Archive for July, 2010

Devastation

July 28th, 2010

It is 4 o’clock in the morning and it will probably be quite some time later by the time I’m done writing this blog. Why on earth would I be blogging at 4 in the morning and not sleeping? Because my mind is spinning in a whirling dervish of thoughts and my gut is aching. To put it bluntly, I am devastated. And honestly, it is not as terrible as it may sound. This devastation is actually quite a good thing.

Yesterday was the Spintunes round 3 listening party. For those of you who may not be in the know of what is Spintunes, it is a song writing competition. I am one of the judges for this competition. The challenge for round 3 was to write a sad song about a normally happy event: birth. Not only was it to be a sad song, but a real tearjerker. The words “happy” and “birthday” were not to be used.

Once the deadline for each round has passed, I host a listening party in ustream. It is an opportunity for every one to listen to the songs for (mostly) the first time before they are available to the general public for listen and download. And during this listening party, I am on web cam so that people can not only hear me but see me.

I had tweeted a few time prior to this round’s listening party that I was worried about having my cam on. I didn’t want to give away any reactions to this round. I didn’t want to let on in any way if I felt (in the literal sense of the word) that people met the challenge. It totally takes away from the judges not allowed to give any real type of feedback before our rankings and reviews go live. And if the songs did indeed jerk tears out of my eyes, well the jig is up.

For a brief moment, I had contemplated not having my cam on but then decided against it. I thought I would be able to distract my brain enough, through multitasking and throwing in happy songs for breaks, that there would be no emotional responses. I failed miserably at said distraction and broke in front of those who were in attendance. 1 song jerked tears. 1 song broke me. 1 song completely devastated me. It was all I could do to keep it somewhat together and not completely crumple over with emotional pain.

I was very worried about this possibility which became reality. I had a strong feeling that this round would be quite difficult for me to listen to. I had also strongly hoped that every one would fail miserably, leaving me to have to judge from an objective perspective instead of having to include the emotional perspective as well. In my first review, I wrote that if a song elicits an emotional response from me, that is a very good thing.

I have a very difficult time emoting. Strong emotions are quite foreign to me. I never know what to do with them when they happen. But I am always thankful when something aides me in achieving a significant dam-breaking flood of emotion. But I didn’t want to have the emotional break in this round even so it was the point of the challenge. Plus, it was a challenge that I strongly advocated be the way it ended up being.

This doesn’t make sense, does it? Let me see if I can explain this in an adequate way. It may be difficult because the flood of tears will not end and my gut will not stop twisting in knots of pain and sorrow. And if I do not purge, I think I may collapse in a heap on the floor, curl up in the fetal position and tremble with the ferocity of the Big Bang. Honestly, this is not a terrible thing. What I am currently experiencing is actually quite therapeutic. I am quite grateful for it all. Okay… I should explain and hopefully I do not break any rules I am bound by as a judge in the process.

This round hits way too close to home for two reason. I knew people would write (among other topics) songs about either losing their child at birth or about the mom dying during childbirth. I almost lost Kid2. When you are pregnant, you have all types of “what if” thoughts. At least I did. You want your baby to be healthy. You want to have an uneventful pregnancy. You want all of these things and more. But if you are the realistic type, like I am, then you think about the other things just in case. You try your best to mentally prepare yourself for all scenarios… just in case.

Well, there is no such thing as being prepared for it. Nothing can prepare you for that gut wrenching and heart sinking feeling when the doctor informs you there is something wrong with the baby. The bottom falls out of your world. The world become vacuous and fuzzy and speeds up and slows down and it is all you can do to remain calm and not want to die yourself. What you wouldn’t do to insure that your baby lives. Even if that means giving up your own life. Nothing is more important than the life you’ve chosen to grow inside of you. This thing that is technically a parasite, eating away at your resources, becomes your entire Universe.

I knew my children before they were born. They were my sun and my moon from the moment I had confirmation they were growing and developing inside of me. It was a bit of a trial to get pregnant. It was something I wanted more than anything in the world. All of my life I knew my most important job was to be a mom. That was going to be my major role in life. So when I was told there was something wrong with Kid2, I was devastated beyond words. It took every ounce of strength I had to continue through my day to day, doing whatever was needed to guarantee that he would experience his first breath and grow up to be a man.

Part of this involved possible surgery on his brain while he was still in utero. When I was told they may have to do BRAIN SURGERY before he was even born, once again it was all I could do to remain outwardly calm while on the inside I was a hot sick mess. The moment to moment living that I use to get through my Lupus became of the utmost importance for both my mental and emotional survival. Thankfully, over time, the problem in his brain started to correct itself (the problem would take quite a long time to explain. If you’ve read my book then you are familiar with it). We were told that he had a pretty good change of coming through the pregnancy fine. Of course we wouldn’t know for certain until he was born and they did CT scans and closely watched his development as he grew up.

