Being Different Sucks

I really don't want to sound like a big whiner, but sometimes.....being different just sucks.

Like right now. The process of finding a place that can manage to make the sort of eyeglass lenses I need as a visually impaired person.

My prescription is too strong and complicated for your average optical store. I knew this before I began. Yet I am surprised at just how difficult this is turning out to be.

It doesn't feel good to be handed off from one eye care professional to another. My ophthalmologist didn't think he could do my refraction well, so he sent me to an optometrist he thought could. The optometrist couldn't figure out my reading lens, so off to a "low vision clinic" I went. The low vision clinic was able to figure out my entire prescription, but they themselves do not have a lab for making me a pair of glasses.

Which I think is lame and pretty half-assed of them, but whatever.

I went to the optical department of my insurance carrier where they told me their lab could pull it off, I picked out frames and the glasses were ordered. I was so excited, expecting to have new, fresh, pretty glasses on my face by Mother's Day.

Then I got a call that completely deflated me. Turns out that lab couldn't make it work and my order had to be cancelled.

I cried.

I have been wearing the same glasses for over 10 years and now that I'm finally trying to make this happen for myself, I feel like I am being jerked around at every turn. I can't understand why, when 10 years ago I was able to get the glasses I needed, it's so damn difficult today. I would have thought I had built up this big annoying process in my head, only to find out that it's not that big of a deal after all.

But I was right. I was right that this was not going to be fun and that I would have to jump through a whole bunch of hoops.

I am not happy to be right in this case. I wish I were wrong. I think I should be wrong. Because TEN YEARS! Shouldn't there have been many advances in eyeglass technology by now? Shouldn't it be more commonplace for someone with low vision to need glasses? And shouldn't optical companies want to accommodate that need?

And after 20 years of being visually impaired, shouldn't I not feel like such a freak anymore?

I want to tap into my zen attitude of well, maybe those weren't actually the right frames, I will find the right place and the right frames and lenses and it will be FINE. Then there's that old adage, "Things worth having never come easy", or some shit like that.

You might be thinking, jeez, it's just a pair of glasses. But what you don't understand is, my ability to see just half as well as you is what's on the line here. With corrective lenses I am still visually impaired. I cannot be corrected back to 20/20, no matter what.

It's about my comfort level as my current glasses pinch my nose and dig into my right ear. It's about maybe being able to feel a little bit prettier.

This matters to me. It's not trivial.

The very best thing said to me as I've expressed some of my frustration was:

All the good people are freaks. Let your freak flag fly and chin up! All will work out in the end.

So alright, I will try not to be bitter about this. I will try to let it roll off my back and look to the end result.*

*But for the record, I'm stomping my foot right now!


Linked up with Pour Your Heart Out.

Drawing a Line at 39

I am beginning the final year of my 30s and I am drawing a line in the proverbial sand.

I often characterize my daughter as "slowly but surely". I'm beginning to think the same of myself.

Because I think I should be past many of the "issues" I have by now. Certainly by the time I turn 40 next year.

But then again, I am who I am, shaped by my experiences, and I am where I am, regardless of any self-imposed (or someone else's) timeline.

Who gets to define where I am in my life at what age?

There's a song I love by Sara Bareilles. Perhaps you've heard it. A lyric in the chorus goes, "Who died and made you king of anything?".

And there lies the rub. I don't have to apologize for anything about myself. But I do have some things I would like to be different by my next birthday.

I am sick and goddamn tired of feeling like I need someone else's approval in order to feel good about myself!

That's the biggest thing.

I want to stop doubting that people love me and want to be in my life, warts and all.

It seems that being different than others, and having had a few "fair weather friends", makes you wary. You think, "it would be much easier to have someone 'normal' for a friend. Why do they stick with me?"

Doesn't matter why. Trust it.

Whoa.

I am going to keep working on healing my wounded inner child. And then let it go.

Over the next year I am going to keep working on making myself healthier, mentally and physically, so that by the time I turn 40, I can be proud of it.

And all the big, scary things there are to face?

I am resolved to being confident in the courage I am somehow always able to draw on. It's like, down in my gut. I feel it there. Like armor.

I can do this.

_______
I feel so sure of these things I've written just now. But I must admit, there is still this tiny little voice saying, "I can do this......I hope." But HOPE is my word for this year, so.....there we are.

Linked with Pour Your Heart Out.

Feelings

I am a massive mess of feelings. Not only feelings I currently have, but feelings I've had all my life, whether I could recognize them or not.

I hate my feelings. I resent how easily they are hurt.

Must be why I have a tendency to try to ignore them.

Just like anything you try to ignore, however, they keep coming back, pestering me like a little toddler who wants a piece of candy.

I think I need to name the feelings that continue to plague me. Flesh them out. Hoping that exposing them to the light will cause them to shrink. Take away their power over me.

I feel....

Weak.

Meek.

Alone.

Insecure.

Hindered.

Lost.

AFRAID.

Overlooked.

Raw.

VULNERABLE.

Bitter.

Unimportant.

Guilty.

Stupid.

Sorry.

I emphasize AFRAID and VULNERABLE because I have truly had some scary ass shit happen to me. Of course I'm afraid! I feel vulnerable that more scary shit is going to happen. That scary shit will always happen. And vulnerable to being left alone and sad, and hurt.

I am desperately trying to push my way through these feelings. Trying to do it all by myself because another thing I feel is like I can't talk to anyone about them. No one who I'm not paying to listen. Or it's that there are certain feelings I shouldn't talk to certain people about.

Honestly, none of MY feelings are anyone else's problem, are they?

