Monthly Archives: May 2013

I think I need a little cheese with my….

On Thursday, The Cute went to his four year checkup. It was horrible. He’s taken to playing around when anyone asks him questions and now the doctor thinks he can’t hear or see well due to him fucking around with his answers. It was infuriating. And then they told me exactly what I was hoping they wouldn’t say…that he needs an early intervention evaluation. Primarily for speech therapy. I hate that he’s needing any help. I feel like I failed him somehow. He sucks at r/th/sh/ch/m/l. That’s almost all the problems one can have. I guess it runs in the family, as my husband also needed speech therapy…but even knowing that, it still sucks. I am still grieving. And to that I say…WTF?

Why can’t I be like my friends? One has more on her plate than was ever fair and she shines with a grace I can only dream about emulating. The other has managed to make motherhood look fun and effortless. And here I am struggling over barely a bump in the road. I haven’t handled anything with grace. When life told me that I couldn’t breast feed, I ignored the neon signs & pumped for six months to the detriment of all around me….especially me. When l first felt the pain creep in, I was suddenly at war with myself, my husband, my doctors…fighting and flailing against the sudden inevitability of my condition. Grace was nowhere to be found. I have always been, am, and always will be a tempest. And I am always ashamed of it. Of me.

And that is the saddest thing of all. 38 years of wishing I could be the person I never was or will be. 38 years of trying and failing. And never once just being content with my lot in life. That’s not to say that I’ve  never been happy. I feel joy all the time in the same excesses as my despair. I love my life as much as I rally against it. A terrible contradiction that I fear I will never escape. But I really know I should just shut up. There is so much worse that could happen. So much worse still that could. I should realize that speech therapy is absofuckinglutely nothing. I should stop whining.

Wining, Dining, & Thriving…

Star Trek: Into Darkness…. GO RIGHT NOW! SEE IT! NOOOOOOOW!

Ok. That’s that.

Now onto the day and wonderful evening. I had a date with a guy I hardly remember…
My husband.
It was fabulous. And I don’t use that word lightly. Or ever for that matter but I have been watching the entire collection of Sex in the City and now I’m taking like Samantha.

But I digress… It was birthday, take 2, and The Hubs took me out for dinner and a movie. We shared filet mignon, roasted beet salad, and a cheese fondue appetizer all the while sipping on a Cab flight. And then a movie that I have been dying for…the new Star Trek in 3D.

And it was all I hoped for. The movie and the date.  It felt like a real date. Like one pre-baby and pre-crappy illness. This night was so good for morale around these parts. I could feel the scars lighten a bit. And the smiles came easy. And the conversation, while sometimes straying toward The Cute(it’s fun to talk about our parenting adventures) , was mostly about us and our interests outside of Parentville. Two best friends finally catching up after a long parting.

This birthday was what I wanted. Scratch that, needed.

Oh and I got a few hours to start Bioshock Infinite, finally. Yes…I am that late to the party. It’s so pretty on the big screen!

 

Glass Houses

Nothing much happened today. Videotaped The Cute playing a video game…Cordy 2 to be exact. He actually just turned four but plays like a savant. It’s actually pretty impressive. I will have to post a video sometime of his game play. 

I also got a lot of incriminating looks from people as I jaywalked across the street with my son in my arms. He had left his stuffed puppy at a restaurant and was terrified that he might be stolen and we were only across the street at a coffee shop. I weighed my options. The crosswalk was enough of a ways down as to make my son feel panicked, there was only one car on the road, and we were well away from him. But from the looks of the restaurant customers and the resounding “IDIOT!” that came from said car, you would have thought I was crossing the freeway during rush hour while smoking a joint. Chill the fuck out people…My child needed quick…it was safe…and you have done worse at some point. 

A break in the clouds?

Finally a break in the clouds! The Cute and I both felt well enough to venture out into the world again! So a trip to our favorite coffee shop for ipad time seemed like a good low key start. So here I am blogging from somewhere out of house…it feels magical. And this depresses me just a little. Before baby, I was a wander bug, a gypsy. I had a house but I was never home. I hated staying in one place. Now a little coffee shop trip feels like an adventure. I have become that boring woman I never wanted to be.