And then came childbirth and he almost didn’t make it. After all the fighting and remaining calm and trying to be optimistic while remaining realistic throughout the pregnancy was almost for nothing. He turned quite frequently while I was in labour causing the cord to wrap around his neck three times. The last 20 minutes of labour and delivery, his heart rate dropped down to 40 beats a minute every time I had a contraction. At that point, my contractions were 2 minutes long and only 20 second apart. So for a good period of time, he was being strangled plus having a heart rate drop down to almost nothing for a significant period of time without time to recover.

When his head emerged from the birth canal, the silence in the room was deafening. I looked to his dad for signs of what was going on. All my doctor told me, in a calm yet very assertive manner, “Whatever you do, Do. Not. Move. Or Push. Until I give you the word.” I read the books. I’ve seen movies. Those are not the words you want to hear. Again, it was all I could do to listen to what he was telling me to do and not panic and kill my baby. Desperately, I searched the room for answers. Desperately, I held on to my own strength. Desperately, I fought so that my baby could breathe. I just wanted him to breathe. Silence. The most painful silence one could ever know.

Finally, I was given the go ahead to push. Only to have to stop again because his collar bone got caught in my pubic bone and my doctor had to do fancy manipulation to get him out without breaking him. Once again in a very calm yet stern fashion, my doctor ordered me to not move until given the go ahead.

These two instances were only moments long but they felt like an eternity. Time stood still. The world around me ceased to exist. All that was left was the pounding of my heart, the screaming in my head and the sick feeling in my stomach, pulsating, threatening to explode at any moment. He was out.

Why wasn’t he crying? WHY IS HE NOT CRYING? WHY IS NOBODY TALKING? SOMEBODY TALK TO ME!! WHAT IS WRONG WITH MY BABY!?! Oh please God, somebody talk to me!! He is my baby, please, please, please, let him live. WHY IS HE NOT CRYING??? Oh God, no…

5 minutes later, after a lot of frantic motions from the doctors and nurses, he cried. It was the most beautiful sound I have ever heard. Someone asked on Twitter tonight, “Can some girl please describe how you feel seeing your baby for the first time? happy? Joy? Victory? I’m not even a father….” My response, “Soul exploding joy. I don’t think it is really all that describable aside from saying that intoxicating feeling of being in love to the power of the speed of light to the power of infinity.” The moment Kid2 finally cried, when he finally took his first breath, it was as if I had taken my first breathe. The moment I knew he was alive, I was alive. I fell in love with him before he was even born and there he was. He was battered and bruised, had awful discolouration as a result of being cyanotic, had Klingon ridges and scratches which remain scars to this day. This made him quite ugly in many ways, but he was also the most beautiful thing I had ever laid eyes upon. He was a miracle.

So yeah… there is that. I don’t think I could properly explain the horror that is almost losing your child. I would have been devastated if he died. Based on my past attempts to prepare myself for the possibility of complications of pregnancy and almost losing a child and failing at said attempt, I don’t think I could ever prepare myself for the loss of my child. I can speculate. I can trick myself into thinking I am prepared for that event. But I do not think you can ever properly prepare yourself for that. And because I came so very close to losing a child I fought for, that I had planned for, I have the utmost empathy for any parent who was not as fortunate. And because of this, this round hits really close to home.

And then there is the whole losing the parent thing. Obviously I am still alive and my children didn’t lose me during childbirth. Their fathers will never have to explain to them those events. Their fathers will never have to remind them from the day they were born how much their mother loved them, even before they took their first breath. But my children do face losing me now. And this kills me.

I’ve written about this before. It is why the movies Stepmom and Finding Neverland leave me a hot sick mess. I don’t even want to begin to imagine what it will be like for them if the complications of Lupus rear their ugly heads and leave them motherless. It is why I wrote my book. So that they will have something, always always, to remember me by. I’ve left them my stories. I’ve left them love letters. I’ve done the things that fathers have to do with their babies when they are left motherless. And it breaks my heart. I’m not saying losing your mother at birth is the same. But it is relatable and as a result, I greatly empathize with both the parent left to tell the stories (I cannot count how many tears were shed as I was leaving a record for my children) and the children without a mother.

I think I needed this cry. I don’t think I have ever fully dealt with the emotions related to Kid2′s birth. I was so busy surviving and getting through the moment, I didn’t take the time to actually let it hit me. If I had done so… well I don’t think it would be good. I don’t know if I will ever fully deal with the emotions surrounding these events. Every time I think about the sadness of it, I feel as if I am doing the wonder and joy of it a disservice. I should be counting my blessings and not dwelling in the sorrow. And of course, that is what I do.