I lean on my husband a little, but I keep thinking about how he might not be there to lean on one day, so I pull away, even from him. And I know I am going through all of this now, in preparation.

I am overwhelmed by these emotions, tears waiting for any little excuse to spring forth.

How long will it be before the floodgates that have been opened close?

I feel weak and meek, but therapy, and facing one's inner demons, is most definitely not for the faint of heart.

Trying to have patience with the process. I remind myself that I will be made stronger as I learn how to change how I perceive my feelings.

_______
I understand if this post doesn't make much sense to anyone. It doesn't have to, and nobody needs to feel like they should try to make it better. These are just things I feel, that influence my moods, that I struggle with.

“Love is more than simply being open to experiencing the anguish of another person's suffering. It is the willingness to live with the helpless knowing that we can do nothing to save the other from his pain." - Sheldon Kopp


Life goes on....

Linked with Pour Your Heart Out.

Slow Down, Little Man

My son is always in a big hurry.

He's got places to go, things to do, people to see.

He chooses what he wants to eat based on how long it will take to prepare.

AJ extends this quickness to his learning. He is inherently able to pick things up without much effort. When something does take more practice, he gets very impatient and frustrated.

Things that don't come easy make him feel dumb and he beats himself up for it. He doesn't want to do things he thinks are too hard. AJ thinks spreading peanut butter is hard, so he doesn't want to do it. Yet he can run the electronics in the house and ride his bike with no hands.

We had our spring conference with AJ's teacher last week. She pointed out that she has noticed most of the mistakes he makes on schoolwork are because he is simply going too fast.

An interesting point she made, and what made me think of Mr. Ferris Bueller, is that while AJ may be able to continue advancing along on his reading levels, she doesn't necessarily want him to....so fast. He is already above grade level and she wants him to slow down a bit.

Her reasons being A) if he gets too far ahead, we'll run into books with subject matter inappropriate for his age, and B) she would like him to slow down and ENJOY the books that are perfect for a 7 years old.

I found this to be kind of deep.

Knowing AJ's proclivity for doing things as fast as possible, I believe one of his life lessons is going to be about slowing down. He will need to learn how to stop and smell the roses, to take a deep breath and be still.

And to find some patience.

To my Little Man I say this: You are smart and bright and funny and oh so handsome. It is amazing to be a motivated learner and go-getter. You will certainly go far in life. But dude, Ferris and Mrs. V are right, you gotta stop and look around. Relish in the moment. Soak it up. Soak it ALL up!

You have a competitive spirit and want to be the best at whatever you do. Of course you do! Should your teacher and I want you to slow down a bit, encourage you to pace your learning a little? I don't know. I can see that it may seem counterintuitive, that we should only want you to learn as much as you can.

And of course I do want that for you. But I also want you to look around and really SEE the world around you. To marvel in it and appreciate it. I don't want you to take anything for granted. I want you to be able to be quiet and enjoy that as much as you enjoy constant stimulation.

Well rounded and balanced. Whatever it is you decide to do over the course of your life, that is what I ultimately hope you will achieve.

Well, that and happiness.

Is that too much for a mom to ask for her son?

Linked with Pour Your Heart Out.

I Am More

Over the last several weeks I have written and published some pretty heavy and/or meaningful posts.

Each one serves to take whatever weight the subject matter was placing on me off, or at least lift it for a time.

But I have to admit, I'm so tired of the heaviness right about now. Tired of feeling so serious all the time.

Tired of my issues. My circumstances. My anxiety.

Tired.

That is not all there is to me, to being me. I am so much more than my husband's health problems, my anxieties or my bad eyes.

I am a mom of two great kids whom I love with everything in me. They are the lights of my life. They can be very annoying and difficult, but they make everything better. They give me reason and purpose, strength and resilience, laughter and hope. It is my greatest joy to be their mother.

I am a daughter who loves her parents very much. I hate the distance (two states) between my mom and I, but am so grateful to have my dad close. Close geographically and in my heart.

I am the kind of friend who feels like her girlfriends are the sisters she never had. I would do anything I could for them. Sometimes it bothers me and hurts my heart so much that I am limited in what I can and can't do for others.

I am a wife with a fantastic husband! Our marriage is made up of so much more than our struggles. We will be married 15 years this July and I am very proud of that. So grateful that we will be able to celebrate that day, that milestone. He makes me crazy some days, but to say I am "thankful" Mark is still on this earth with me is a gross understatement.

I am so much more than my fears and anxieties. I am able to see the beauty around me, find joy in the littlest of things. I feel with my whole heart, even for total strangers I hear about on TV or read about on a blog. I have hobbies, watch TV, see movies, listen to music. I covet comfort.

I am proud of myself for doing the work I need to do on myself. So I can be the best version of me possible.

But it's hard work and I know I will need to write about it more. Even if I think I don't want to. Which is how I feel right now.

I just don't want to be seen as someone who is constantly struggling, always heavy and burdened. Because that's only part of my truth, not my WHOLE truth.

I am becoming more.

This Is My Path

Throughout your life you make choices and decisions that set you upon some path. Perhaps they are simple and straight, or complicated and winding. They all have ups and downs.

When I made the decision to marry Mark and build a life with him I knew it could get complicated. Inasmuch as you "know" these things before they happen. You can intellectually know something without ever really being prepared for it.

In fact, I believe it is near impossible to truly prepare for something. But don't we all think we can? We plan every detail of our wedding, only to have some unforeseen snaffoo occur. We concoct detailed birth plans when expecting our babies, but labor rarely goes how we think it will. You can make yourself to-do lists all day long, and still forget something.

You can have a husband with multiple health problems and think it only logical that you will outlive him, worry, fret and be filled with anxiety over it till your head is spinning....even mentally plan and prepare for when that day comes, and it will probably still blindside you.

