Wednesday, December 23, 2009


Truth be told, I never drink the white stuff, but, still, I think the message is clear...

Monday, December 21, 2009

Should Old Acquaintance....

There's just nothing like getting together with an old friend. Except, that is, getting together with an old, new, db friend. That is sooo much better.
It was like a rerun of an old, favorite tv episode. The characters were the same, (only slightly older and maybe a little rounder due to ummm, well, let's just say any pg after db changes a girl, some) the place the same, all of it so familiar and so perfect.
Yesterday afternoon I got to hang out with the lovely and much missed around these parts, C.,
She is the only dbl mom I have met in IRL. We got together almost two years ago, end of February 08 when she came to visit the happiest place on earth with her family. We had intended to drown our sorrows with cocktails but as it turned out I was in the middle of the tww and so she had to do my drinking for me. I was sure I wasn't pg but just couldn't risk it, just in case. As it turned out, I was, in fact, pg with Master Cason, and it was C., who was waiting on line to hear what happened after I POAS. And she kept quiet about the 'positive' results for weeks, until I outed myself.
So this time I was able to do the drinking, which you all know, I love me my drinks, and C., was kind enough to invite me over just as the hotel was offering a happy hour an Irish girl has gotta love, free drinks! I tell ya, that C., she rocks.
We got to sit and talk and giggle and laugh and share secrets like schoolgirls. And it was so great. I hadn't realized until sitting with her, that I really never actually TALK about db, being a db mom, about Caleb, about the whole thing. I only write about it.
It was a strange epiphany, really. As I told C., my personality has split as a result. It always feels as though there is something I am holding back, a barrier between me and whomever I am speaking with. The deep dark secret of the 'real' me.
But not yesterday. Yesterday, we both just got be, real.
She's on her way back to her own digs now. And even though we have always stayed in touch via email and the old fashioned thing called a phone, and I know we will still, I already miss her.
Like I said, there's just nothing like hanging out with an old friend.

Friday, December 4, 2009


Many people talk about how when they were young they had an invisible playmate. The friend they could count on when no one else was available to help corral wild ponies or create delectable mud pies or to save the earth from certain, imminent catastrophe. Perhaps it was for the more mundane, a buddy to share a bowl of Cheerios with, someone to sit next to while taking in an episode of Tom and Jerry, a friendly ear to bend on a long cross country car ride. Invisible friends always laugh at the right parts in movies, they never interrupt or argue and they are always, there.
I never had an invisible friend. I had 2 brothers and 1 sister, a myriad of dogs, cats, gerbils and guinea pigs and an entire neighborhood, well stocked with kids of all ages and both genders, to keep a growing girl busy. Truthfully, I never really understood the whole concept of an imaginary playmate. I never felt the need to invent or create another character to fill in a blank in my life.

But I have one now.

It only recently occurred to me that that is what Caleb has become to me. He is my invisible reality. I take him everywhere. Sometimes I don't even realize he has come along. He pops into my head seemingly from out of nowhere and hangs out for a while before disappearing into the depths of my soul.
He is truly invisible in that he has no image in my mind. I don't see him as a baby or a child. I can't picture him in my minds eye. His presence is enormous and yet I can not describe him in any way. I do not see him. I feel him.
I don't often talk about Caleb in real life. If he comes up at all it is more about the 'event' than about him. It's not as though people when finding out you have a stillborn child, ask you what your hopes or dreams were for that child. They don't ask what he looked like or how his kicks felt and they can't ask about his laugh or his cry because he never had the chance to have either. And later, years later, they can't ask what's new with your dead child because, obviously, nothing has changed. I suppose to the outside world he really is just something that happened to me. He is not real to most people.
In many ways I am to blame for that. I have held him so close and refused to share him with anyone in any meaningful way for so long that he has slipped farther and farther away into the past. I don't do anything to mark either his due date or the day he died. I don't bake cakes, or release balloons, light candles or release butterflies. My mom and dad bring flowers over every year to mark the date he was born but even then, we never talk about him. And really, I prefer it that way. I don't want to go 'there' anymore. I don't want to feel as sad as I do when I think about him, outloud.
So instead, I have wrapped him up and packed him away from everyone. His ashes sit on a shelf in our bedroom below a piece of card stock imprinted with his tiny hand and foot prints. No one sees him but us.
And yet.
I carry him with me always. I don't have silent conversations with him but I do have quiet moments with him. Quiet moments without him. With.out.him.

Life goes on, without him. I can't picture him in this life of mine in anyway other than how he is now, gone from it. I can't see him as a two year old, not even when I look at his cousin with whom he was supposed to share his birth week. When I see her and try to picture him with her, all I see is, nothing. A black hole of vacant space that should have been filled by a child. But isn't. When I hold Cason in my arms and look into his eyes, it chills me to my core to even think of him not being here, to try and picture another child here in his place. I remember when Cason was born, the moment I held him I thought to myself I can't ever think about wanting Caleb here again because then I will be wishing Cason wasn't here. I knew then that I had to let him go but it was one of the most painful moments of my life and time has not made it any easier.
I hate thinking like that. God, I hate it.
My life is what it is now. I don't have him here. I can't change that. I know that. But still, he is here. In the only way he can be. In my mind. On the corners of conversations. In words unspoken and in the newly planted flowers that bloom in my garden.
And on any given day, when I am driving in my car, my children in various seats beside and behind me, laughing or fighting, crying or sleeping, I can look into my rear view mirror and there in the periphery, I see him.
A shadow in the back seat. My imaginary playmate.

Thursday, November 26, 2009

Friday, November 20, 2009

I can't even imagine

I came across this article tonight. It makes me physically ill. Wrong, doesn't even begin to say it.
But it is, just so wrong.

Tuesday, November 17, 2009


Happy 1st Birthday to my little Leprechaun. You are my pot of gold. I love you more than you, or words, will ever know.

Thursday, October 22, 2009

Silence is golden...

I was talking with a mom from my daughters school today. She doesn't know 'the story'. She met me last year, right around this time. I was 9 months pg. She saw me only as one of them, the shiny, happy them. Today she was holding Cason and commenting on how quickly a year had passed and she couldn't believe he was going to be one in just a few weeks. Then she started asking more questions, the ones we all dread. Questions that a few years ago would only have been idle chatter, how many, how old, what grade, smile, nod, smile, nod, go on with your day.
Now, of course, those questions trigger the inner dialog in my head. The 'outloud' answer and the 'inside voice' answer. And for me, even more sensitive to the ever prying nature of those questions is the age gap between my daughter and Cason. 7 years to those looking in from the outside. And I can see them wondering and wanting to ask was Cason an oops baby.
Most people don't ask it, but I know they think it. She had that look. Not a judging look, she is really a sweet lady from what I know of her, but still, I knew when she asked me the ages of my others, the thought had crossed her mind.
And before I could think it through I said, there was another one, a baby boy, we lost him in between her and Cason. He was stillborn. And I watched her face transform. And I watched the air disappear and I felt bad, I felt like I had to fix the damage I had just done. So I quickly blurted out,over her attempt to offer words of sympathy, "so Cason is our magic baby". I have no idea WHERE that phrase came from. And I hated the sound of the words as soon as they left my mouth. And I hated myself for trying to gloss over Caleb. And I hated even being in that room for another second.
I don't know what I expected, I don't know what I wanted, I don't know what was going on in my head. I do know, it will be a long time before I let myself go 'there' again.
Will I ever figure out how to answer those damn questions?

