Monday, August 31, 2009

Time

2 years ago today, an ultrasound tech leaned over my belly and grabbed my hand. She looked into my eyes and said, "If it's bad, is there someone here with you?" And so began my journey into hell.
He wouldn't be born until the next day. And he would never take a breath outside my body.
2 years ago today, my world and my life changed, forever.
2 years ago today, my third child, my second son, a boy we would name Caleb, but who would never answer to it, began his journey into this world, even though he had already left it.
2 years ago today, I tried to prepare myself to meet my child and to tell him good-bye.
2 years ago today, I lay in a hospital closing my eyes to everything, gripping the handrail of the bed as my body contracted and I begged myself, screamed at myself, to wake up from the nightmare.
2 years ago today, I found out I wasn't sleeping and the nightmare was real.
2 years ago today, I met two db moms, they were my nurses and they held my hands as I joined the club.
2 years ago today, I heard the silence on a heart rate monitor and it was deafening.
2 years ago today, still feels like yesterday and I suspect it always will.

Tuesday, August 25, 2009

On my mind

After Cason had his 'adverse event' (that's what the government calls it anyway) I ramped up my research on vaccines, vaccine safety and vaccine necessity. Let me preface this by saying I am not one of those tree hugging, government hating, yahoo's, who thinks all vaccines are the devil and that the medical advances like say, hospital births or vitamins are taking away my civil liberty.
BUT, I do have and have always had, a certain amount of suspect when it comes to the recent onslaught of drugs that have been rapidly approved for general use well before any significant safety testing is done on them. Long before Cason was born I was suspicious of drug companies and their cozy relationship with the FDA and the fat cats over there in that hub of politics known as DC. Way back in the last century in fact, I refused the live polio vaccine for my oldest (they were still giving it back then) and insisted he get all 4 shots in the inactive form. My doctor at the time wholly supported my choice and respected my research. Lo and behold, not too long after that the government 'decided' that indeed, shooting live polio into 2 and 4 month old babies wasn't good for them after all and the protocol was changed to the one I had insisted on for my son.
Flash forward to Cason and his shots. I still declined several of the shots 'recommended' for babies, even before his 'adverse event'. He hasn't had Hep B, (because he isn't an iv drug user, he isn't sexually active and I am negative for it myself which accounts for something like 99.9% of transmission of that disease), he didn't get the new version of the rotavirus(the last one was pulled after inadequate testing resulted in the discovery of intesussception or collapsing intestines as a fairly common side effect of that shot in the general population of kids) and I had a whole schedule worked out for how the remaining shots were going to be given but obviously that's changed now. My concern then was (1) this trend of over vaccinating and (2) the sheer speed at which these vaccines are pushed onto the market where the real 'testing' that goes on is on the general public (see the rota virus above for example) and then the drugs are pulled after the bad shit has happened to many, many kids or adults depending on the drug and on how quickly, cough, cough, the government and the drug companies move to pull a drug off the shelf. My general rule of thumb is that if a drug hasn't been on the open market for at least 5 years, without reported or questioned negative side effects, we don't take it. Which is why Cason only got the shots he got. All had been on the market for decades and had proved to be 'safe' but did have some RARE known side effects which to be perfectly honest I just assumed wouldn't happen to us. I was wrong. Almost deadly wrong.
While we still don't know what happened to Cason or why it happened and may never know depending on what we decide to do as far as testing on him to look for an allergy, at this point he is no longer a candidate for any vaccines. This does not make me happy. I don't want him to get mumps or rubella or whooping cough and die from a disease that was/is preventable. It's not a good place to be this fence I am walking on, believe me.
Sadly, my research has led me to another family who lost their beautiful 4 month old son just hours after he received his vaccines. The same ones Cason got. I can not tell you how many tears I have cried for that family. I have corresponded with the mom who has been kind enough to share the intimate details of the last hours of her son's life with me and my heart literally shattered reading her words. She and her husband did everything right for their child, they were there with him the whole time and the doctors could not save him. It has been decided by the government that indeed the vaccines did kill him. They will be compensated for the loss of their son, but really what $ amount can ever make it right or make them whole? There isn't any amount on earth that can fix them or bring back their healthy, beautiful boy. They have been told not to vaccinate any future children they might have or to at least wait until the child(ren) are 5 years of age. But fate, that bitch, has not let them get pregnant again since losing their son. It is just wrong, so wrong.
My quest has new meaning, my research, new drive. The only difference is that now you may hear about it here. I think we all need to be informed and to have all the facts before us when we make decisions that can literally have life or death consequences for ourselves and for our children. I am not planning on getting on my soapbox for too long but I do plan on sharing information that I think is relevant and worth hearing about.
And I welcome your feedback, no matter where you are on the issue. Just be polite and be informed, that's all I ask.
With the Swine Flu, shudder, shudder, coming our way, I especially want to make the point that the government is fast tracking UNTESTED vaccines for mass vaccinations of children this fall. Oddly, if you do the research the Swine Flu is no more dangerous than other types of flu, my oldest had it this summer, eek!, and yet the media would have you believe it was the second coming of Christ or the plague or some other terror, born out of a pharmaceutical companies profit ridden dreams.
Here's a link http://vaccineawakening.blogspot.com/2009/08/gardasil-swine-flu-vaccines.html
with some interesting information on that topic and on the whole Gard.asil debate, which btw, my daughter will never have.
Surprise.
What's on your mind?