I learned this particular lesson, and really took it to heart, when my friend passed away in 2007. Everyone knew her cancer had taken over and she was dying. Yet when I finally got the call, I couldn't believe it. These things just cannot be comprehended in an instant. That is why there is grief.

I am on a similar path as my friend's husband. Longer and more drawn out, but similar.

And now, I really need to get something off my chest.

How I handle my life, whether now or later? It's all mine. It's for me to figure out, for me to navigate.

It doesn't need to be anyone else's concern how I choose to handle the possibility of becoming a widow and single parent. There should be no judgments.

There is nothing my friends or family -- or any of you -- can do about Mark's health problems or what might happen. But what happens after is something people think they can help me with. They will still be here, know I will need some help and want me to feel empowered now rather than wait until it happens to try and figure whatever out.

But all that really is, is trying to control the situation. A circumstance that no one, not even me (or Mark), has any control over. Further, focusing on the end now robs me of today. I've said it before, I am trying to balance present reality with future possibility.

Quite honestly, the notion that someone else thinks they know better than I how to handle my life kind of offends me. It offends me that I may not be being given credit for probably thinking about the whole picture. Given credit for being a grown woman who has had many years of practice at taking care of things and feels she can continue to do it, on her own, when she has to.

This is MY path to walk. And I feel that those who have no idea what it's like to walk it, to be worried day in and day out that their spouse will die, can even remotely understand. Until your spouse is sick and you're faced with the idea of losing them, and your children losing their other parent, you can't know. You simply cannot know this struggle unless it happens to you.

I do not want to be told how I should walk my path. I do not want to be judged for how I walk it. Unless I ask for help or advice, I want it to be assumed that the things that are on your mind are most likely on my mind as well.

One thing I don't think anyone should be able to accuse me of, is burying my head in the sand.

I deserve to be respected for how I bear my burdens. I respect others in how they bear theirs. I would never presume to think I know what's best for someone (other than my children). I will not voice my opinion on another's personal matters unless they ask it of me.

I don't mind being asked, "Hey have you thought about...?" But to TELL me how you think I should handle something when I didn't ask for your opinion....it's stepping over a line. And it doesn't feel good.

Companionship and compassion feel good. Hugs and smiles, and just love feel good.

I'm walking my life path the best I can. I may stumble. I may stop and smell the roses. I may sit awhile. I will keep walking it. Or running or skipping! The point is, it's mine to travel.


Enthusiastically linking up with Pour Your Heart Out!

Don't Admire Me

Shortly after entering Mark's life I was hailed as his "personal savior".

It was flattering, and helped me feel like his family liked and accepted me. But it also undermined Mark's own efforts at getting his shit together.

When his kidneys failed and subsequently had his transplant, I was like a saint or something for standing by him, for staying and dealing with it all.

Sure, we weren't yet married and I could have said, "To hell with this crap, I don't have to take this  on!", and walked away.

But I had fallen in love with him. That love must have made me brave. I wasn't afraid back then.

While Mark was at his healthiest we got married and had our daughter, never once thinking the transplant would last only 6 years. Things weren't perfect, but he had done so well, seeming to have beaten all the odds. With a precedent like that, you have all the hope in the world.

We were crushed when the transplanted organs rejected and Mark went back to dialysis and insulin dependency. The wind sucked out of our sails and set us adrift.

Eleven years, relocation, another child, a house and two very big health scares later......it's hard to wrap our heads around everything we've been through.

Yes, I've managed to deal with it all. I've kept my chin up, pushed forward, held out hope and fell in love with my husband over and over again.

But it hasn't been pretty. There have been fights - ugly fights - things said that hit below the belt. Impatience. Selfishness. Tantrums. Not just from the children.

I still hear over and over, "I admire you." or "You handle it all so well. I don't think I could do as well as you have."

Don't get me wrong, it's good to hear that others think I'm doing a good job. Who wouldn't want to hear that?

On the other hand, sometimes I feel like a fraud. A fake.

Because a lot of the time, *I* feel like I'm holding it all together by a thread.

Also? What if, at some point, it breaks me?

Will you still admire me then? Or will I disappoint you?

I get angry. I get sad. I get disheartened. I get selfish. I get intolerant. I get insecure. I ball up my fists and stamp my feet.

I never "saved" Mark. I've just loved him. Loving him is really the easiest thing in all of it. He's loved me back and given me babies. It's not as if I've gotten nothing out of the deal.

So don't admire me. Don't put me on a pedestal. I'm just a girl who loves a boy who's sick. I'm just a girl doing her best with what she's given each day.

Linked with Pour Your Heart Out.

This might not make sense...

My favorite online doctor friend Deborah Gilboa recently shared a blog post on one of her Facebook pages titled "Embracing My Inner Old Lady" that I could completely relate to.

The blogger, Adina, described herself:

My skirts have elastic bands and I refuse to wear anything that isn’t comfortable. I don’t like to clutter my days with too many activities. For instance if I have a doctors appointment, and I have carpool, I will tell my friend that I can’t meet her for coffee, because my day is filled up. 

Well paint me green and call me Kermit, it's like she's in my head!

Except, skirts? What are those? I don't have any. But if I did, they'd be just like hers.

I have a very good reason for not appreciating busy-ness. To me, all it does is cause stress. And because my husband's health problems can lead to so much upheaval, I kind of cherish the calm. I honestly do not understand why some people are always go, go, go, do, do, do.

In fact, it seems that whenever something more than regular, day-to-day life comes up, like say, the Holidays, we're lucky if we make it through without incident. It's very difficult for someone with a lot of medical issues to juggle to have their routine messed up. Keeping Mark as healthy as possible is quite the delicate balance.