Monday, October 19, 2009


For Niobe:)
It got even thicker overnight, but I promise you there is some tasty soup in that bowl!! The bread will be perfect with it.
What's on your menu for tonight?

Friday, October 16, 2009

11 months...already

At least when he wakes me up at 2 in the morning to nurse because he STILL WON"T sleep through the night, he dresses for the occasion...What are your plans for the weekend????

Thursday, October 15, 2009

I remember

Today is Pregnancy and Infant Loss Remembrance Day. I will be lighting a candle tonight at 7p.m. and thinking about all of the babies I have come to know since joining this db club, babies I will never meet, babies who should have been, here. They have all changed me, they all made a difference and they all are missed.

I love you Caleb.

Friday, September 18, 2009

Living with 'IT'

Both Tash and Charmer wrote great posts this week about life after and perspective and how us db moms are seen through the eyes of the world. It struck me in the reading, how irked I get when people gloss over the grief, the whole process of grief.

At two years out, I am not anywhere near the same place I was that black September of 07. My life has evolved, moved on, continued. Really, when you think about it, there were only two choices, find a way to go forward or die. I chose the former. I had to. I had two other children who needed me to. I don't know, honestly, what I would have done if they hadn't needed me. I don't know how far I would have fallen, how deep the depression would have taken me. I have watched others who lost their first baby, find their way out. I like to hope I would have too. But none of us ever really know how we would carry someone elses burden. How we would react to any given situation. We know our own life, we take what is thrown at us and we try to figure out how to muddle through. We stumble, we falter, we collapse. And then somehow, we get up. Maybe it was a hand reaching through the darkness, or a voice calling out to us that reminded us we weren't alone. Maybe it was sheer force of will. Or a combination of all of it. The knowing there were others out there, the desire to start anew, the absolute determination not to give up. At least not yet.

And it is all of that, all of that hard work, that inner battle of demons, the taking on of forces beyond our control, the daily, sometimes hourly or even the minute by minute by second by second fight to survive, to continue, to exist, it is the all of that, that people don't see, they don't get, they can never understand. And it is in the missing of this part of the journey that makes it so easy for them to caricature a db mom into some sort of misfit, or episodic tragedy. "oh, she has a dead baby, that's why she is _____". It makes for a nice story line, a wonderful tragic event that turns the best, most capable woman into a weeping pile of compost, no longer able to function in a 'normal' world. Just last nite I watched last years season finale of 'pri.vate prac.tice'. I don't watch this show, I don't know the characters but, lucky me, one of the main characters, a psych of some sort, was pg and her patient showed up at her house with a needle full of some drug so that she(patient) could literally rip the baby out of main characters belly. Why? you may ask...because her baby died and that is what db moms do. We wander the earth seeking out other pg moms who must be carrying our db and then we slice them open and take what is rightfully ours...sighs.

I hate that that is how we are portrayed. I hate that the middle ground, where most of us reside, is so forgotten in the talking about child loss. We here throw the db moniker around so freely, we say the words, DEAD BABY all the time and sometimes it slips over into my other life and I *shudder* say it out loud. "I talked to my friend, my DEAD BABY friend about ______and..." and then the conversation stops because everyone has dropped jaws and wide eyes and argh how do we respond to that they wonder. Even my good SF friend said to me recently, "You have to find another name for your group." And I said to her, no we don't, it is a perfectly horrific name for us because what happened to us was HORRIFIC. It should make you cringe. It should make you stop and think. You should have to pause and for the tiniest of moments feel the least bit of awe and yes, maybe even uncomfortable, because MY BABY DIED. I don't want pity, I don't expect you to know or 'get' what I feel, I know you can't, but I do want you to stop for a minute and try and recognize what it is that I have lived through. What I lost and what I am living without.

There is more to baby loss, child loss, than the loss. There is the living with the loss. The loss, it kills you. And then somehow, you are resurrected. You find yourself within the shell of what you used to know, all things around you seemingly unchanged, life has gone on and you are standing in the middle of it, stripped bare, empty, and still the world requires you to be you. Sure there is the 'appropriate' grieving time, but after that, get on with it, move on, live, god damn it, live. And begrudgingly, most of us do. But it takes so much work to do it. But each day we rise and face the sun and we do, live with it. People have remarked, "I don't know how you do it, I could never have recovered from a loss like that" or some other variation of those words. And I think to myself, yes you would. You do somehow recover. It doesn't happen overnight, it doesn't even happen because you want it to. Truthfully, in the beginning, recovering doesn't even seem like an option. It is a concept that you can't even grasp. In the beginning you want the darkness to swallow you whole and never spit you out. But as the long, hard days and even darker, endless nights stretch out and become weeks and then months, you find yourself struggling to be free of the darkness once more. Is the daylight more appealing? Not really, but the cold, shadowy pit of grief has become less comforting and so you seek an alternate place of refuge. And you rejoin the world of the living because it is no longer the people you want to hide from but your feelings. All of them.
Those first few weeks of mingling between the night and the day, the dark and the light, were for me the most trying and exhausting days of my life. After the immediacy of the days surrounding losing Caleb had passed, the days when I buried my head and my heart, my former life beckoned me. My children cried out for me. And I went to them. And it took every ounce of energy I had to get up each day and function, even at the barest minimum. To talk with other parents, to drive, to attend meetings and sporting events, to plan, to execute, to grocery shop, to make any decisions at all, it sucked what little life I had within me, right back out of me. It wasn't until December, almost four months later that I stopped moving long enough to let myself breathe. And then I collapsed, physically and mentally. Auto pilot shut off and I went down. I needed to. I didn't stay there for long but it was enough to remind me that there was a lot more to healing than just waking up everyday. And there still is.
Two years later, my life has traversed many a road. All of our lives have. We may look mostly the same to the people who see us, we may even seem amazingly similar to the person we were 'before', shhh, our babies died. I can laugh, I can sing, (badly), I can do most any of the things I used to do. Just as all of the mothers I know who have also lost their babies are doing. It has been and continues to be, a mighty struggle to do this. Which isn't to say it hasn't gotten easier because it has, but nonetheless, it is a struggle, with some days, most days, infinitely better than others.
Which brings me back to what irks me. It has taken a lot to get here. It was, it is, a process. It is still happening. I didn't get here be accident or by design but I did get here. We all got here. Where is here? It is ordinary. It is day to day. It is nothing special and yet it is still extraordinary. It's not locked up in a padded room, it is not seeking out the pg woman who has somehow stolen my baby and tucked it away into her uterus and it is not a vengeful, unfeeling, demented woman. It is a plain wrapped, basic, sometimes witty and occasionally smart assed mom, it might be an accountant, or a doctor, a teacher, a lawyer, a writer, a sports enthusiast, a computer guru, it comes in all shapes and sizes. It comes as you and me. I wish people could see that beyond the polar extreme of bat shit crazy there exists the lot of us. The db moms who wander in their world, our world too. And I wish that they would see us for who we really are.
Not fantastic, not superheros, not someone who has done something they could 'never' do. Nope, we are just db moms and we are living with it.