I hate that I feel that way. Isn't there some moment where I'm supposed to feel content in my choices? Feel full from the glow of motherhood. The way society paints it…I should be in bliss right now. I should be spinning in circles with my child laughing in my arms…a smile of contentment permanently stamped on my face. But the reality is much more mundane. And frustrating. It's just so hard finding myself in this new world if motherhood and chronic illness. I always feel like I'm just hanging on instead of living. Holding my breath instead of breathing. Sigh.

It doesn't help that I have no support at all. Our families have nothing to offer and our friends have too much on their plates themselves. We never have a chance to date and I never have a child free moment during the day. I hope it changes a bit when he's in school. But then I will have to face my illness head on. I won't have the luxury of blaming my situation on The Cute. He's such a good excuse. But when he's out of the way… I will still have to fight the pain.

Backstory: Twelve years ago, my illness began…well, at least that's when the annoying parts showed up. It started with fatigue(sleep on the floor cause I cant make it to the bed kind)and a blurry eye…then the pain began to show. At first I thought it was some lingering issues from a couple injuries I had suffered but it got worse instead of better. Digestive problems, sleep issues, and weird anxiety followed soon after. Soon the list of symptoms grew to fit two pages. The doctors tested for everything and despite the occasional weird lab…nothing seemed to be wrong. They started suggesting it was psychological. I backed down in defeat and learned to just live with it. It was manageable.

Fast forward to pregnancy nearly five years ago…six months in, my hips were locking, my hands screamed with carpal tunnel, and sciatica claimed my every thought. My blood pressure jumped all over the place…first so low as to cause fainting problems and then so high that my right eyeball popped under the pressure. Yes, you heard that right…MY FUCKING EYE HEMORRHAGED! Holy batman, I was irritated. After the birth the list of symptoms grew and changed even more…weird heart issues, chronic colds/flus, worsening digestive issues, an extreme salt craving, extreme shoulder, neck, and lower back pain, gallbladder issues, muscle spasms, weird patches of numbness, cold hands and feet that are painful to the touch, and a raging heat intolerance that keeps our air conditioning at 70 permanently. And that's just the big ones! Needless to say, every morning is a lesson in motivational thinking.

After a horrible journey through the health care system, I was finally diagnosed with fibromyalgia just so that the doctors could stop thinking about it. But it never fit… Now after all that time, I think I have figured out what's wrong…dysautonomia with a side of mild undiagnosed autoimmune. Now I just have to get a doctor to take it seriously. I have PTSD from the bad experiences with Drs(and I don't use that term lightly….the travesty that was my first foray into this medical wilderness is long enough to fill several posts. I will tackle it another time). I have so much anxiety even thinking about starting this journey again.

Now at present…four and a half years later…I have a huge stack of bills from all the co pays and tests. A marriage that was rocked to the very foundation, and a beautiful four year old that has trouble understanding why mommy gets sick so often. It's changed every ounce of my life. I have literally had to relearn how to live my life in this new alternate dimension.

The worst part of all? The isolation. I look fine. Being an an ex-abused child, I have exceptional coping skills that leave me looking like I have it all together. But its a farce. I'm always one step from bed. And I'm always playing catch up. And even my husband can't seem to get it. He can't seem to understand the effort it takes to do the smallest things…like washing dishes or showering. He resents the cold apartment, the bills, the mention of pain. He, like most people, sees us on the same playing field. That a sleepless night for him is the same as a sleepless night for me. But it's not. A sleepless night for me can mean exceptional pain and the onset of a two week flare of severe flu like symptoms. He doesn't understand that I am constantly working with a deficit as the pain meds, that make life bearable, make life fuzzy and dull. And the normal every day stress that can make life a little difficult for him, make me feel like I'm dying. My heart rate soars to 140 and higher(I was diagnosed with intermittent tachycardia so for those of you about to suggest panic attack…it's not), my blood pressure drops to staggeringly low levels, and I suddenly have severe pain and dizziness. And that's just with the average argument. Real stress, like my mother's multiple hospitalizations or my recent gallbladder surgery, cause epic proportion melting that can last months. But I can't really blame people for their ignorance. I do look fine. And if I could walk away mentally from this nightmare, I would. As for my husband, I know he tries and he does love me… I just think that he can't handle the reality of my situation. If he fully allowed himself to understand, well, I think he would go nuts with worry. He hates to see me in pain.