I may not lead a hectic lifestyle, but I am rarely bored. Home, marriage, kids, friends, family, errands and appointments, hobbies, exercise, entertainment and blogging all fill up my time. Pretty sure I'd be hard-pressed to look around and not be able to find something to do.

I know this to be true and I swear I am very content with things as they are.

I think I feel held back, however. Like, I am happy with my lifestyle, but I also feel like I simply don't have a choice. I even had a dream the other night that, when I looked into the symbolism of what I dreamed, seemed to be expressing this exactly. That dream is the catalyst for this post. I've often thought about writing about this, but have had a hard time finding the right words.

You see, I have to be available for my family. Not only do I still have children who are too young to spend a lot of time unattended, but leaving Mark alone for very long.....well not only do I worry the entire time I'm away, but he himself seems to be insecure about it since last March.

I am a caregiver. A friend of mine described me as such recently and I was a little surprised. Hadn't thought about it that way before.

I don't mean to sound like some kind of martyr. That's not what I'm trying to say. I do get time alone, I do get to take care of myself (now) and do some fun things.

It's just....staying wrapped up in this cocoon is limiting, I guess. And it's not just the people who need me, but also my vision.

I feel like I try to take a step in whatever direction but am halted by some circumstance. And they are often things I can't do anything about. It can be very frustrating to feel thwarted all the time.

Lack of choice and lack of control. Two things people rail against so much in life. I fight not to let these things get to me. To work around them and make the best of each day.

And like I said, for the most part I am OK. I am used to it, have done and will continue to adapt. I have plenty to be happy about.

But if someone wants me to see an ophthalmologist and have my eyes dilated for the first time in 10 years, spend an hour in therapy, meet with my daughter's counselor and teachers AND go to a Girl Scout meeting all in one day....?

Ain't gonna happen.


Update: I posted a little more about this HERE.

Linked up with Pour Your Heart Out.

Kid Gloves

I feel lately like when I say something about the trauma I've been through people feel they need to console me in some way.

I don't know if they mean to make me think they think I'm weak, but that's often what I feel.

Like I have FRAGILE: Handle With Care stamped across my forehead.

I suppose I am kind of fragile.

But dangit, It makes me feel like I shouldn't say anything at all. It makes me feel like everyone is waiting for me to crack.

To become the puddle I've so long been fearing I'd turn into.

The puddle that I'm actually learning to not be afraid of.

But now it feels like everyone else is afraid of it.

Oh my god, Jen's just gotta lose it eventually!

We should walk on eggshells around her; handle her with kid gloves because she might crack.

I feel like my friends have stopped sharing their lives with me, even holding me at arm's length. Like because I go through some hard things that I couldn't possibly still care about their lives.

I don't know if that's the truth. I just know that's how it feels to me.

It feels lonely.

Sometimes when I'm talking to someone they'll complain about some aspect of their life and then stop themselves and say something like, "Oh but that's not anything like what you deal with....".

So? My troubles are mine and your troubles are yours and it's all subjective anyway.

I don't corner the market on pain. And I would never presume to.

Shouldn't we all just be there for each other?

Is it because I've finally sought out counseling? But that is what will help me be stronger.

And everyone says I should, that I need it and it's good for me.

Yet.....

So I'm confused. I am confused about what people are trying to do where I'm concerned.

Is it support? But it feels more like......not being given any credit.

I don't know. Like I said, it's confusing.

It's all making me feel sort of dumb.

And I don't know what to do with that.


Linked with Pour Your Heart Out.

Tainted Christmas

source

Is it just me or are others feeling like the joy is being sapped out of Christmas this year?

It feels to me like there are several dark clouds hanging over what is supposed to be the most magical time of year.

So much bad news lately.....a devastating hurricane, a supposed financial crisis and the most horrific of tragedies, a mass murdering of children.

There are also my personal struggles. My husband's struggles.

And it might all be for naught because the freaking end of the world is looming!

In all seriousness, these things are hanging over my head and dampening my spirits.

But I have children and so I forge ahead, trying to make Christmas as special for them as I can.

I may or may not also be trying to drag my husband kicking and screaming into some happy, desperately trying to distract him from what hangs over his head.

It's exhausting. I'm tired.

I love Christmas, for all the little, and big, reasons for the season. I love presents, lights, treats, carols, ornaments, cards, family, the Baby Jesus.....

But.....I hate to admit it....I didn't want to admit it.....this year is kind of hard.

If I can help it, my kids will not feel any of this. They will have a Christmas just like any other. Oh I am so grateful for them!

How do I shed even just some of this weight? How do I turn off my heart to the grief and worry all around?

Maybe this is just how I feel today. Perhaps as each day draws closer to Christmas things will start to feel better.....

He Struggles Too

This is my blog, named after me. This is where I write about life from my perspective.

My feelings, thoughts, revelations and struggles.

Also the light-hearted, fun, whimsical stuff.

But the meat of of it all is the REAL, somewhat intense stuff I share. That I NEED to express lest it bore a hole into my soul.

I talk about my husband Mark a lot. That is because he is chronically ill and everything that entails is difficult and unique, and talking about what we go through is therapeutic for me, and might help others.

What I have either failed to see for so long, or been in denial about, is that Mark has his own set of struggles. His own angst, fears, worries and trauma.

Mark is a man, so it can be very hard to see it. Men are not known for wearing their hearts on their sleeves. They are not known for being able to express themselves and their emotions.