Tuesday, September 1, 2009


I've thought about what to say, what to write here after 2 years. Is there more to say? Have I left anything out? I've told his story, what little there is to tell. The real story doesn't have words and it continues on each day, even though he is long gone from me. Physically gone that is. I guess that is what becomes so hard. As each day passes he slips farther away from my physical self. The memory of his kicks and rolls within me dim and are overshadowed by the nightmare of his birth. The feeling of him literally slipping out of my body and away from this earth. The hollowness of my empty belly, the numbness of my legs and mind, they are what I remember.
I think from the outside to the casual and even not so casual observer, I appear healed. I'm not.

There is no real healing when you lose a child. There is no point in time where you are able to evaluate your loss and make peace with it. Not for me. It will never be okay, it will never sit comfortably in my cache of emotional baggage as something I have 'gotten over'. Yes, I have resumed my life, I have laughed again, I have been silly, I have thrown a party or two and I have even had another baby, but none of those things have made any difference in the loss of my son, Caleb. His absence is still enormous. I look at my three living children as they play together, the two older ones fawning over their little brother and I see him, not there. I even stop myself sometimes when I think how happy it makes me to see them all together and I think of him, not here, missing the tickles of his siblings, missing their light kisses on his head, missing their continuous antics to make a giggle erupt, and I think how robbed he was, how robbed we all were. My oldest recently said to me out of nowhere, "I wish we had them both here mom.", and I knew it is not just me who feels that his absence is so huge that it is palpable.

A day has not gone by where I haven't thought of him, missed him, yearned for him. I think people believe that losing a baby, a child, is like any other death. They acknowledge the greater tragedy, but not the greater grief. What makes the grief so hard for me is that there just isn't that point where I can look back and reminisce and share fond memories of him and his life. There is no past with which I can comfort myself in the future. His past is his death. His tiny, short life within me was just exactly that, within me. No one else shared it. No one else even saw him, only my husband and I. And his pictures are not ones that bring me comfort. They break me. They reflect a baby who had his life stolen away from him. A perfectly tiny baby with every tiny piece of his body in place, ready to face life only to have it choked out of him by a cord defect. I can't reminisce or look back fondly on our time together because it all wraps itself in the cloak of his numbered days with me. With us.

He permeates my being. He is such a huge part of who I am and yet to most people he doesn't exist. If he is acknowledged at all it is because someone might say or think, "Oh yea, she is the one whose baby died." which makes it about me and my loss not about him and what he lost.
I remember sitting with him at the mortuary telling him he was wanted and loved and trying to reassure myself that I told him all the things I should tell him but having no idea how to do it. My husband left the room, he couldn't even bear to look at Caleb, just as he doesn't talk about him now. Too much. Way too much. So I sat alone with him, just as I sit alone with his memory now, and I try to make sure I say the right things, that I tell him what he needs to know, that I do right by him.

Even now as he drifts farther away from me, I feel the need to pull him closer. To make myself remember the tiniest of details about him and his brief time here on this earth. And to make his life meaningful, to make it matter, to make sure that it is clear he mattered, that he still does and that he always will, matter. I never want anyone to think he is something I got over. I won't. I will live my life without him, everyday. And everyday I will think of him, I will miss him, I will love him and I will wish like hell he was still here. Because like my son, I want both of them, Cason and Caleb, here.

Two years ago, on September 1, 2007, I gave birth to my son Caleb. He never took a breath, cried or opened his eyes. He never felt my hand as I lifted his foot to look at his tiny perfect toes. He never heard my cries as I felt him leave my body. He never heard me tell him I love him. But I said it anyway and still do to this day. I whisper it to the winds and the skies and hope that he hears it. Hope that he knows, that he knew.

People say that there isn't a word to describe the pain you feel when you lose a child. In my head I say yes, there is, and I whisper,


Monday, August 31, 2009


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
with some interesting information on that topic and on the whole Gard.asil debate, which btw, my daughter will never have.
What's on your mind?

Monday, August 17, 2009

9 months

Be still my heart.

Saturday, August 15, 2009


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


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.

Saturday, June 20, 2009

Because not all dad's deserve a Father's Day

I was all set to wax poetic about my husband and all that he's done to earn some rightful recognition on his parenting(letting C1 watch Chuckie at the ripe old age of 2 not included for obvious reasons...) but I thought I'd provide a public service announcement instead.

This, is not what Father's Day is all about. I remind all who tread on the hallowed grounds of spermiNation to remember it is not about QUANTITY. The mere fact that you may have millions of wee swimmers bound and determined to quick time it up to a lowly, waiting egg, does not mean you must use them all for such a lofty goal.
While your head and longing loins(are they one and the same I ask you?) may cry out for hasty gratification, let your wallet be your guide. If for no other reason then it knows, by simple addition, the price you can not afford to pay. For even when it is filled to the gils by the mere minimum wages and no doubt hard earned dollars you pack away, it fails to support the 20 something offspring created by your nimble nether parts. It is here we find that the old adage is not always true. You sir, have proven, that your sum is not greater than your parts. Congratulations. My how proud you must be.
And while I applaud you, (not really), for knowing or at least professing to know, each and every one of their birthdays and WOW, even their ever lovin NAMES, now there's a feat oft only accomplished by weaker, less fertile men no doubt, who strive to remember only a mere one or two, maybe even three or four names attached to living breathing children, I can not muster the strength to support your endeavors. I wonder, will they each come to visit you as you sit, on others dimes, in jail for failure to support them in other more meaningful ways, like maybe, I don't know, spending time with them, instead of, doing time for them?
I'm glad to read that you have stated "I'm done, I'll say I'm done.", I have to question why now? Why,after 20 or possibly 21 children, does it matter, really? Has the light suddenly bestowed some infinite wisdom on you? Why not go for the even two dozen? You're only 29, you have years of fertility left in which you might share more of yourself with the rest of us.
I doubt, call me crazy, it comes from some sense of moral certainty that your creative days are behind you. I suspect, instead, that you find it infinitely more difficult to procreate in an environment that refuses you conjugal rights. I shudder at the thought.
And so, forgive me, if I don't wish you a Happy Father's Day. Something tells me that the only folks who are celebrating you right now are the fat cats at Hallmark. But I could be wrong. Lord, I hope not.