But every now and then, events will take place that bring it all back up to the surface as if it were my current reality. So I have to stop. Remember. Be thankful. All the while, allowing myself to give into the devastation.

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I Think I May Want To Scream Or…

July 11th, 2010

Cry or break something or just collapse into a heap in a dark corner and give up. I’m so bloody frustrated at the moment. I’m also very angry with myself for allowing my current physical state to affect me in such a manner. But the moment by moment is incredibly difficult at the moment and for the first time in a few years, I may actually be afraid. And I have to admit, I hate myself for possibly being afraid.

My Lupus auto-destruct sequence as been activated again. But for the first time in years, it is affecting more than one of my systems simultaneously. It is much easier to distract myself from the added pain levels when it just one part of my body but when it is more than one, I just want to say “FUCK THIS! I am so done with all of it! Time for me to give up the fight and go on the narcotics and prednisone .” And then I feel like a bloody coward. I start to cry and I loathe myself for it. I start to feel even more alone because most people just don’t get it and they give me those looks and words of pity. And it sucks big blue hairy monkey balls.

The auto-destruct sequence started with a sore throat and pounding sinuses. And now my left TM joint is so incredibly swollen that I can barely open my mouth to speak. Eating and drinking is impossible without yelping and tears streaming down my face. I can’t yawn. Last night, I awoke multiple times to the most excruciating pain. When the boys ask me a question or want a conversation, it is all I can do to not say, “Please, just go away” and then I feel like such a terrible parent. And I loathe myself even more.

I’m afraid that will I have to start getting weekly cortisone shots in my jaw again (a 2 inch needle jammed in between joints if FUCKING PAINFUL). I haven’t had to have those done in at least 6 years. I was doing so good despite the fact I haven’t been really well in years and the constant infections. But the cortisone and gold injections were stopped because the NSAIDs,  muscle relaxants, methotrexate and other meds were finally doing their job.

How do I talk to anybody about this in any real way? I can’t even admit to myself right now that I may be afraid and accept it. If I can’t accept my own fear without beating myself up over it, I can’t expect others to accept it and not feel let down. I’m getting to the point once again where I just want to tell every one to go away because I have a strong feeling things are going to get worse before they get better.

I should have seen this coming. The last few weeks, my sleep has been terrible. I had chalked it up to my OCD being in overdrive because I am stressed out with other things as well and it not liking the change in routine. Ever since the boys got out of school 2 weeks ago, each morning I’ve been waking up in a panic thinking I’ve overslept. I had assumed that because I am such a creature of routine and structure and a lot of my life has been disrupted lately, it was my brains way of trying to cope with too many changes at once by not allowing itself to give up yet another routine and constant. Or maybe all these stressful things are what has contributed to my body experiencing thermal nuclear war.

I have been trying to hard to remain optimistic, cheerful, to keep my sense of humour and keep joking around with people but it is getting increasingly difficult. I just want to rage right now. I need it to be okay with people. Correction, I think I need it to be okay with me. I need to give myself permission to be something else other than brave. But I am afraid.

I really want to just scream and rage but I can’t even open my mouth to do that. So maybe I’ll cry instead and find it within me somewhere to forgive myself for this moment of fear and weakness. A moment that if it were anybody else, I would tell them it is okay and understandable and they are entitled to feel that way. I need to give myself the same permissions and messages I give others. I just don’t know if I can face what it would mean to fully surrender and admit the fact that I may be afraid.

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In Which I Tell The Tale Of The Crispy-Fried Child

July 6th, 2010

My mommy heart is breaking right now. And yet, I can’t help but to laugh. I suppose that is what happens when you raise a child who is so overly dramatic. So many things with him are such a production. The way he expresses himself in times of sadness, pain and frustration, are right out of a sitcom. Grand hand gestures, elastic facial expression, quirky bodily movements, exaggerated speech, over the top physicality become his norm. And even so the mommy heart breaks, it is all one can do to not burst out into laughter.

Kid2 got a sunburn today. And not just any sunburn. My poor, pathetic child is a wonderful fiery crimson. It is enough to make the angriest sunset jealous. He came home from a sleepover feeling tired, miserable and in a lot of pain. At first I had no idea until he asked me a question. I could hear the sound of suppressed tears. I asked him what was wrong and was met with a very grumpy and pain-filled, “I’m tired and I have a frikken bad sunburn! OKAY!!” Sheepishly, I responded, “Oh sweetheart… Okay, to stop the burning, what we need to do is…” “I don’t want to hear it! I just want to be left alone! Please…”

I swallowed my instinct to completely mother him. He is so much like me. He is stubborn, strong-willed and becomes cave-dweller when something is bothering him. Like me, he needs to be left alone until he is ready for help and asks for it. So I told him to go do what it is he wants to do and if he wants my help, come and find me.