As for me…I hate to see me in pain too. Sometimes I just hate me. And then I remember that this isn't my fault, that it's not fair but it is what it is. That it could be much much worse, and that I'm glad that it's me and not The Cute. But today I just feel frustrated and honestly scared for my future. That all the dreams I had are dead. That I will spend eternity in catch up mode. That this pain is forever …my heart starts racing…my hands shake…and then The Cute starts a “feet” fight with giggles and lots of “I like you, mommy” and I feel the panic subside. Who knows what the future holds…at least I have him now.

Wow… This post came out of nowhere. I was planning on writing about my illness someday…guess I just did.

 

Damn the Snot! (aka embracing the remote)

Woke up sicker today than the past week combined. Made for a tricky “Mommy” experience. I am not, by any stretch of the imagination, one of those perfect mommies that sets up a craft each day, makes perfectly organic meals, and takes a million adorable photographs in perfect lighting of all the wholesome fun we have each day. But neither am I the mom who bitches comedically about all the crap my kids do, all the chores I ignore, and how uptight we've all become whilst sipping on wine. Not that I don't enjoy reading their blogs. I do. I'm just not them. I'm somewhere deep in the middle camp. Or actually, if I'm honest with myself, I'm off some haphazard trail I've beaten out of the brush…I'm different. My middle name.

I digress… So anyway, our days are not full of schedules and predictability on a good day, but there is usually some kind of method to my madness. But not on sick days. I'm just out of commission(which happens more often due to having dysautonomia & an autoimmune condition). But The Cute has to eat. And he deserves love, attention, and cuddles. So I developed “Bed Days”. Whole days devoted to media, popsicles, cold drinks, hot tea, and books. My son loves those days(which is why the sick “no!” day flopped). We take turns picking out cartoons and documentaries to watch. We have “picnics” on the ground in front of the Tv. We take breaks to read books and play iPad games(mostly educational but fun). We cuddle the day away and talk about everything we see. It's just fun. And today was a great bed day.

I can feel judgemental eyes on me as I write that… But I really don't understand why. Just as I don't understand the guilt I feel. That I ignore. I chalk it up to social pressure because who doesn't want to eat popsicles and watch Tv when they're sick? Who doesn't want to play iPad games and cuddle in the covers? I don't get the fear over media and children. I love computers and Tv. And I parleyed them into my work. I'm an illustrator who uses Illustrator….along with Photoshop. As well as acrylic, watercolor, clay, colored pencil….you name it, I embrace it. I love my iPad and work on that too. So why should I deprive my son of all the fun? I also have a degree in psychology and nowhere in my many child development classes did I find anything to compel me to fear early media exposure. Except maybe content.

And that's why we don't have cable. I didn't want our family dealing with all the fucking commercials. I hate being sold to every goddamn minute. I also don't like being hooked on programs that force me to wait week after week as they unfold. I watch seasons in marathons over a few days if I like it. At times that are convenient. I don't want to be tempted to watch inappropriate crap in front of The Cute. I love Netflix for that. He has never watched glorified violence or sexual innuendo. He doesn't know the latest brands of cereal or toy. He only watches Tv in front of me(or my husband)so that I can talk with him about it, explain it, and ask his views. And with the iPad i have even more control. He knows I mostly read blogs and books on my iPad and he does too. We carefully choose the most amazing educational fare for him to play and limit his time a bit with pure platformers. And all I can say is that with our child, I see only benefits. He problem solves like a pro, can keep up with my husband in the Lego games, and can find his way around a computer like a 12 year old. He's only just turned four. We embrace it.