Tuesday, June 16, 2009


Thanks to Niobe I found a really productive way to spend my yourself, well at least your name, beginning with "unfortunately________" filling in your name and see what pops up.

So here's what I have been 'unfortunately' up to:

"Unfortunately k@lakly has a bit of an injury history..." Boy that's an understatement.

"Unfortunately k@lakly does oppose contraception-an evidence based measure to prevent unwanted pregnancies and reduce the need for abortion..." Now that could NOT be farther from the truth but I had to laugh when reading it and considering where I was putting the words and given most of the people who read here are actively trying TO get pregnant...

"Unfortunately k@lakly failed to capitalize on even that slight advantage." Yea, that's me, fail to capitalize, all the fricken time.

"Unfortunately k@lakly attacks Sinatra with about as much grace as would result from you trying to take out the pit of a cherry using a pneumatic drill..." I LOVE that! But I have never attacked old blue eyes, even in jest.

So what about YOU????

Sunday, June 14, 2009

One of a kind

That's us. We met with the new doc again. (I call him Dr. Books, and I really do heart him). Here's the scoop. After all of his research and reaching out to all of the other allergy type minded docs he knows and even ones he doesn't, searching high and low for guidance on how to proceed with Cason, guess what? They can't find another baby who, at 4 months, had this kind of reaction to the vaccines. Not a one. Cason is in a world occupied by uno, him and him alone. Normally, I am all about unique and being your own individual but I gotta say, here, I would have liked some reassurance that this has happened before and here's how we handled it. That would have been useful. But, not me, not my child, not my life.
That being said, at least my doc has made it so that we don't feel as though we are all alone. He plans to see us through this even if our plan is, we don't have a plan. Which feels so much better than what the other doc, little Doogie Howser, whose mantra was, "lets just rush into this the same way we would any other allergy and start sticking Cason with things we think might trigger a reaction" wanted to do.

So for now, our plan is do nothing. No shots, no tests, nada. Cason is helathy. My elimination diet (now down to no dairy and no nuts with wheat and eggs back in) has really helped clear his skin up and settle his belly. He is healthy and developmentally on schedule. Dr. Books feels after conferring with a conference full of allergists and other immunoligists, which has to be a rip roaring good time, that waiting until Cason has a more established immune system and is older(maybe 2) and better able to communicate with us, IF we test him, is the best course of action. He doesn't feel any sense of urgency. The vaccines, while important, do not have to be given at this young age. It is unlikely(yes, let's all laugh as I type that) that he will be exposed to any of the diseases in the shots. We aren't big travelers(thank you fear of flying) and he won't be in daycare(thank you overpriced and sorely underused education ) so why not wait until we can more reliably test his immune system. The only hiccup in the plan is that we are waiting for the federal investigation to be completed. This is being headed up by a doctor at Joh.ns...Hop.kins and is part of a C>D>C Adverse Event investigation, that is looking into what happened with Cason. They will make a recommendation to us and it probably will include a particular blood test for one of the ingredients in one of the vaccines. The recommendation will allow Doctor Books to order the test which is not commercially available to him. This test he wants to do. It's 'only' a blood test so there is no risk that comes with it. Unless, of course, they screw it up and use a dirty needle or rip his vein out, but I won't go there.

So for now, we wait. I drink wine, in moderation...there's a term I rarely use in connection with alcohol, and skip the cheese. And Cason, he just eats, drinks and stays healthy. I hope. He is after all, one of a kind.

Wednesday, June 10, 2009

And good morning to you too

Over breakfast, baby cereal and Diet C.oke this morning:

Daughter: "Mommy how many babies died in your tummy?"

Mommy: Pausing to swallow new lump in throat, "3."

Daughter: "You have SIX childs!!!!!, SIX childs!!!!!"

Mommy: silence

Daughter: "Bye, Mommy, I love you, see you after school."

Mommy: Out loud, "Have a great day, I love you too!" In my head, "I need some Capt. Morgan."

How did your morning go?

Friday, May 22, 2009

Umm, duh.

My thinking is: If you've had enough that you have to test, you've probably had too much.
I'm going to go get shitfaced and test one or all eight of these bad boys out....
Happy 3 day weekend everyone!

Monday, May 18, 2009

Chasing Zebra's

There is a saying that floats around in grad school, especially medical school.
"When you hear hoof beats think horses, not zebra's."
It's a simple concept really, seek out the ordinary not the extraordinary, when looking for answers. I suppose in the medical world it reigns in over-zealous, young doctors who are eager to diagnose every sniffle as malaria or every headache as a brain tumor. It makes sense in a horse filled world. If you live in one.
It's why the first doctor I wrote about wanted to dive right into scratch testing and other fundamental allergy type protocol. He's treating a horse.
It's also why I sought out a new doctor.
And found one. He's an educator, a leader and a practitioner. He heads up the regional allergy and asthma research group here. He has run hundreds of clinical trials. His resume is awesome. His knowledge seems omniscient. And when we went in for our appointment, he didn't disappoint. After taking a thorough history and answering every last question we had, going so far as to take the papers I had brought with me with all of my Dr. Google research out of my hands and reading it himself, he gave us his answer.
He told us, "I have never seen a case like this before or even read about one. I will not do anything until I have researched it myself. I am writing to every colleague I have and every publication out there to present this case. I want more information and answers before we do anything to your son." He said that even though he hasn't seen it, he knows someone else has and he wants to find that someone else.
He also told me to call my doctor and to get on Calcium supplements right away. (I've eliminated nuts, dairy, wheat and eggs from my diet because of the results of tests done on Cason in the hospital ) He treats the whole patient and right now, because I am still nursing, I am part of Cason.
No arrogance, no dismissing my concerns, no trying to fit Cason into a round hole with his right angle corners. No pretending to know what to do just because he is a doctor. He has more questions and he wants to find the answers.
So now we wait. And we try to catch this zebra of mine.