Monday, August 17, 2009

9 months


Be still my heart.

Saturday, August 15, 2009

Flashbacks

Where do the words start? I guess where the feelings end. Not really where they end but where they spill over and out of the not so quiet corners of my mind and finally garner enough strength to make themselves heard outside of my mind, outside of myself.
I've been having flashbacks. Bad ones. I didn't even realize that is what they were, until recently. I thought the constant replaying of the moments in the doctors office when I thought Cason was dead was just, (and I use the term 'just' so lightly it is weightless) me reliving it. And it is that too. But it occurs to me that these visions, popping into my head without warning and playing themselves out, over and over again, are more than that. I am, or at least I feel, powerless to stop them from happening. They come without warning, sometimes triggered by something someone says or asks about Cason, other times all on their own.
When it happens, I am sucked back into that room, I see Cason hovering over the exam table, his body dusty and gray and limp, I don't know who is holding him, I can't see the hands under him, are they mine, are they the doctors, I don't know. I can feel the room shrinking and all I can see is him, there over the table, lifeless, and in my mind, in my heart, in that moment, he is dead. Gone from me. And I think, "That is all I got with him and now he's gone." I am cold and I am resigned. Of course my baby is dead. That is what my babies do. They die. I feel myself letting him go, saying good-bye to him. I begin the fall back into the pit of which I thought I had escaped and I don't even try to stop it. I tell myself to just let go. It's what I have to do. It's the only thing I can do.
Then I come back to the present. I shut it off. I tell myself he's alive, he's here, he's o.k.. But still, the tears come, the sadness, the idea that I was so close to losing him. It overwhelms me. The idea that it could happen again, it paralyzes me. The mere thought of witnessing anything like that ever again, cripples me. Standing in a room, watching your child die, knowing you are helpless to stop it or feeling helpless to stop it, it's terrifying. Life. Altering. Terrifying.
Even with the living, breathing baby I have, the terror of that day, of those moments won't go away. Every time I leave the house and I check my purse and the diaper bag to be sure I have no less than 3 epi pens with me, every time he makes a funny sound when he sleeps, every time he looks like he might be getting a rash, every time someone touches him without asking and I brush their kind gesture away thinking have you eaten or touched something that might kill my son? Every time. Every God Damn Time.
That is what I see.
And I don't know how to make it stop.

Thursday, August 13, 2009

Funky Town

I'm in a funk. I've been reading but my comments have been lacking and for that I am sorry. I have taken so much in the way of support here and I hate to not be able to give back that which has been so tenderly and continuously and unselfishly offered to me.

I am not sure what has me so down. The summer has been good to me, to us, for the most part. Not too hot, not too unbearable. A few more trips to the beach than I imagined I'd get with Master Cason on board and even a couple of days away, him tucked safely with Grandma, while Grandpa and his older brother and sister and mom and dad went and played in the boat and baked in the hot Arizona sun(an annual journey that for the past two years I made with a baby in my belly, one alive and one...well...not, as it turned out.)And again I didn't think that trip would happen this year either, but it did, so I am happy as I don't know how many more trips I'll get like that with all three generations, many I hope, but you never know.

Yet here I am, in funky town. Cason turns 9 months next week. He'll be out of me as long as he was in me. Somehow that makes me sad. As if he becomes more a part of this world and less a part of me now. Which is a good thing, it is as it should be and I know that. It's what I want for him. Obviously, right? But still. As hard as that pregnancy was on my mental state and the emotional roller coaster it sent me on, I miss it. Maybe it is the knowing that those days are all completely behind me, finito, done, complete, but not. Not really. The final score doesn't add up. It is not a balanced equation. The sum does not equal its parts. They never will. I briefly entertained the idea of throwing another baby into the mix. Yea, you read that right. In the first weeks after Cason was born I thought about it. About trying to give him a sibling closer to his age. Given all that came before him, he is two years younger than we imagined our third being and that puts him 7 and 11 years behind his older bro and sis. So I thought to myself, with the help of some perco.cet and viocodi.n, quick, do it again and then everything will be ok. But then, of course I really thought about it and knew there was just no way I could handle another pregnancy. No fucking way. And certainly not another loss. So I closed the door. HARD.
And now here I am almost 9 months later, time enough for that pregnancy, and I think I resent having to make the decision the way I did. Which, I imagine, is the same for many who for whatever reason, some more painful, tenfold more painful, have 'decided' they can't do it again. It's not a "Hey, do you like the red shirt or the blue shirt better?" type of decision. It's a "hey how much more torture do you feel you can stand and how much do you really want to risk when it comes to your sanity and is what you have right now enough to hold onto so that you can let go of the idea of what you think you might get IF everything goes perfectly?" type of mental gymnastics question. And in the end it didn't feel like a choice, it felt more like resignation. Which is weird to me because I never wanted 4 kids ( and yes I know I have 4 but...yea that) so it surprises me to feel so conflicted and still not conflicted, if that makes sense.