Of course, we embrace real life just as much…but then why do I feel like I have to say that? It's so interesting being a parent in a world made small by the internet. I feel so lucky to be able to look up a thousand solutions to any problem, a thousand activity suggestions at my fingertips in seconds. So lucky to be able to get a glimpse into other people's lives across the globe and learn from there parenting fiascos and successes. But there's the flip side…there's more pressure to be perfect. To be blog worthy.

And I don't know if I am, but that's not the parent I care about being. I just want my little boy to embrace life without the need to justify. I want him to love a kindle for the awesome innovation and convenience while still appreciating a book for the simple beauty of sliding his fingers on the smooth decadence of paper. I want him to love all genres of movies, books, and music without feeling the need to negate anything. I want him to look at life and take all the best bits and pieces regardless of new or old. I want him to question everything, appreciate and learn from the past, all the while enjoying, thoroughly, the present and future.

So my rambling point is that, although we never left the bed, we seized the day. As one should always do. Of course when we aren't sick around here, that means embracing the sunshine, learning gymnastics, and pretending to sail the seven seas. But on crappy days…sick days…I want him to learn that you can make the best of it too. Sure, you may have a leaky faucet for a nose, a sinus headache, and a sore throat….but that's just the perfect day for abject decadence. Hell, that's how all adversity should be faced,in my opinion…with fun, cuddles, and a fizzy, cold, chocolate soda…oh, and a massive amount of cartoons.

 

Blah and more of the blah

Today is my birthday. I’m 38. And it was a blah day. Blah because my whole family is sick with a cold including me. Blah because as much as my husband tried, it was hard to counteract nausea, a headache, and no appetite.

He got some balloons which I wanted…and that was nice. He got me some great gifts….and that was nice too. But we were all a little out of it and that makes for some blah.

Plus it doesn’t help that my mother forgot my birthday again. She’s done this more than once. I feel very unimportant. And blah.

My friends are all really busy lately and none of them would have had time to celebrate…and good thing too, since we would have had to cancel due to illness. Blah

I’m sad. I’m nauseous. And I’m incredibly lonely.

For the past four years…my birthday has fallen to the wayside and I really didn’t care…till today. Sigh.

It’s totally no one’s fault. I’m just…sad. And feeling a little insignificant. And no change in sight. Oh well.

blah.

Shit….meet fan.

Shorty after my last post, things got bad. And by bad, I mean “Holy Batman” levels of bad. The Cute suddenly made a play for world’s most annoying child ever, my sick levels reached insane proportions, and my mental state plummeted. And as easy as it would be to just write it off as a shitty behavior day on the part of my child, I ended up owning “worst mom” instead.

My four year old son is a handful. He can be demanding, stubborn, and irritating. He’s also brilliant. “400 piece puzzle” brilliant. And he’s passionate, imaginative, and incredibly sharing and caring in regard to others. And all that comes in a super sensitive, highly needy package. Just when I think I have a handle on things…I find out that it’s all bullshit and really, I don’t know a damn thing. He’s such a dichotomy. So smart and aware in some ways and so very immature in others. It’s really hard defining realistic expectations. And that’s where I blew it.

Our first “No!” day was a success. But that was a week ago and he was not sick. And I kept it simply to the lesson of no. But then I got cocky…and tried it on a day of sick. No one wants to learn things on a day of sick. Add to that a cocky, sick mom also trying to correct other behaviors at the same time…and the cranky, incredibly smart, four year old is going to correct her right back. I was insensitive, demanding, and rigid. I got owned and if I’m honest with myself…I deserved every miserable moment of it.

I should have been soft. I should have been full of hugs and treats. I should have been full of movies and popsicles.  I forgot to be compassionate.

At first I was fully depressed at just how shitty the day had become. I was unreasonably angry at him. And then suddenly at myself.

Then I was disappointed in myself. Disappointed that I had forgotten my promise to remember how it feels to be a kid. Because I remember a very unpleasant childhood. One that has left scars forever. And I don’t ever want to give him scars. And, of course, one day won’t do it. But it doesn’t take much to forget that one day turns into two and then to weeks. It takes constant vigilance to avoid becoming the parent I feared. They don’t turn into monsters overnight. They justify and ignore. They blame the day, the job, the child, the world…bit by bit they forget their own power….and then the wounds pile up.