Thursday, April 23, 2009

Scratching the Surface

I hate medical research. Big words, lots of Latin(I sucked at Latin in high school) run on sentences and lots of contradictory information. My wee, overtired and rusty gray matter isn't used to all this smart people stuff. It's been awhile since I have had to use it for that purpose. And while I have amassed a number of degrees in my lifetime and am licensed, a scary thought, to practice all kinds of things here in my state, the big fat D- I got in anatomy my freshman year of college pretty much says it all when it comes to my ability to understand, let alone perform, medical procedures. And that is as it should be. Those who can, do, those who can't, teach and those who really can't, are patients, or in my case, the mom of a patient.
And even though my friends really do call me in times of medical need for a quick armchair diagnosis of many ailments, sadly I am not licensed to prescribe fun drugs or any for that matter, to anyone. I suppose the state knows I would hand out Vico.din like Halloween candy if given the chance. And the world would be a better place for it I assure you. But that's another post.
This whole allergy/anaphylaxis thing sucks. Bottom line is the docs want to find out why and what made Cason react like he did. So do I. But not at any risk to him. And guess what I have heard so far.
From my pediatrician, who I adore: "Cason isn't a good candidate for scratch testing because of his anaphylaxis." (Scratch testing is where an allergen is placed in a needle and then the patients skin is scratched with the needle to see if it reacts to the allergen) (Scratch testing can result in anaphylaxis).
Later that day from the allergist: "I want to scratch test Cason with the actual vaccines he got, diluted way back, to see if we can illicit a reaction."
From me: WTF?
Allergist then proceeds to use several phrases that generate a panic like response from my body. Phrases such as, 'highly unlikely", "very rare", "we've managed anaphylaxis in our office before", "we're equipped to handle that type of emergency here". He says these things to a woman, me, who in the past two and a half years has had a perforated uterus during a "routine' D & C and had to be rushed to the hospital because of this "rare" complication, a stillborn son, while not as rare as I thought, I later found out, it sure as hell wasn't on my radar either, and a son who according to the literature I've read, had a one in a million reaction to his vaccines. How am I supposed to take any comfort in a doctor telling me what he wants to do might, could, may, possibly, send my son back into a second episode of anaphylaxis? And I ask him, can you do it in a hospital and admit him for two days because anaphylaxis can take up to 48 hours to occur after an exposure to the allergen. He says that would mean he would have to stay at the hospital all day and he doesn't see how that would work for him. And I am in my head saying I don't see how exposing my 5 month old baby to something that can KILL him and just taking him home and watching him to see IF he has a reaction, works for me. Out loud I am trying to talk over the lump in my throat and I tell him just sitting in his office for a few hours for monitoring doesn't seem like enough, not near enough, precaution to me.
He tells me he understands my view. He knows it must have been very traumatic for me. He has NO FUCKING CLUE. I don't even know how traumatic it was for me because just thinking about it makes me want to vomit. The idea that I could have to watch it happen again. I can't even go there. The idea that it might be an acceptable risk to him and that he isn't willing to do anything more to protect against it than just watch and wait. Fucking nuts.
Allergist is going to talk to his partners about what I asked for. I doubt they will agree. My pediatrician thought it wasn't an unreasonable request. But of course, he saw the reaction first hand, the allergist didn't.
There are more blood tests they can do but none of them will conclusively tell us what happened. There is a theory that it was gela.tin, a binding agent in the DT.A.P vaccine but without eliminating the others we can't know if it was that or a combination of the vaccines or what. And if we want to have Cason vaccinated we need to know as much as possible about him and his allergies.
Which is why I am doing this medical research stuff. It is also why I need a vico.din. Damn D- in anatomy anyway.

Wednesday, April 8, 2009

What does luck have to do with it?

Many people in the past few days have said to me how lucky I am that what happened with Cason happened the way it did. Meaning it happened at the doctors and that I saw the hives when I did, because without a doubt if I hadn't and had instead, just put him in the car and drove home, he would have died in the car. He would be dead now. I physically shrivel at the thought.

But for these past days I have been thinking, I'm not lucky at all. I had to stand in a room and watch, I thought, my baby die. Even though I know now he didn't die, I can't change the feelings I had at that moment and I can't change the memory of it either. The searing moment when I implored my ped to save my baby, when he looked into my eyes and forcefully said, "He isn't going to die, Mrs. K., I won't let him." And I looked right back and told him, "You can't know that, you can't promise me that." Because I know too much. I know there are no promises or guarantees and I knew, even though he was calm and direct in his actions, that he too, even if he will never admit it to me, was scared shitless that my baby boy was going to die in his office right in front of us that day. And to me, that didn't feel lucky. And even after, when Cason was ok and we were home, I still didn't feel lucky. I felt angry and pissy that I had to be that scared again. That my family had to go through it, that I watched my mom age a couple decades overnight, That I saw my dad cry, again, over me and my child. That my older son once more asked if his brother was going to die and that I could see in his eyes the lost confidence in the world doing right by us.
It just didn't feel lucky. Not one bit. To me lucky would have meant not having had to live through any of it. Lucky would be getting vaccines and going home without a life threatening and life altering medical crisis happening before I got there. Or at least that's what I thought until this morning.
When I read this over at Aunt Becky's place.
And now I have been humbled back into my place and reminded just how absolutely fucking lucky I am, we were.
Cason is home, healthy. Severely allergic, but healthy. And as my husband says, we can deal with this. And he is right. I don't know how I would ever have dealt with the other outcome. The final, rip your heart out and stomp it into bits, your child is dead, outcome. The outcome that the Spohr family is living with at this very moment.
And I curse luck, fate, charma, God, whatever or whoever it is that controls the world, that manipulates our lives like puppets on strings. I don't want to know about these things. I don't want to know that not everyone gets what they deserve. I want to pull the covers up and hide away from all things dark and frightening. I want to shield my children from fear, from knowing hurt, from tears. And then, when I stop to breathe I tell myself, that is what life is. It is uncertain and scary and unfair and messy. It is joy, it is elation and it is euphoric. It is what it is.
And it makes me wonder, what does luck have to do with it?

Sunday, April 5, 2009


It was supposed to be routine. I actually didn't even worry before. I never even thought of sensitization. What I did think of was that he had already had all of these shots before. I had researched vaccinations like a crazy person before his first shots. We had declined the Hep B in the hospital when he was born and weren't going to let him get it until he was older. We declined the r.ot.a.virus too. It's too new and its adverse effects were still being investigated. The last r.o.ta. vaccine was pulled from the market because it was causing babies intestines to telescope(intesusseption). So we only went with the 'routine' vaccines that had been on the market for years, well tested and for the most part(and of course that's the line we glossed over) safe.

I have had many conversations with our ped about shots. I even brought in the article that had convinced me and the husband not to go with the Hep B shots, for my ped to read that day. That day I also told him, when the time came, I wanted the MMR shots given individually, not bundled, especially given Casons reaction to eggs and nuts when I eat them. Which I had stopped doing because he reacts(eczema flares, gas, rashes) so clearly to them.

