Category Archives: parenting

parenting

The end of the year and an end of an era.

She’s dead.

My mother.

It still doesn’t feel real even as I type this. It still feels like she’s a phone call away and I’m just “taking a break” from the crazy. But it’s not a break. It’s permanent. There are no more chances at resolution. No more arguments. No more toxic remarks to tear down my ego. No more criticisms. But no more hugs. No more beautiful blue eyes that sometimes, for a moment, said I love you. I am, at once, in shock, relieved, and devastated.

She was my mother. And, at one time, my world revolved around her. There was a time, when I was young, that I wouldn’t want to leave her side for fear of her dying. I knew that she was sick. That it was possible. And the thought was my greatest fear. To lose her love was to lose everything. I would be left alone with the rage that was and is my father. He would have nothing to stop him from beating me…from destroying me. I was dependent on her. In comparison, she was loving and soft. She didn’t yell. She didn’t hit. It wasn’t till much later that I would realize that you can destroy something much greater without raising your voice. You can wound someone without a touch. She was a Trojan horse filled with the kind of hurtful comments that become the little voice in the back of your mind. The awful critical demon that makes you double-check every choice and read between every line. The one that tells you that compliments aren’t real and that you aren’t worthy of the love given freely around you. She wasn’t nice. But she wasn’t obvious either.

And now she’s gone…on the tailwinds of a tempest that she created in the last months of her life. Cruel words were thrown freely, cuss words vomited up toward me in front of my four-year old son, paranoia and delusions were her last companions. It’s like she imploded… all the lies and toxic waste that had begun to eat her alive over the last decade seemed to engulf her. It made her crazy. No matter what I did…how much love I tried to show her, she was convinced that I was trying to keep her down. She saw deceit in my truths and agenda in my gifts. She was forced to a mirror and it was the last image she ever saw.

The last time I saw her alive was the Friday before she died. It was the day after Halloween and we were coming to see her and show her pictures of Trick or Treating. She was in a nursing home…trying to rehab her way home and she was getting much better. But she had news that she was sure I was going to destroy and she was ready to strike out if I didn’t say what she wanted to hear. “I’m going home on Tuesday!” She was so excited that her body vibrated. I was not as excited.

“What do you mean, you are going home? What’s the news?”

“They said I’m better…that I’m doing fantastic. Tuesday, they are getting together to discuss the details of my release. Maybe we can do dinner out that night!” My mom was almost manic.

I frowned and that was all it took.  A dark cloud formed over her head. “Did you tell them the truth this time?” It was only a couple of weeks out since the last time this happened…she had lied so hard it had been frightening. Telling the doctors, the nurses, and anyone else that would listen at the hospital that she had my aunt and I to take care of her 24/7 and that she was totally ready and able to care for herself. No mention that both my aunt and I weren’t speaking to each other, that I have a four-year old son to take care of and a pain condition that stops me from doing even the basics. No mention of the dog and cat she was responsible for that she couldn’t take care of. No mention of the stairs and tiny hall that would be impassable by wheelchair. It had been a nightmare as I struggled to alert the right people before she was discharged. I mentally prepared to do it again…and silently cursed the administration for not talking to me first before giving her this hope.

“I knew you would ruin this.” She scowled hard at me and I unconsciously hugged my son tighter as I prepared for her rage.

“Mom, I’m trying to help you….not ruin things. I want you to come home and stay home and I know that if you rush it, it won’t happen. I can’t take care of you and my son. I can’t clean two houses. And you can’t afford a 24 hour nurse. It’s not possible.  You aren’t even strong enough to go to the bathroom by yourself. You can’t stand for more than a couple of minutes and your house is not wheelchair accessible. It’s a bad time until you are stronger.”

“I would do it for you if it was the other way around.” She seethed with anger…

“No, you wouldn’t. You wouldn’t even come up to hug me when you were well and I was pretty sure that I had a tumor in my brain!” I kept my voice even and soft for my son’s sake. Almost sing-song. I was suddenly glad that he was engrossed in the iPad.

We glared at each other. “Go away!” She suddenly was crying.

I switched my words to soothing, comforting tones. I told her it wouldn’t be long. That she was getting stronger everyday. That she just needed to work the program a couple of more weeks and then we could split the work with a social worker that we could afford. She would be able to stay home and not make a quick return to the hospital…my biggest fear being that she would fall on my watch as I was unable to physically lift her or help her move. How would I bathe her? How would I help her on and off the toilet?  And if I’m honest, I will admit that I wasn’t happy at the thought of being around her frequent and sudden fits of rage. Especially since my son would have to be with me. She could be so cruel and jealous of him. I didn’t want him to see her like that on a daily basis. His well-being had to come first.

“I said, go the fuck away! You just want to keep me down. You have the control and you just are loving this, aren’t you?” Her mania was now mounting with rage.

“Watch your mouth, mother…little ears are listening and you are being mean. Of course I don’t want you here. This is my nightmare having to see you suffer and struggle all the while completely stuck trying to do everything in two households. I am spending everyday in the car for hours and the rest on the phone with case workers and hospital staff. This is not convenient or fun for any of us. I love you and want you home where you belong. I would even let you go if I could…if we could, without legal recourse. I believe a person should die where they want and so if you wanted to risk it, I would say sure. But the truth is, if I let you go home, knowing I can’t care for you and you do die, my family can be held responsible for neglect. It’s not something I can risk with my son. We have to do this the right way. I’m sorry. I love you.”

