This poor space of not much happening. The tumbleweeds and cobwebs have been finding their home in this once frequently updated spot. I wish I could fully explain what has been happening. But once the crazy hectic that is my day is over and it time for quiet reflection, communicating with others is the last thing on my mind.

My friends have suffered. My personal blog has been sorely neglected. Once upon a time, I had told myself that I would update this spot at least three times a week. Even if it were just a paragraph or two. But I am the type that does not believe in stories that begin with “once upon a time.” They are filled with grand dreams and desires but contain little reality.

My life continues to take twists and turns that were never envisioned and I find myself sorely unprepared. The last three months have been overflowing with high highs and low lows. I realize I find myself thinking and sharing this often. And no sooner do I think, “things can’t get any more insane and peculiar”, life decides to show me different.

And because I am a person of privacy, a person who keeps the really good things and really bad things close to my chest, because I’m the type who withdrawals frequently to a Fortress of Solitude which later became my Batcave, during these moments, the rest of the world outside of my teeny tiny circle becomes invisible. For me it is a necessity. And if something threatens the inner then the outer starts to collapse. I am the type who needs to feel secure within my nucleus world before I can feel secure in my interactions with the outside forces. And at times, I am feeling as if my core is beginning to fracture. So my energy has been focused on making sure that I remain whole.

It really isn’t all doom and gloom. There have been way more moments of awesome than not. And the not isn’t what I would consider terrible, it just needs a little more support and care. I’ve been needing to focus my energies on the things that fall under the category of “makes a real difference in my life at the end of the day” and allowing the “it is pretty window dressing, neat and cool but at the end of the day, when all is said and done, it doesn’t really change anything” to be ignored.

At times though, I feel as if I am not being perfectly honest with people. And I’m not quite sure what to do there, especially as I’m known for being unfailingly honest and blunt. People ask me how I’m doing and they get the default answer of, “I’m good.” Which isn’t a total lie. Overall, I really am quite swell. Sure my Lupus has been a real pain lately. I’m the worse I have been in years. I’m not as bad as I once was but I haven’t been this beat up in a couple of years. So “I’m good” is a completely valid answer to an extent, as it could be and has been much worse. However, I guess this is my own “Lupus Lie“. I’ve never fully shared the extent of my Lupus until just very recently. And only 1 person has heard the full, unedited truth of the situation.

People ask how the boys are doing. Again, the answer is, “They’re good.” And they are. But they are each going through different things right now. My heart breaks for them. But they fall under the sacred category so only 1 person will hear the entire truth on that situation as well. I had a conversation with Kid2 the other night that nearly devastated me. I suppose I haven’t been doing as fantabulous job as normal masking the pain that I am in lately.

As we were curled up watching a movie together, out of the blue he asked, “Mom… why isn’t there more focus on Lupus fundraising? Why do people care more about Cancer than they do Lupus? Do they not understand Lupus can kill you too? I don’t understand why nobody cares…” And then he went into his quiet place. I considered him for a moment and tried to mask the tears in my eyes and voice, and responded, “I think maybe it is because more people get Cancer than Lupus. Cancer is easier to understand, treat and diagnose than Lupus.” He came back with, “More reason to research Lupus instead of Cancer. They have the answers for Cancer. They don’t for Lupus. I don’t want you to die.” What do you say when your 11 year old says that to you? How do you respond to such adult questions coming from such a young child? How do you cope with something that no child should ever have to think about? I did the only thing I could think of. I gave him a hug and a kiss on the head and told him that I loved him and he is never to forget that.

And then there is my relationship. Despite the fodder, it is doing just fine. We may each be going through different things at the moment and individually may not be doing so brilliantly but we are fine. I suppose people ask because they are concerned. However, my gut reaction is to respond with either “None of your fucking business” or “We are doing horribly. Does that make you happy?” As with my children, this is sacred. So the really important things do not get discussed in public. If I wanted people to know, I’d tell them. But only after clearing what is okay and not okay to talk about with the other person in this relationship. Because after all, we are the ones that are in it. Not the observers who whisper and gossip in dark corners and then fish for information. So again, they get the “We’re okay” because we are even if individually, it isn’t the entire truth. But the whole truth is nobody’s business but our own.

It feels weird even sharing this much. But I am tired. I am feeling like a dartboard caught in the middle of all these different spheres that I use to keep quite separate from each other. Somehow they have managed to meld and collide. My friend life has mixed with my relationship life. My family life has mixed with my friend life. My relationship life has mixed with my family life. What use to be quite distinct worlds that never shall meet have mixed and mingled. What use to be clear and defined boundaries have become a blur, leaving me to build new lines in an effort to keep the core whole and secure.

At the end of the day when I’ve had time to reflect, after being bombarded by “how are things?” emails and messages and feeling like every body is being nosy and not respected my boundaries, I can conclude that they do it because they care. They may not show it in a way that I am comfortable with and instead show it in a way I find quite intrusive but for the most part I can conclude they care. The problem  is (and most would not agree this is a problem), too many people care. And I’m not always sure that they care for the right reasons. My energy is finite at the moment. It only has enough real focus for my inner most relationships: my children, my relationship and myself. Everything else is just window dressing. So instead of answering a million questions about how life is, I blog. Then I just have to say it once and if they honestly wanted to know, if they honestly cared, they will read it and understand.

I also have so much awesome going on right now. Like a lot! And I can’t share that either. SETEC ASTRONOMY (too many secrets). When the time is right, people will know. As I’ve written, things are mostly really good. I have a lot of pretty amazing things going on right now. I’ve been presented with some really cool opportunities as of late. These opportunities may not be paying off monetarily (which seems to be important for a few people in my life) but… well I think people will understand why that does not matter once I am able to share.

I’m blessed. I have solid relationships and a beautiful family. But my core is a little rattled at the moment, leaving my soul hectic and feeling frenzied. In time, I will reach a new state of equilibrium. I just ask that people are patient. I ask that people allow me to come out of this on my own time. The more I feel pushed and pressured into being sociable and “happy Jules”, the more I retreat because I don’t feel as if my needs are being respected. I feel as if people only care about their need for a happy Jules and not my need for space.

Honestly, I am good. I am just in my cave at the moment, taking care of the things that are truly important. When I am ready, when I am done reflecting on my hectic soul, I will emerge once more. I always do. And honest to bob, I think you will all squee with me when I can share the really awesome that is going on at the moment. I just thought I owed it to every one (mostly myself because I needed to get a few things off of my chest and erect some lines) to update this space and disperse with some of the cobwebs.

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.