But I won’t let myself slip into that. I can’t promise to be perfect…but I can promise to be vigilant. Vigilant enough to adjust the course when things turn south.

And so came yesterday.

I apologized and explained that mommies make mistakes too. That today would be about cold drinks in front of the tv, lots of books read….and lots of cuddles. And we would work on “No’s” on a better day. And guess what? I got a big hug, a reassuring “that’s ok, mommy” and no “no’s” for the whole day.

I guess I needed a lesson from him.

The Cute is a great teacher.

It’s a “NO!” day

No montageToday is a “No!” Day.

The Cute has been saying no a hundred times a day. Sometimes more. Last week we came to an impasse. I was going to shove him in a closet till this phase was over. I looked it up and found that it was illegal. Damn. So time to get creative…

Essentially, I’ve created a scenario where he gets to experience No from the other side. On a “No!” Day, I say it to everything.
No, Mommy won’t play with you. No tv. No iPad. No. No. NO!

He hates it. Go figure….I thought it was just me.

So it’s working. And now his total “No’s” have dropped to less than 10 a day including tantrums. After six, the following day is a no day. We’ve had 2. It’s a minor miracle. Of course, he’s not perfect and earned one today. And today it’s kind of backfired. I’m sick…he’s sick…and it would be really nice to just spend the day in front of the tv.

Sigh.
But it’s a small price to pay for my sanity on most days. And it’s helping him learn to use other ways to assert his independence…like using loud toys near mommy’s ear when she asks for quiet…or acting deaf. Well, it’s baby steps, right?

Blogs and Snot

Hi.

This blog is going to be just about my life. My life as a 38 year old mother, wife, daughter,friend,  patient, daughter-in-law, artist, and human being. I want to try and remember the details in my life that seem to slip away with the chaos. I want to share my story to help others if I can. And I want a record of my life for my young son to have when he’s old enough to really know his mother.

So to jump right in… let’s just start with today.

The Cute is sick. It’s really nothing new. He and I are always getting sick. At least it seems that way. The books say that young children, on average, get sick every two weeks. And that is why I call him the Germ Factory.

I, on the other hand, am just fucked. That’s right. FUCKED. For the past 12 years…if there is a virus or bacteria…I have a 50/50 chance of getting it. And for the last 4 years…it’s risen to 99%. I get everything. And it’s not just that. I get pain added in for good measure. Heaps of it. You see, I have a pain condition. A pretty annoying one. The doctors (I hesitate calling them that) have so far diagnosed Fibromyalgia, but after careful research and the cropping up of some more disturbing issues such as intermittent tachycardia(rapid heart rate) and palpitations, a severe salt craving, blood pressure issues, and crazy body temp regulation problems…I think it’s closer to Dysautonomia with a mild, undiagnosed autoimmune condition to make matters more interesting. It’s been a bit complicated around here since the pregnancy gave it crack. It’s become The Beast.

So anyway, I hurt today. And my son is booger faucet. And a bipolar nutball. But a damn cute one at that. I hate how crazy he gets. He reminds me of how chaotic I was as a child. It was so hard to deal with my emotions. I see, in him, my ups and downs. My passion and my utter despair over seemingly random, petty things. I hurt for him. And then he uses that annoying whiny voice and I want to crawl inside my body to get away from it. Ugh, I hate the whine.  And it’s especially annoying when all I want to do is drown in covers and sleep off the pain. But I digress…

So today has been pretty boring. TV and iPad. Popsicles and cold medicine.

I love my life and my child though. And I’m so lucky to be able to snuggle him through days like today. I’m so lucky to be able to lay down when I need to. To have this kind of day. Just a boring, average, amazingly lucky day of snuggles and snot.

Ok…fuck the snot.

(Not an amazing way to start a blog but, hell, I had time. And when a mom has time…you do something with it if you can.)