And then there is the 2 year point, looming. And the days, the routine of summer and vacations to the same places, the jokes about how finally 'this time' I can do things I couldn't do before, not the last two times because I was pregnant. And while they are meant to be playful and I have even made some myself, they sting because, they do. Because it still does. He is not here. And then he was. I still hoped then. I don't now. And laughing at the inconvenience of his pregnancy just feels bad. It's all I had of him. Ever. So these days are both beautiful and bleak for me. I have so much and yet what I don't have looms larger as the summer winds down. People speak of Labor Day plans and I think of my labor day weekend two years ago where I labored only to give birth to death. It is hard to make plans to cherish the last days of summer when it coincides so perfectly with what were my last days with him.

I think what I need is to bury my head for awhile and look up only when I know it is all behind me. But then I realize it is all behind me and that, perhaps, is why, I remain here in funky town.

Thursday, July 30, 2009

Lovesongs & Lullabies

I used to think a good love song was the most sure fire way to evoke the strongest of emotions. What greater love is there than that of the unrequited, unfulfilled and irrevocably broken heart, I used to ask myself. At the time, of course, I was the not so proud owner of said lonely and shattered heart. I spent many a night pining away for the man I thought was the love of my life. It came to me much later, the knowledge that he truly was only a boy. I see that now, but at the time, oh so many years ago, and for more years than he was worth, I carried a torch and would gladly open my door, at any hour, if he came a calling. And any good love song with lyrics to soothe my aching heart, was worth listening to in my little world.

Me and the girls(friends not breasts) spent many a night over too many to count bottles of good, no wait, bad, really bad, wine, or if it had been a good tip week, some really excellent Stoli or even better, Bombay Sapphire, lamenting the ways of the world and our tired hearts. We had big aspirations, mind you, we were all career girls, college students and later graduate school too. Our school loans were not so wisely, or depending on your perspective, very wisely, used to fund many an international trip. We traveled, we worked, we played, we did it all. And through it all, one of us could usually be counted on to harbor a broken heart to lug along and make the trip a little more dramatic. We'd circle the wagons and commiserate together. And always there was music to accompany the saga. A chorus of "There's no sunshine when you're gone." or a few notes from Billie Holiday were sure to release a few tears, only after the liquid therapy had had a chance to free up those not so buried emotions.

And then slowly, we fell. One by one. Love. Marriage. The baby carriage. Life seemed to work itself out. For awhile.

I could still hear an old love song and hearken my way back to those days gone by, romanticized now, a bygone, the path not taken, the what ifs. Love songs were always good for a melancholy moment.

And even after I had my first two babies. Still the love songs would beckon. Invite me to reminisce. Indulge for a moment in what might have been. I'd let them take me away to the place I used to be. The place where there were no boundaries, where my dreams soared and my future was open and endless. A time when I thought I knew myself so well, when in reality, I didn't know myself at all.

I was young and neither my head nor my heart had even the tiniest of inklings of what they would one day learn and need to survive. I was naive in the most beautiful sense of the word. Everything I had 'lived' through was deliciously pedestrian. Not that I knew it at the time. And believe me when I tell you there was a time, a night of alcohol, good-bye love letters, broken glass and blood when I thought it was so much more dire and hopeless than it ever really was. But that's a story and a post, that may never be written....

As the days passed and the years accumulated, I still allowed myself that luxury of listening. I let the love songs tell their story and I found comfort in the verses. They told tales of longing I no longer knew, yearnings of young love and wishes of hearts wanting desperately to be loved. Something about those melodies was familiar and comforting to me. Fairytales is what they were. And everyone knows fairytales aren't real.

And then there was THAT day. The day where in a moment, it all changed.

I felt a pain that had never been told of in a love song.

Fairlytales didn't belong in this world anymore. Lost love would have been a relief. A broken heart over a non-committal suitor hardly seemed worth the effort. Was it ever?