Males are taught to suck it up, to be tough, not to cry, to hold it together. For as much as many women say they want a "sensitive" man, I've found that it can actually be disconcerting when a man cries. If we're really honest, we want them to be the tough ones, the rocks.

Mark has always been a "trooper". Positive and upbeat, a believer in "this too shall pass" and "they haven't found a way to kill me yet". He makes ER visits somehow fun. Despite his many health problems, Mark has always been able to make light, to find the funny, live in the moment and focus on the good.

There comes a point, however, when even a man can't "just hold it together" anymore, when he needs to express some shit too.

Since last March when Mark experienced arrhythmia and we thought he might be dying, the two of us have had some very frank and HARD talks. Talks during which I try to shut up about my own feelings a little bit, instead trying to draw him out. He really tries not to let me, but I stay quiet because I know he'll fill the silence. He often thinks what's bothering him is some inconsequential thing, but it turns out to really boil down to his health and mortality. Every fucking thing comes back to that!

Mark doubts that he is enough man because his body gives him such a hard time. He thinks he should be doing something more for the kids. He worries he's a burden. He wonders if it's worth it and he wonders about the afterlife. He wants to know what it's like after we die because he's scared.

I sit and listen to these things, my heart breaking. I reassure him that WE LOVE HIM WITH ALL OUR HEARTS, the kids are fine, he does enough and that I feel pretty certain he doesn't need to worry about what will happen to him after he dies.

It's all the truth. I think it helps some. But I don't really know. If these things needle at him even half as much as my crap needles at me....

All I can go on is what I see and feel. It comes and goes. Mostly comes. I think about some aspect of all of this every single day. I'm sure Mark does too.

It's hard. It sucks. It sucks hard.

Life itself doesn't suck and that is what we both cling to. We continue to make light, to find the funny, live in the moment and focus on the good. We laugh at each other and giggle with our kids. Shitty thoughts come and we will them away.

I implore Mark to not let the bad stuff win. We can't let it win.

I Love These Ladies

I have somehow managed to make some pretty amazing friends in my life. I have a BFF who has known and loved me since we were in high school together. Ever since, we have maintained a strong long-distance relationship.

I made a very special friend when I moved to the Bay Area. Someone who has gone through many of the same things I have, who will probably always understand a good deal of what it's like to be me.

Then there are the women who have taken pieces of my heart over the last 9 years. We started out having only motherhood and marriage in common. As the years have progressed we have bonded over so many other things.

We've been with each other through births, deaths, medical problems, anxiety, depression, holidays, weddings, birthdays, buying homes, changing jobs....LIFE. We're witnessing each other's children growing up, comparing notes and horror stories. They make me a better mother.

These women who have become constants in my life are so important to me. They have their own little spaces in my heart, and always will have.

I cannot tell you how amazing it was to have them by my side -- literally -- when I gave birth to AJ.  The two times Mark has nearly died, they were right there, stuck to me, making sure I was taken care of, hard-pressed to leave when they had to. Some of the most touching things they've done have involved my children, being there for them so I knew they were in good, loving hands.

There's all the big deal, important life stuff that makes us friends, but there's also a lot of FUN. They are crazy gals with great senses of humor and sass.

We have been doing Wine Club Wednesdays for the past few months. We had an 80s night last week in honor of "Rock of Ages" coming out on video. Also, we're all at some point in our 30s, so we have some fond memories....

I'm right in the middle - see how much they love me?

Desperately Seeking.....Something?

Sportin' the blue eye shadow!

What can I say? Her ass was sticking out!

Whoa, this is heavy.

Legwarmers galore!

Oh yeah, we had wine!

Good friends are there for the serious stuff....and for the serious fun!

When I'm with my friends I feel loved and accepted. I feel like they were meant to be in my life every bit as much as my husband. I trust them. I adore them.

Life seems to have gotten quite a bit busier lately, but I hope they know -- really know -- how very much I love them, and that I feel so privileged that they care for me.

What I don't want for Christmas this year

Haha!

Can I say some things without it sounding awful? Will I sound rude or ungrateful?

Anyone who reads my blog should know better.

There are a kabillion things I can think of that I want for Christmas, but there are also a few things I don't want. They can be kind of hard to say, however, because they could offend someone.

Such as....

I don't want Christmas dinner. I know my husband loves making it. And it's always delicious. And of course I don't hate it. But.....it's just all this work that I have to clean up and Christmas itself is a lot of work and....why can't we just chill?

Luckily, with a little coaching on just the right language to use from a friend, I managed to talk Mark into doing our big meal on Christmas Eve instead. I had to be very careful how I presented the idea to him because cooking for people is a big way Mark shows his love. I brought it up last year and it was like I stuck a knife in his heart.

I don't want to be asked what I want for Christmas. Of course I don't mind the desire to give me a gift. Who would? There's stuff I want! The thing is....if you feel close enough to me to want to give me a gift, shouldn't you be able to think of something I'd like? Because when you ask me what I want, it makes me feel like I'm asking you to give me something. And then I feel greedy (I already feel bad enough for specifically asking my friend Jessica to make me a knitted purse). I know that's not your intention, but it still feels that way.

I really think we should only ask kids what they want. Because  rattling off their little list is fun for them. Thinking of something to give someone shouldn't be that hard. All you have to do is think about what interests them. Do they have any hobbies? What do they do every day? Think about their home. If you're still stumped, gift cards are awesome!

My BFF is most excellent at taking note of things I say in email conversations with her and using those tidbits to come up with gifts I always like.

I don't want it to just rain. Is it really too much to ask for a white Christmas? I'm talking to you, Mother Nature.