“Go away, I don’t want you here anymore.”

“Don’t say that…you don’t mean that. What if that’s the last words I ever hear from you? Please…”

“I said, go away!” And then she turned her chair and rolled away two feet with her back to us. I stifled a laugh at the absurdity. I was long past taking her shit personally. This was nothing compared to some of the nastiness she had said even a few days before.

We stayed for a few minutes so that I could give the illusion of calm to my son and give her the chance to cool down and change her mind. But she didn’t and so we left. I had him give her a hug and I wrestled with whether I should too. But I really didn’t want to. I was hurt and tired. And so instead I looked at her face for a moment and memorized her eyes. Her beautiful blue eyes….even when they were angry. I kind of knew, for some reason, that this would be the last time I would ever see them. It felt important. But I brushed it off as my usual worrying. And then I took her advice and spent the weekend with my family. It was the first extended break in months. It felt good.

On Tuesday morning, the day that the meeting was going to be held (They had called me later to invite me), I received a call from a frantic nurse. My mother had taken a turn for the worse. I needed to come. I asked if she was dying since I wouldn’t want to bring my son to the hospital to see that. I would need to get someone to watch him. She told me to get someone. My heart freaked and sputtered and then I was dull…numb. This couldn’t be happening. She was almost going home. She had been getting better. She couldn’t be suddenly dying.

I didn’t make it. The doctor called just as my husband got there to go with me. She was already gone (Later, I found out that she had died hours earlier but her pace maker had confused an incompetent nurse into thinking that she had a pulse). My world shifted into black.

My mom. My beautiful mom is gone.

I miss her so much it takes my breath away. And yet I would not be honest if I didn’t admit that I feel relieved. It’s over. It’s been weeks without new wounds. Weeks since I’ve been yelled at. Belittled. And with each moment of relief comes fresh guilt…even though I know it’s normal to feel this way. It still feels wrong.

She was my mother. I loved her deeply…always will. I also hated her deeply but I’m determined to let that go as time passes. To make her death a time of change and new beginnings. To heal and forgive. To let go.

I love you, mommy. I hope you aren’t in pain anymore. I hope you know how much you meant to me. I hope someday to remember only the love we had.

And your beautiful blue eyes.

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The Crisis Mindset

On Thurs, I had just finished getting ready to go out when it happened. Just as I was pulling The Cute out of the bath, I heard a pop and suddenly there was an excruciating pain in my tailbone. Six hours, a shot of dilaudid, and a few X-rays later, I was home and wondering WTF. 

It's been a very long weekend. My husband, though he means well, usually disappears when I'm sick or hurt. I don't really understand it but that's just what happens. He takes The Cute out to a million different places and I spent the day watching tv or playing games on my iPad. But it always needs up with me thinking too much. And that is a bad thing when we are in a place this. We have a thousand decisions needing to be made with no resolution in sight. Questions that have no answers. Where are we going? Where can we live? How can we afford a home? What will I be able to do with my condition? What are we going to do about preschool for The Cute? How can we help my mother (who is slowly deteriorating and will eventually be unable to live on her own) when we can't help ourselves? How is my doctor appointment on Tuesday going to go? Should I even hope that its going to be helpful or should I just expect the same old rejection. 

I am just filled with anxiety and it doesn't help that the accident on Thurs started a flare. I am absolutely exhausted, the pain levels are high, stomach issues abound, it feels like the tropics despite air conditioning, my tongue is full of sores, a dull headache accompanies the fierce eye pain and blurry vision, and I am nauseous. And on top of it all...I have a toddler who has been spoiled all weekend with attention and now doesn't know how to play on his own. I can barely hold my eyes open. 

It didn't help that last night my husband and I got in a disagreement. Because I was left to think so long alone, I suddenly felt lonely, upset, and needing answers about our future. I was angry at his distance. I am frustrated by our position in his family's guest house, and the procrastination we both have been promoting concerning our future. Truth be told, it was a bad idea to talk just then as I was emotionally charged and nothing was really going to fix it. But I just couldn't help myself. I wanted answers. I want to know where we are going. I feel like such a failure. And at times like that, I always seem to try to fix him or us...or someone else. I feel helpless to fix myself, to end the ever present self loathing, and so I want someone to join me. And it ended with him not even wanting to snuggle. Ouch.

When I feel like this, so very tired and so done, everything seems wrong. In fact, I can barely stand to hear myself. I hate the my words, my whining. I'm tired of me. Stop the merry go round, I want off. 

I used to be so hopeful. So fun. I am an artist and a gypsy(not really but I love roaming free). I used to drop everything at a moments notice and run to New York on whim at midnight for a slice of cheesecake. I used to dance the night away at fun, crazy clubs. Wear unusual and crazy clothes. Ponder the workings of the universe. I used to paint all night and sleep away the mornings. I used to meet new people without even trying and they would whisk me away on adventures. Now I'm just a mom. Just a patient. Just an unreliable friend. Just a boring ball and chain. I am a shadow of who I was. When I look in the mirror, I just see a face. No heart. No spirit. A face. No wonder my husband has no interest in me anymore. I'm fading. 

Well, what to do now? How do I fix this? Maybe I don't. Maybe this is what life is like after. After the wedding. After the kid. After the illness. Life after me.

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.