Sitting alone at night in those first, long, lonely, dark nights after losing Caleb, I searched for comfort in music. The old standards didn't bring it. They could never speak to the loss of a child, the love a parent knows, the consuming pain of a parent who has just witnessed the birth and death of their dreams, of their tiny, lifeless, baby.

And then I started listening to lullabies. They were written for babies. They spoke to babies. They wished for babies. They longed for babies to have full lives, to know joy, to find comfort in their mother's arms, to play hard and sleep deep. To put their tiny hand into their father's larger one and walk together, to laugh at the sun and clouds, to dream of life and all it's possibilities, to imagine tales of dragons and growing old, to always know they are wanted and most of all... loved. Lullabies don't know the difference between a child born alive and a baby born dead. They sing the song of the heart of a parent, a parent who knows and wants these things long before their child is born, long before the world has defined them as 'real' or not. The lullabies may not have known my pain but they did know my yearning, my aching to tell my son these things, to have the chance to wish for him all the things he should have had.

And so it came to be that I would sit at night, again with a drink in hand, now always with good wine, although it could have been in a box and it wouldn't have tasted any different to my soured senses and how many bottles of good liquor were spent isn't a guess I'd like to venture....and I would listen to lullabies. I would let my heart bleed and my eyes drain until there seemed to be nothing left to release or sometimes just until the last ice cube had been resoundingly smashed between my teeth and the empty glass tucked away for another night. But those songs, oh those songs. Somehow those songs written to sooth and comfort did exactly that. And I remembered then, a cold winter day, years ago, standing abreast of my best friend from high schools graveside, huddled close to other friends as we sang "Puff the Magic Dragon" at his mother's request. And I understood now, so much more than I did then, why she wanted us to do that for him, for her, absolutely for her.

So many years later as I sat and listened and planned a funeral for my son, a funeral that we never had, (another post, maybe) all of the music I envisioned for him, for me, all of it, lullabies. Love songs have nothing on lullabies. They brought me comfort as I sat and felt my heart break wide open. Just as I imagine the chorus of young adults voices breaking over a cold and barren hillside on an early December morning brought comfort to my friends mom so many years ago.

I still listen to lovesongs. I think mostly they are silly. I often argue with them. If you love her/him, tell him. If they don't love you back, get on with it. Just get on with it.

I still listen to lullabies. They always make me cry. I often try to sing along, but can't. If you love your baby, you can't tell them enough. And they always love you back, if they get the chance. If they don't, you don't, get that chance, you have to learn, so gingerly, so painstakingly, how to get on with it. Just get on with it.

Caleb is my unfinished lullabye...I hear his song in my head but the lyrics are quiet.

And still, the other music will play on...the lovesongs and the lullabies. Always the lullabies.

Tuesday, June 23, 2009

Colors

It's happened so many times now that even I have to admit it's odd. People often say to me or the husband or the grandparents or to whomever might be holding Cason, that he has very wise eyes. That he seems an old soul. I know it sounds corny. Really corny. But still. After hearing it over and over and over again from so many different and totally unconnected sources, it's become almost unsettling.

And today, another mom who doesn't know 'the story', came up to me, as I held Cason and we cheered on his big sister as she raced valiantly in the first swim meet of the summer, and said, "He looks grateful, it seems like he is so happy to be here.", (here meaning being alive, as opposed to being at a swim meet for hours on end).

Hearing it I wanted to give her the whole story but I didn't. I haven't been one to put much stock into the whole life after death thing. Although I think it was over at Niobe's, where the idea of a soul that is destined to be born might be transferred from one baby to another if the first baby doesn't make it. I like that idea. The notion of a spirit that lingers needing a body only as a vessel, a carrier, and that the spirit is capable of surviving even if the vessel does not.

Do I think Cason is carrying Caleb's spirit? Not really. I think Cason is his own person. I don't want him to be a part of Caleb. It diminishes both of them. It reminds me of watching my daughter mixing play dough colors. It always seems like a good idea and is fun to watch at first. Taking two brightly colored and beautiful pieces of clay and rolling them together, watching them as they begin to merge, each still independent but now winding together like a barber shop poll or a candy cane. Each color unique for a while and then before you know it, the colors start to blend, they lose their vibrancy and there is no going back. You can't separate the two and you have to mix them to make just one color, one that is not as pretty as the two were separately. You realize that the mixing wasn't such a good idea after all.

I don't want either boy of mine to lose his identity. They both deserve to be vibrant in their own way and for their own life's purpose. So I hesitate to put more meaning into the recurrent comments that Cason has wise eyes or an old soul. But it's hard not to want to believe that he knows, somewhere deep down, the whole story and that maybe, just maybe, he knows even more than I do.