I felt good. My mom and my daughter were there. We were laughing with the doc about benign things. We told my daughter how we were going to look away when Cason got the shots and then as soon as he started to cry we would all come and hold him and comfort him so he wouldn't think we gave him the shots only that we were there to make him feel better when they were done. It was over in a flash. The nurse lightning quick with the four sticks. I had him in my arms and his crying lasted only a mere moment and he was back to smiling at his sister and grandma. We dressed him and put him back in the car seat and strolled him out of the exam room. Stopped at the front desk to pick up a prescription and copy of the bill for my insurance. It took the girl longer than it should have, she was distracted. We left the office and walked out to the car. As we were saying our good byes to grandma, I looked down at Cason to pick his car seat up and put it in the car. His head was covered in hives. I told my mom. For a brief moment it didn't register, what was happening didn't click. My mom asked me if I was going to take him back in. Yes I said, we should go back.
In the elevator I took him out of his car seat. I went ahead of my mom and daughter to the office. I told the girl at the front desk, he's having a reaction to the shots, get the doctor. Another doctor came out and started to look at him in the hallway. She didn't know we had just been there. I remember her starting to tell me in a clinical way what they look for and I interrupted her saying we had only just gotten the shots a few minutes ago then I told her again to LOOK at him, he's not right. He's turning red, he's covered in hives and then she took us to an exam room. She started to listen to his breathing. He felt different in my arms. Heavier. My doctor came in. Now everything gets fuzzy in my memory. I can recall snapshots, not sequence. because here is where I watched my son turn blue. His lips are blue I yelled. He's not breathing I yelled. He's not crying anymore. Doctor Ped HELP HIM I yelled. And then, the image that is forever seared into my brain, my beautiful Cason, turned gray, went limp, eyes rolled back and I thought he was dead. And in my head the voice said, "That's all I got. That's all I got with him. 4 months. And now he's gone." I felt hollow and empty. I felt like Alice falling down the rabbit hole. Things were spinning, the room felt distorted and at an angle. I can't even remember if I was holding him or the doctor was. I can only see his lifeless body, dusty colored, hovering over the exam table. And then I know the doctor had him, he turned him over and rubbed him hard and Cason cried. And I shouted at someone to call 911. There were other people in the room I don't know who. The other doctor. My doc said to give him Benedr.yl. The other doc said get the epi pen. They did both. The paramedics came. They hooked him up to heart and breathing monitors. He was on oxygen. They wanted to take him to, I wanted Children's. They told me the other was closer. They decided he was stable 'enough' to make the farther trip and we were loaded into the ambulance and taken to Children's. The paramedics kept reassuring me of his breathing stats the whole way to the hospital but I knew he was deteriorating. I could tell by looking at him. I kept saying to him, "Don't leave me Cason, I love you Cason, stay awake Cason, fight Cason, I love you Cason, I love you Cason, I love you Cason."

When we got to the ER my husband was already there. My mom had called him. Cason was bright red and swollen. They put more oxygen on him and a breathing treatment, they put a big needle in his head and gave him a bunch of meds. Steroids, more benedr.yl, other things I can't remember. They had another epi pen standing by. I listened to the monitors, watching the numbers. Having an asthm.atic child, I know how to read the numbers. At some point my husband grabbed me and held me. I cried. We waited.

It took about an hour before the crush of medical people left the room. That's when I knew he was better. The numbers were stable before that but no one left so I knew they were still worried about a secondary reaction after the drugs wore off. After another two hours we were admitted to the hospital.

After two days of no sleep and lots of drugs, we came home.
And now we begin to unravel the mystery. Which I will write about later. But to clear up some confusion, my docs had heard of this type of reaction to the vaccines. None of them had seen it. Not to the shots Cason had. Not the Children's ped who had been there for 15 years either. They know it is a 'known' risk of any vaccine but none of them had actually seen it in a 4 month old with the four shots Cason got. So we have to find the component that triggered this. And until then, no more shots for Cason and we don't leave home without an epi pen.

Thank you to everyone who has offered help and information. I was well armed with data when the allergist came in to consult with us in the hospital. And it made a huge difference to know so many were holding us in your thoughts. A really big thank you to my lovely Aunt Becky for rallying the troops for me and for her ever lovin support the past few days. And to Coggy who kept me company over the wires. An unintended benefit of the time difference across the pond was that I could reach her at 2 a.m. when the hospital was quiet and I was freaking the fuck out and didn't want to wake my family who had taken over the kid duties at home. My other two were very happy to get to spend some time with their auntie who spoils them silly, even when there isn't a medical crisis.
I'm off to hide under the covers for a while. Maybe a long while.

Friday, April 3, 2009

Need Some Good Lovin' Here

Okay, so here I am, Becky from Mommy Wants Vodka hijacking my good friends blog with some news and a plea for some help, oh wise Internet (why yes, I am buttering you up).

Yesterday k@lakly took Cason into his 4 month well-baby visit and part of that visit is the ever-dreaded shots (Amelia got hers this week and it about broke my cold, shriveled heart). Today, he got diphtheria/tetanus/(and)pertussis, Haemophilus influenzae type b, polio, and prevnar.

Yesterday, he also ended up in anaphylaxis and stopped breathing. His momma (thank GOD) got him to the hospital in time and he’s stable now (thank GOD).

But this has stumped the doctors who have never seen anything like this before so his poor momma, k@lakly, asked me to post to the Internet to ask if anyone had seen this before.

So, wise Internet, rather than ask you to evaluate the size of my ever-widening ass, I beg your help. Has anyone, ANYONE heard of anything like this? Send her an email at kalakly (at) yahoo (dot) com or leave a comment here. Repost this, whatever it is that we can do to get this around.

And can everyone, EVERYONE send poor Cason and his momma some prayers and love today? They're in the hospital where she can check her email and her blog and I'm sure she could use all the kind words you all have for her.

Saturday, March 28, 2009

The ties that bind

I keep waiting to feel better. Waiting for the wound to feel less fresh, more healed. The other day my i*pod ran through to music I had loaded into it after Caleb died. I let it play to see if maybe now, listening to the songs would rest a little easier on my ears. Bring comfort, not pain.They didn't. This wound is a stubborn thing. No matter the time that passes, it will not scar over. I check it to see if maybe I only scratch at it lightly it won't bleed. But it still does. I don't even think a scab has taken up temporary residence over the gash. It's more like I have a tourniquet on it and if I let go of it, no matter how quickly, the freshness of the injury will be unveiled.
It's stubborn in its permanence. Tenacious in its grip. No matter how many days I put between myself and its arrival all I can do is grow accustomed to its vice like squeeze, learn to take shallower breaths, ignore its shadow as it lingers on the walls around me. Reminding me, sometimes quietly other times forcefully, that it is here to stay.
I can go about my days now with this unrelenting force hanging about and I am fairly adept at quieting it's almost melodic hmmmmm in the background. But eventually it will grow impatient with me and feel the need to shake me into recognition of its presence. A few days ago as I sat watching Cason in his jumpy seat he scrunched up his face, wrinkled his forehead and squinted his eyes, one eye drooping down as the other furrowed into his brow line. And he was the mirror image of one of the few actual pictures I have of Caleb after he was born. It took my breath away. As we, the husband and kids and I, laughed at the face Cason was making I wanted to say, I started to say, he looks just like Caleb in the picture I have. But the words stopped short in my throat. Caught by the lump that suddenly appeared and the rapid fire succession of thoughts that flew through my mind. If I mention the picture, the kids may want to see it. I don't want them to see it. Not being a full or even near full term baby, Caleb's pictures are not images I want my children to have of their lost brother. While I can see the baby I saw after delivery and his resemblance to his older sister, they will see a dead baby, who does not look peaceful and beautiful. Not to them. He looks unfinished and dead. Now in their minds he is a complete baby, a dead baby yes, but a baby that looks more like other babies do when they sleep. And if they have to have an image of their dead baby brother, that is the one I want them to have, not the other more real one that shows the horror of death, the rawness of life choked away too soon from an innocent baby.
I turned away to hide my eyes, to give myself the moments I needed to re-wrap the tourniquet, bind it more tightly, stop the fresh flow. One more time. Again.