Shortly thereafter, I found him asleep on the couch. Watching my child with the crimson-coloured-angry-skin sleep was quite saddening. I was tempted to put cold, wet clothes all over him while he slept in order to stop the burning. But heaven forbid I wake the Angry Dragon. So patiently I waited for him to wake up and allow me to fix.

Accompanied by painful cries, he awoke a couple hours later. It was so completely pathetic and terrible. I asked him once more if he’d allow me to help him. He said yes, much to my own relief. I took one of his shirts, ran it under cool water and attempted to put it on him. I may as well have been beating him. The loud yet silent cries which ushered from his mouth were the most unbearable things to hear. Holding back my own tears, I left him alone as he wanted when the torture session was over.

A short while later, hunched over in the doorway, he asked me at what temperature it would be safe for him to have a shower. I gave him the instructions and down the hallway he creeped in an Igor-esque fashion. 45 minutes later he emerged, hair dripping and what I told him should be a damp shirt was leaving a trail of water wherever he went. And this is where the pathetic tale starts to turn oh so comedic but still so very pathetic.

Kid2 (shoulders hunches and pain in his voice): What time did I go to bed last night?

Me (puzzled): I don’t know, hun. You were at a sleepover last night.

Kid2 (half through tears in an over-dramatic fashion): What?!?! You mean… it is still the same day?!?!

Me (a smile trying to crack my face): Yes it is, love.

Kid2 (with the frustration of a 1000 men who have prematurely ejaculated): OH GAAAAWD! (looking up to the sky) WHY?!?! I just want this day to end!

Me (wanting to cry and burst into laughter at the same time): *sigh* Oh sweetheart…

Kid2 (almost fully on the verge of tears): This is the worst day EVER!

His brother had arrived home while he was in the shower. I told him he needs to leave Kid2 alone and not tease him because he has a horrible sunburn and is not in the best of moods. Can you guess how well he took that under advisement?

Kid1: Hey. You realize you are a ginger don’t you? And therefor burn easily? Dude! Why did you take off your shirt?

Kid2 (hands up in the air, through tears and completely exacerbated): GEEZ! I forgot, OKAY! I will NEVER forget again! GAAAAAAWD! Just leave me alone!… This is the worst day ever (collapses into couch face first with hands covering face and sobs)

Is it awful that I can’t help but to giggle over this? Am I a terrible person. I am the type of person who laughs at the most inappropriate and morbid things. I really have a whacked sense of humour. I feel so terrible for him. My heart is breaking over his pain and the fact I don’t have a quick cure to make both the emotional and physical pain he is currently suffering just disappear. But my God, this kid is hilarious even when ill.

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Putting Out The Feelers: Lupus Day Virtual Art Gallery Part Two

July 5th, 2010

This may seem a tad early but it really isn’t. A couple of nights ago, I was asked if I would be doing anything with the World Lupus Day Virtual Art Galley for Lupus month in October. I’ve asked a few people about what they think of this idea and not surprisingly, the answer was a resounding YES!

I think it is a fab idea myself. I had thought about updating the art gallery twice a year instead of once but didn’t think there would be a call for it until I was asked the other night. And as obvious as the answer may be, the reason why I am now asking a bigger audience is because the success of this really does depend on you. Sure I am the one that has to update it and maintain it but without contributors, there is nothing to update and maintain.

How it would work for October is the deadline would be anywhere from now until Oct 29, 2010. I will update the gallery throughout October with submissions given until that point and during the month of, instead of one giant day of updates like with World Lupus Day. World Lupus Day updates will still only occur on the one day in May.

And as before, there will still be a heavy butterfly emphasis as the butterfly is the symbol of Lupus. But I want to make one thing clear, this does not mean you are limited to a butterfly theme. Whatever you choose to create and contribute would be more than appreciated. And thankfully, this time you have a couple months to work on your projects instead of a couple of weeks. I will also make another event on Facebook to help everyone spread the word.

I would like a few more “yes” replies before I start promoting this even further. So if you would be so kind as to give me your feedback in the comments, that would be greatly appreciated. And yet again, I do want to thank you all from the bottom of my heart for the support you have given me throughout all my projects. But most appreciated is the support I have received around this one. Even though I often feel it is a lonely road, I do take comfort knowing I have your support.

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