I don't want my husband to have any new medical problems. Christmas Day 2008 he had his first heart attack. Christmas 2010 he was just recovered after bypass surgery. Only days before Christmas last year he had to have an infected chest wire from his bypass removed. In fact, I'll be hard-pressed not to be holding my breath as Christmas approaches, I think.

I don't want to be scolded for not phoning family members on Christmas Day. This I really resent. Why should it matter one iota who calls whom on a holiday? Does it specifically have to be children calling parents? Why can't it be the other way around, as long as we connect somehow? AND, if I remind my husband to call his family, should I be lectured on the insensitivity of it all when he forgets? I think not.

What you're saying by expecting ME to be the one who calls is that you're too stubborn to pick up the phone yourself. We have kids to pay attention to on Christmas. There are gifts to open, wrapping to clean up and toys to pry out of their packages and make work. Somewhere in there we also need to eat and take a breath. Doesn't mean I don't want to talk to you and wouldn't love to wish you a Merry Christmas. I just may very well forget to be the one to make the call.

Really, the older I get, the more I just want a peaceful, happy day during which I can do whatever I want and nothing I don't. I want to watch my children delight in their new treasures, sip on drinks, nibble on treats, give lots of hugs and I love yous and call it good.

Is there anything you DON'T want for Christmas? Is there anything you feel obligated to do, but really don't want to?

Watching Parenthood

The TV show Parenthood is killing me right now.

Like bawling my eyes out just about every time Adam and Kristina are in a scene, killing me.

If you don't watch this show, it is about the Braverman family, consisting of the parents/grandparents, their four kids and their spouses, and the four kids' children. The oldest of the four, Adam, is married to Kristina and they have three children.

This season, Kristina is going through breast cancer. They are portraying Adam and Kristina's experience in just about the most REAL way I have ever seen on television. Because it's so true to life, it's hitting me hard.

Mark points out that he doesn't have cancer. I point right back that it doesn't flippin' matter. Major health problems are major health problems. I just KNOW how it FEELS.

This couple reminds me so much of me and Mark. The feelings that are coming up for them are the same feelings we often have or have had. The episode that aired last week hit so close to home.

In one scene Kristina calls Adam and complains about having his mother there helping her. But it's not really about how her MIL is helping so much as she needs the help in the first place. She's just angry that she can't do everything herself right now. You see Adam on the other end of the phone just listening to her. All he says is I'm sorry and I love you. Because that's all he can say.

In another scene Adam's brother Crosby takes him out for a beer. Adam tells Crosby about how a neighbor came up to him the other day and said something like "God doesn't give you more than you can handle". Adam then says to Crosby, "Like that helps me watch my wife suffer!"

Cut to me, sitting on my couch, doing the ugly cry.

Even now, I'm getting teary writing about it.

People mean well. They want to help. They want to do or say SOMETHING that will somehow lift the burden from you even just for a moment. I get that and it's so nice. Believe me, those dealing with health problems do appreciate the effort.

But sometimes there just isn't anything people going through things like this need to hear besides, "I'm sorry" and "I love you". A lot of times, that's enough.

The person going through it doesn't want to be treated differently, and the person who loves them just needs to know you're there.

Being the spouse of someone with health problems brings this show so much closer to my heart. Having lost a friend to breast cancer does too. Watching it hurts right now. But I have to keep watching. Somehow it's....cathartic or something. It's identifiable. And it's being very well done.

So I guess every Tuesday night for the foreseeable future I will clutch a pillow and a tissue, nodding knowingly, and crying along with Adam and Kristina.


This is one of the best scenes so far.

SAHM vs. Homemaker

There is a difference between being a stay-at-home mom and a homemaker.

At least, there is for me.

I did not choose to stay home for my kids because I wanted to be a domestic goddess.

I chose to stay home because I did not have a job that payed enough to justify putting my child in day care. I would have been working just to pay for child care. But beyond that, I've always felt like my biggest calling in life was to be a mom. I am not career-driven.

However, this does not mean that I am inherently inclined to domesticity. I take CARE of things, not necessarily make sure they're squeaky clean, folded neatly and smelling fresh.

In fact, when I got my first apartment, I pretty much only did chores when I HAD to. Mark had to coax me, and even teach me, some things (especially cooking).

It's not that my parents didn't teach me how to keep house. They totally did. That was the problem. I had LOTS of chores growing up, so by the time I was an adult and didn't have to do them for my parents, I didn't want to do them for myself.

I was all, I'm the boss of me now, bitches!

Slowly over the years I got better. I learned that doing the dishes after dinner is a good thing and keeping up on laundry is far less overwhelming than letting it go for weeks. When Camryn was born, keeping the floors clean for her sweet little crawling baby self became important to me.

Still, I've never kept an immaculate house. That, my friends, is a LOT of work! It kills my back to scrub the tub and dusting is like, my most loathed chore. My step-mother had a zillion knick-knacks so I had to move each one to dust and I HATED it. To this day I am not a big fan of knick-knacks.

If I'm being completely honest, which I always try to do here, I don't SEE a lot of the dirty. Out of sight, out of mind. That is, until it gets bad enough for me to see. So that should mean I do regular maintenance, right? Yeah, totally logical. Yet, no.

Well, I DO do regular maintenance. My house is almost always presentable. But there's a lot I let go. And I kick myself for it because a really clean house would be nice. But on the other hand, it's so frustrating because it won't stay clean for more than 5 minutes!

It truly is a never-ending, and mostly LOSING, battle.

I also want balance in my daily life. A balance of have to and want to. I mean, there are more important things in life than cleaning. If a friend calls me up and asks if I want to go shopping with her, you'd better be damn sure I'm gonna say yes to my friend and put the chores off.

I want to take care of chores and responsibilities, AND have time for more enjoyable things.