And then I rejoined the living.

Tuesday, March 17, 2009

The hour I first believed

A year ago today I stepped into my jeans and pulled my Claddagh t-shirt over my head. I thought about my family and my past. I looked at the calender and counted. I had counted the days in my head before. I thought I was supposed to wait one more day. I had one more day of holding out hope that maybe, just maybe this would be the month. But when I actually saw the dates laid out in front of me and ticked them off, one by one, my finger stopped on the 17th when I got to 28. I did it again. Same result.
I felt the hollowness in my stomach turn to a twisting and stretching of what few muscles still lived there after the past year. I was dizzy and light-headed. I went upstairs and logged on, not ready to see what might or might not be happening in the deep, dark cave of my body. There was an email from C., she wanted to know if I had tested yet. Despite my absolute aversion to 'signs' I took this to be one. It was the nudge I needed.

I did it. In the ensuing moments, long, quiet, tense filled moments, I alternated between wanting to throw up and needing to cry. My hands shook so violently when I picked up the stick I thought I was going to drop it. And then I saw it. (+)

And that was the hour I first believed.

Happy Birthday to my Leprechaun. I love you.

Monday, March 9, 2009

Oh yeah, that's why I left you.

Just hearing about this travesty, so pardon me if I am behind the curve. After seeing it on the news and then reading about it, beyond all of the head smacking and genital bashing I would like to partake in at the moment, the only thing I can say is, boy do I feel good about my decision to walk away from that place.
My apologies to those of you who read here and are still members of that particular group. But it is actions such as these, piled on top of the YEARS of inaction and worse, deceptive actions in the molestation scandals, that have alienated so many, myself included, from them. Them being the powers that be, (yes, I am talking to you Mr. Pope and your cronies), that feel entitled to hold everyone, except themselves that is, up to some arbitrary, man made standards and laws, while calling it "the word of God" and then deciding whether or not one is worthy of worshiping with you. Hypocrites. Shame on you.
When I am done fuming I may write more about this. Right now I am far too angry to be constructive.

Sunday, March 8, 2009

Sophie took a trip away this past weekend. She was remembering her beautiful daughter Jordan, who took her last breath just a little over nine months ago. While she was there she also remembered some of our lost babies. And this is what I saw today when I went to read about her trip.

And I cried. Thank you, Sophie. Thank you.

Tuesday, March 3, 2009


Before, way before, when my life was moving along according to 'plan', I used to walk by the extra room in our house and wonder if someday, maybe, I'd get that last baby. We never decorated the room, when we bought the house we moved each of the kids into their own rooms, put ourselves in the Master and then sort of left the definition for the last room up in the air. It became a junk room with a desk and a computer and all the crap I didn't know what to do with or didn't want to deal with, ever. Occasionally it became a guest room, for the husband...not for couples counseling but for sleep deprivation issues(mine not his) related to his snooooring. It was never painted and the wallpaper was half way torn down by me in a late night I'm not sleeping so I might as well get something done stupor(obviously before the idea occurred to me to throw the husband out when the snooooring was bad). I always had it in my head that maybe, eventually, it would be a room for another baby. I was waiting for the green light from the master snorer. Which came some 4 years later. Yeah, we move quick, don't we.

I've had three pregnancies since then, one miscarriage, a stillborn son and Cason. I guess in the card game of pregnancy you could say I have a Full House. In total, I've been pregnant six times, My two other C's and another miscarriage. Maybe that makes a Royal Flush? The room has been successfully converted into a nursery for Cason although he only ever spends time on the changing table, not sure when I'll let him sleep that far away from me, but that's a post for another day.

Back then, before, I thought once I had that third baby I would feel it. "It" being the knowing feeling that would come telling me we were done with babymaking. I expected a comfortable peace, a settled in sense of a job well done and maybe even some nostalgia for the end of my fertile self. I thought the third would finish the sentence, put an ending to the story, that the extra room would get an identity and I would feel complete.
Maybe that would have been the case if things had gone according to plan. I never got there so I will never know.
My third child is dead. My fourth child is here with me and still I feel the ache from within calling for another child. And it seems I will never really be able to finish the sentence. In the beginning, in the days right after Cason was born I thought I really wanted another child, to get pregnant right away and have one more, one whose existence wasn't wrapped in all things dead baby. Never mind how unbelievably terrifying the mere idea of being pregnant again was (and is) to me, I just wanted that other baby. Now, while I still like the idea of Cason having a sibling that is closer to his age (all this loss has created a pretty decent gap between him and his sister and more so his brother) I realize that the real longing is for the one who got away. I won't ever get to be finished because one will always be missing. There is no sense of peace, no feeling of that job well done and certainly no nostalgia about the state of my fertility. Instead there is a feeling that I escaped something, that I got away with something, that I am where I wanted to be but I don't belong there. My outsides don't match my insides anymore. I am a misfit. I am and will always be incomplete.

Sunday, February 22, 2009

The eyes have it

Niobe has an eye catching post up. Here's my answer....sorry about the sad state of my gazers. Went to an all '80's gala last nite and had to break out the purple eyeliner and the ridiculously heavy black mascara to go with all the Aqua Net. But, hey, they bring out the green in my hazel duo dontcha think???

