Even if it takes me all week to get a post out. Even if I have to think way harder than I used to just to make sure this sentence makes sense.
Don’t get me wrong, it’s not bad. Not…bad, bad. It’s hard to explain. It’s as if everything is normal, but just…off. It’s not exactly normal. Something is just not right. If normally my life sits at five, something – presumably the stroke – put me at five point two. Just a smidge off. Walking up the stairs, it’s as if I have to think so my legs don’t miss that rhythm you need to go one foot..then the other. But not by much, just by a tiny smidge.
I’m not afraid though. I feel strong. I feel like myself, even if it’s only inside my head and I can’t get it all out. I also know this is just another stage- one I have no doubt we will pass through and conquer. I’ll see the neurologist soon, we’ll do what needs to be done. And I will continue on this path of finally feeling functional.
There will be more home made birthday cupcakes. More concerts. More birthday cake pops. More games of catch in the yard as my daughter finally nabs that popup and my son whips the ball harder than he should just to see a weed break apart in a million pieces. More walks around the block. More being able to get out of bed and pack lunches and more talks to reassure those who love me that I can, in fact, drive myself to the doctor.
More…just…more.
And I can live with that.
Crayons and Coordination
March 24, 2011 by 31 Comments
I found out on my son’s 8th birthday that I have inflammation on the right side of my brain and at some point, I suffered a small stroke.
Apparently this is typical of Lupus.
I could hear my doctor talking, and I was writing down what he said…but I couldn’t get my mind past words like “stroke” and “right side of brain” and, well, “stroke.”
Maybe it didn’t help that I was scribbling notes on construction paper. Using crayons.
The doctor talked about things like my recent forgetfulness and coordination issues. The trouble and pain I’ve been having in my arms. Legs. Worse on my left. Those days when my left arm feels like a dead weight. The past weeks upon weeks where I swear I can’t see as well as I used to or misjudge the edge of the bed, each time bruising my left shin.
Sigh.
The real kicker here? I’ve felt better this past week. Better than I have felt in a long time. Figures, right? Luckily feeling well means I just have renewed energy to put on my battle gear once again. Not that I ever took it off. Damn, I was really hoping to take it off soon.
Eventually.
In the meantime, I’ll continue to write down everything so I don’t forget. I’ll visit more doctors tomorrow, adding neurologist to the list…and I will continue to focus on the things around here that really matter. That newly minted eight-year old, the soon-to-be six-year old, their Dad, and all the parts of my brain still capable of feeling their love.
Braaaaaaaaaaaaains
March 22, 2011 by 3 Comments
I’m trying not to worry. I think I have a pretty brain. Can brains be pretty?
I think it’s pretty.
Despite losing many organs, Monday’s TB test and Tuesday’s MRI sucked. The TB test is a formality to make sure I’m healthy enough to start a new drug. The MRI, well… let’s just root for ‘all clear’ .. k?
In the meantime enjoy my pretty, pretty brain.
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