I prioritize and I balance. So dusting my picture frames isn't on the list of priorities for months at a time. So what? I keep up on the cat box, vacuuming, dishes and laundry ALL THE TIME. I try to keep the house as de-cluttered as I can. I yell at everybody about their damn socks all other the place!

It's good enough.

That said, steam cleaning the carpet is on the to-do list RIGHT NOW. So there.

PS: If anyone ever came to visit I'd clean for them too!

I am not selfish.

We women love and nurture and care. It's part of our inherent nature.

Not that men don't. But there is a clear difference. In my 38 1/2 years on this planet I've noticed this fact: women carry an abundance of guilt, where men do not. Men have no problem taking care of their own needs without feeling guilty about it. I'm pretty sure that all too often sometimes we women resent them for it.

Mothers love and nurture and care. For others. Notsomuch for ourselves.

The simple act of getting a haircut can feel like an indulgence.

At night after the kids are tucked into bed, we pull out our hidden stashes of chocolate, grab a glass of red wine and tweet or facebook that we're enjoying them and do not feel guilty about it, dammit!

Yet we still do. Deep down.

Guilt is the bane of our existence.

We rationalize that we're "giving up" our own needs for the needs of the "greater good", which makes us feel like we're doing the right thing, not being selfish. Of course often financial concerns require prioritizing the needs of the family. Believe me, I know this well.

BUT, and it's a big BUT, the things that don't cost money, shouldn't have to be put on the back-burner.

Things like alone time, hot baths, getting out for a walk to clear your head, taking a nap, not doing the dishes just one freaking day, letting your kids eat cereal for dinner once in awhile, read a book, do a craft or taking some time to chat with a girlfriend.

__________

I've come to what I now believe is one of the so-called "change of life" milestones: when all your children are in full-time school. Granted, this may not affect working moms as much as those who stay at home.....although....just the savings on day care must be fantastic.....

I don't think I'm being too dramatic when I say this has been huge for me. In good ways and bad. or rather, positives and negatives. I shall focus on the positives for the purpose of this post.

It is now my time to become fully ME. The title of my blog has never been more apropos. Now is the time when I can have the best of both worlds. I can, dare I say, have my cake and eat it to.

I will always be a mother. I am still a wife. I utterly adore my family. they will always come first in my heart. I already feel like a better mom. I look forward to my kids coming home each day and show them more patience.

Now though, I have some freedom to explore the other parts of me.....wait for it.....without feeling like it's selfish.

To take better care of my health, both physical and mental. To keep plugging along this blogging journey and sift through the possibilities therein. To be creative. To maybe figure-out-how-to-get-some-new-glasses-especially-since-one-of-my-nose-pieces-just-broke-off. To feel like cooking more (I already do). To maybe become a little more independent. And for gosh sakes, to possibly RELAX a little...??

It's not selfish. It's fair. I'm not selfish. It's my turn.

Beginning Therapy

I've held out long enough. Been stubborn stoic long enough.

It's time to admit that I need professional help.

I guess.

__________

Do I have to?

::balls up fists and stomps foot::

I should be strong enough to handle my life, dammit! I'm not the only person in the world with problems. I'm not the only one carrying a heavy load.

I deal. I cope. I cry and laugh. I find the good and positive amidst the crap.

I get a little bit stronger with each passing crisis.

Or do I?

__________

Maybe I get stronger with each crisis, but they break me a little too. Like one step forward, two steps back.....

I have diagnosed myself with PTSD and anxiety. I don't know anyone who would disagree with those presumptions. I have flashbacks to the nights Mark's heart stopped, and my breathing catches and tears sting my eyes. What is minor to someone else is difficult for me because my emotions are  constantly raw and at the surface.

I think, time will heal. It does some, but not entirely. The nerves and fear are still there.

I'm strong yet sensitive. Courageous yet afraid. Positive yet cynical. I am a walking contradiction.

The contradictions are hard to reconcile.

It's time for me to accept some help figuring all this out. As much as my friends and family love me and blogging is free therapy, neither holds the understanding I long for.

I'm not sure why I find this so hard to do. I have pushed and pushed the idea of therapy away for a  long time. I do know I worry it will only serve to muddy the waters more.

But it's my children, although they don't know it, who are inspiring me to give in. If and when we lose their dad, I will need all the help I can get to be everything they need me to be.

__________

Tomorrow.

Not like Scarlett O'Hara's "I'll think about that tomorrow", although I admit I have done plenty of that.

No. I will begin seeing a therapist first thing tomorrow morning.

Let's be honest, shall we?

Last week I wrote a post about my stupid PTSD and anxiety. Again. For the umpteenth time.

In the days following my accidental publishing of said post, I did a lot of thinking.

A. Lot. Of. Thinking.

And I've come to a conclusion:

You cannot be 100% open and honest with another human being.

You might be able to be 99% open and honest with ONE person in your life. But the rest? Notsomuch.

And you still have to hold back 1% even from that person.

Because here's the thing:

There are simply things in life, things we feel and things we think, that we have to hold all on our own.

This is apparently something that is a Life Lesson for me. I have not been understanding of this thus far.

I don't think I'm being cynical. Cynicism doesn't look good on me.

Hi, does this cynicism make my butt look big?

Seriously, though. We love, we make connections, we spend time and "do life together". But at the end of the day, it's all you. It's you with your thoughts and feelings and struggles.

My husband is my person who can handle my 99%. I can express just about anything to Mark and know that he will, on some level, be understanding and loving.

The first biggest thing that makes me sad when I think of losing him to his illness is how it will affect our children. The second biggest thing that makes me sad is, for me, the loss of my person. If I lose Mark, I lose someone who gets me like no other.