Tuesday, February 17, 2009

Dead babies last forever

"My soul was a burden, bruised and bleeding. It was tired of the man who carried it, but I found no place to set it down to rest. Neither the charm of the countryside nor the sweet scents of a garden could soothe it. It found no peace in song or laughter, none in the company of friends at the table or in the pleasure of love, none even in books or poetry...Where could my heart find refuge from itself? Where could I go, yet leave myself behind?"*

It was serendipitous, stumbling across this quote when I did, just after posting the picture of the tattered and dying rose** that has somehow managed to bear new life from the center of it's withering bud. It answers the question. From somewhere deep within, where no beauty can be seen, the potential for new life waits. What it will look like, the new life, that is the million dollar question. That is the mystery that is grief.
It's hard writing here now. I feel the need to be more careful with my words. To censor thoughts and feelings so as not to wound, albeit without intention, another. I am keenly aware of the divergence of our paths, those of us who have somehow stumbled our way onto the road of life with a live baby after, those who are well on their way to that path and those that are not, some by choice, some by cruel design, some a combination of the two, choice and design. And of course, none of these women got there because they happily decided, "Hey, no more babies for me, I'm done!". And really, for some the decision hasn't even been made by them, but for them and in direct opposition to their wants and hopes and dreams.
The idea that any of us really gets to choose our path is ludicrous isn't it? We all know, or think we know, which path we want, but the reality of it is that we end up on whichever road fate decides and the only real power we have is how we choose to live while we walk. It's not good or bad, it just is what it is.
A year ago today I was at my lowest. It was the end of a cycle, one where we had 'really' tried and still nothing. I had visions of the rest of my life, or at least my ovaries lives, being nothing more than rounds of trying and 2ww's and pissy trips to the store to buy tampons and alcohol, lots of it. I saw myself in DBL watching and reading as slowly each and everyone of the women who I had come to know would become pregnant and get her 'almost happily ever after' baby. I envisioned myself the ancient gatekeeper to DBL, welcoming the new members with my tale of woe, only to them it would be a cautionary tale, the story none of them really wanted to hear because I didn't get my live baby ticket out of Dodge. No one would want to be near me. Or at least they could explain me away by rationalizing that I was afflicted with that "AMA" syndrome, more commonly known as advanced maternal age, which must be why I didn't get the baby. She's all dried up they would say, she waited too long, that won't happen to us....we hope. I imagined it because it was what I did when I read. I tried to find reasons to explain to myself why someone else's tragedy wouldn't befall me IF I got there, you know, pregnant, again. Sometimes it worked, most times it didn't. We all know there are far too many more stories where there just is no reason why it happened than there are ones where we can blame someone or something, anything. And beyond that even, nothing is guaranteed, nothing certain, not when it comes to live babies anyway.
Off I went to the store, bought my industrial size box of tampons, vowing not to have to come back and do the walk of shame month after month, and I dove into a glass of 'make it all go away' when I got home. It was the last month I had to do it. And we all know what happened after that.
Now when I write, I find myself writing to that me. The scared, desperate and hopeless me. The me I was a year ago, not the me I am now. Because I can hear the chorus in my head of the ones who are 'there' when I write otherwise, either in a post or in a comment. "Easy for you to say, YOU have a baby now." "You don't know what it's like anymore, you got out easy." "Don't blow sunshine and glitter into my world, you didn't have it when you were here and you didn't want to hear it either." I can go on and on but there's no need. You get it. And maybe it's not what anyone really feels but it must be close on some level.
I suppose the dbl club is an evolving one with many rooms. We all go in and gather in the front room, our eyes moist, glazed and shell shocked. We cling to each other, fighting for every breath. We talk because finally we have found others who know. Slowly we find comfort, we get comfortable, we move, we explore our new surroundings, we seek out others who have been there longer, we look for ways out or at least other places to go, we gather information, we garner strength and we welcome those who come after hoping to show them the same warmth that we found when we entered. And after a while our stories change, our needs change, our voices change. We all still share that horror of a common bond but now we find ourselves different again, each one of us unique in our grief and our life after. There is a room for each of us to be sure, no one will ever be alone and there is comfort in that.
In a way I think that getting a baby after has inflicted a kind of survivors guilt in me. The feeling that I was a part of the horrific crash that devastated all of us but somehow I walked away less damaged or less entitled to feel damaged because I have a baby now. And in reality, having the baby does make it better. It just does. There. I said it. It doesn't make the grief better but it does make the living with it better. Infinitely better. And that's the part that brings the guilt. And I don't write this as a complaint or a whine or anything of the sort. It's an observation. A feeling. A way of being. For now. Something else I've learned along the way, everything is temporary around here.
Except for the dead babies. They last forever.
*St. Augustine
**See my last post

Saturday, February 14, 2009

Valentines Day Hope

I'm not a fan of roses on Valentines Day and certainly not red roses...way too cliche for me, BUT this one I had to share. It reminds me of me.

Honest Scrap Award

Thanks to the lovely CLC for bestowing upon me this little ditty. I've been held hostage of late by a little volunteering commitment and am way behind on my blogging so I am going to skip the part where I actually choose more blogs to pass this on to as most of you have already had a chance to do this, BUT, if you haven't and you are here reading this, then consider yourself duly nominated!

The rules of the award:1) Choose a minimum of 7 blogs that you find brilliant in content or design.2) Show the 7 winners names and links on your blog, and leave a comment informing them that they were prized with "Honest Scrap." Well, there's no prize, but they can keep the nifty icon.3) List at least 10 honest things about yourself.
1. I love to eat in bed before I go to sleep. Diets be damned.
2. Sometimes after partaking in the aforementioned activity I will, shudder, skip brushing my teeth. Eee gads! I know. But I am obsessive about scrubbing them during the day, to the tune of 5-10 times a day so I figure I make up for it, right?
3. I love playing Puddle of Mudd, 'She hates Me' really loud in my car and always giggle when they get to the chorus. If you don't know it, find it:) and see how immature I really am.
4. In my last 'honest' list making post I wrote about the sad state of my not so sexy underwears. Now I will add the absolutely not sexy decades old sock collection to the list. I tried to clean out the drawer but decided I would have to buy too many pairs to replace what's in there, so I just put the forlorn, faded, and ever so shriveled foot covers back in to their cavernous home. I suspect one day all of the misfit toys will come to rest here too.
5. I will wake the husband out of a sound sleep to get a spider off the ceiling. It sucks for him as I am up ALOT at night these days and I am not always in our room either, so I have seen a good number of arachnids wandering the likes of our overheads and it isn't a safe place for them. Really.
6. I have become addicted to reruns of The West Wing and also replays of Mad Money and Remember the Titans. Why, I have no idea. Late night nursing and plot lines I can follow without too many functioning brain cells would be my guess.
7. I hate when police cars drive behind me. Could be the expired tags but more likely it's the leftover fear of a teenager who drove way too fast, way too often and didn't get caught nearly enough times to make her stop.
8. I am already one month behind with my new year's resolution to read at least one book a month. Which proves to me why resolutions suck. They make me stress out over things I don't need to stress out about and they put way too much pressure on me to do things that I would normally enjoy doing but now feel pressured to do which stresses me out and then I feel pressured....see where this is going.
9. I can't remember the last time my husband and I went out by ourselves. Seriously. Except for doctor visits and hospitals that is and really, that doesn't count now does it?
10. I want another baby. Can't decide if it's really another baby I want or if this is Caleb and the grief coming out, either way I am not going to have another baby so this is a new layer of longing and sadness I am learning to live with.
Somethings never really change do they?