It scares the hell out of me.

I've heard/seen/read (probably all of the above) that all human beings desire validation. For someone they turn to to say they hear you, they sympathize/empathize/understand/whatever.

That we're not alone in this big crazy world.

How any one of us could possibly feel alone on a planet with 7 billion other souls is beyond me! But it happens. We can feel isolated, like no one sees us.

And, I guess, that is something we have to carry sometimes. Sometimes another person can't help you carry your load, may even be sick of your load. It might feel like everyone is a bit of a "fair weather friend".

I'm thinking this is where that 1% that's all you comes in.

I mean, for what it's worth, this seems to be what this little emotional breakdown I've just had has shown me.

I must accept that I have to carry some of my shit on my own.

And I want to be proud of my ability to carry it, rather than feel like it's my Achilles heel.

Do you get what I'm saying?

Agree or Disagree?

Coping Mechanisms

Are you OK?

I have no idea how many times EACH DAY I ask my husband that question.

But I know it's a lot.

While he's still sleeping (if I think he's breathing funny).

Mark.....are you OK?

Shortly after he gets up.

How are you, Honey?

If he starts yawning a lot or can't finish a sentence which could mean his blood sugar is getting low.

Do you need to eat?

When he grunts, groans or moans.

Are you OK??

__________

I worry about Mark. So much.

It's not as if I don't have ample reason to worry. The fact that his heart stopped 6 times in 2 years is enough. Not to mention diabetes and dialysis.

So you can understand why I might not jump for joy when we get a little bit of good news. I may think "well that's good", but I don't feel all that much relief.

We recently found out that Mark's heart pump function has improved since his arrhythmia trauma last March. At that time it was functioning at only 25%, but now it is up to 45%.

This is good news and I spread it, because I know the people who care about us want to know these updates.

On our family Facebook page:

Which I also shared to my personal page. I then posted on my blog fan page where it got 13 likes and a couple of comments. I tweeted and got a few excited replies.

But do you see above how I merely stated the results? No expressions of excitement, no !!! or :-).

It's because there's just a lot to factor in. Sure, this is a bit of good news, but.....

The thing is, too much has happened. Mark has too many health problems that pose various threats to his stability for me to naively celebrate ONE good test result.

This does nothing to reassure me of how much longer my husband will live. How much longer he can push back against all that is trying its damnedest to shove him to the ground.

Mark is an amazing and inspirational testament to the strength of the human spirit!

But....

So sue me if I can't be excited that his heart pump is stronger.. I have to look at the whole picture. I have to keep my head out of the clouds.

I have to be only cautiously optimistic. It's a coping mechanism.

I fear it may come off as cold and callous. That is the opposite of what I really feel. In fact, I feel so much, that if I don't employ a way to deal, I'll absolutely end up a puddle on the floor.

Maybe what some see as cold or callous, is actually strength.

Strength and self-preservation. Because watching someone you love so much suffer with health problems, as well as live with the fear of losing them, hurts. It hurts bad.

There is a constant battle going on inside me to find a balance between the stress and fear on one hand, and the gratitude and joy that my husband is still with us on the other.

So I feel and process. I deal and find gratitude. I self-preserve and I get stronger.

Or it's really just fear and denial. I honestly don't know which. Could be both or all.

All I know is I have my ways of coping. Right, wrong or indifferent....

Stupid PTSD or Grief or WTF-Ever!

I've been feeling kind of angry and cynical lately.

But I don't want to admit it. I don't know if I want anyone to actually see that side of me.

Everyone says such wonderful things about how I handle the struggles in my life. And I feel so proud that I'm able to be that kind of person.

It makes me angry that I still get angry, if that makes any sense at all.

I remember the night of Mark's bypass when his heart stopped the first time. After going in to see him, I emerged from his room and walked directly into my friend's arms. She held me as I began to cry. But then I pulled away from her, balled up my fists and stamped my foot in anger.

I didn't fucking want to be crying! I didn't want to feel afraid. I didn't want to be a mess.

I have to be strong.

I don't want to get lost in feelings of despair and hopelessness. What good does that do? Whom will that serve? There's nothing to be gained by wallowing.

But Goddammit! I also don't want my husband to be sick, and I sure as hell don't want him to die!

I love being married. I don't want to think about being a widow. I don't want to think about losing my very best friend and I don't want to think about being a single parent.

I do think about those things. A lot. Too much.

And if one Goddamn person makes any stupid judgments about how I should have known these things were possible or maybe we shouldn't have had kids, I will punch them in the face!

Because that is pure bullshit. No one should go through life not grabbing onto the things they want, their heart's desires, for fear of the maybes and what-ifs.

That is not a life well lived.

My cynicism comes out when someone very sweetly and innocently says something like, "Praying it will be smooth sailing from here on out." I think, that's nice, but not likely. Yes, we experience calmer waters, lulls in the chaos, but there is always something else on the horizon.

And I just can't, even for one minute, hope that that's not true. I'm too practical.

There is a battle going on inside my head right now between the part that is grounded, positive and grateful, and the part that is scared, angry and tired.

I'm so tired. But you can't take a break from chronic illness.

My nerves are raw and frayed.

I'm hardly laughing.

::

And then I start to get fed up with all the above and somehow....some miracle happens where I can feel my feelings starting to shift. Something that brings me back to the NOW. And I say, "All that there? That's the bullshit, and it's robbing me of my joy."

But it takes a lot of work on a DAILY basis to do that. It takes effort to push away the scary thoughts all the time.

And so I'm still tired.

I suppose that probably won't change.

Linked up with Pour Your Heart Out and Yeah Write.