The perfect gift

It was in a blue velvet draw string pouch. I could hear the delicate tinkling of the rattle before I let it fall into my hand.

A simple, sterling silver piece, fashioned as a bracelet almost. With a ball that connects the two ends of the ring.

I held it in my hand and saw on the rounded surface of the ball, Cason's initials engraved, tiny and perfect, just like him.

I started to thank her and she, a dear friend of my mother's who had brought this to me, told me to look closer.

I turned it over in my hand and there, tiny and perfect on the other side, were Caleb's initials.

Instead of saying thank you, I cried in her arms.

Survey Says

A while ago, way back in the early days after I lost Caleb, I came across an article that referenced a survey being done in order to examine the experience of parents(mostly mothers) who had lost a child to stillbirth or neonatal death. The purpose of the survey was to give the medical community, i.e. doctors, nurses, technicians etc., insight into the impact of the loss, not only as a life changing experience, duh, but also what the importance of the actual giving of the diagnosis was/is. Simply put, the author of the study was looking to see how crucial the initial delivery, pardon the pun, of the news was to the grief process. Not just the diagnosis but how it was handled be the news giver, what information should be given, how the information should be dealt with by the provider and other issues related to the first part of the experience for the parents.
Additionally, she, the author, inquires as to the lack of information made available to pregnant parents as to the risk of stillbirth in pregnancy and how that affects the parents who later are on the receiving end of that diagnosis.
I participated in the study, taking the 25 minutes or so to answer her questions with the hope that my voice, my experience with an inept medical group, might one day help another mother escape the same shitty handling I had.
The other night I got an email from the author, asking for some follow up information and asking if I wanted to see the preliminary report. To be honest, I had completely forgotten I had even done it(thank you xa.n.ax) but her email recalled the memory for me. I answered her follow up questions and I asked to see the study. Her results are akin to what we all would have told her. That having a compassionate caregiver, who is willing to discuss, for as long as we need, the death of our baby, makes an enormous difference in how we grieve. Her results are a four page study with sexy graphs and other fancy data but the bottom line is that the medical community needs to reevaluate how they treat mothers, parents, of stillborns and neonatal loss babies.
She is still compiling data for the study as it is still a work in progress so she continues to collect data. Which is where YOU come in.
I offered to post the link to the survey on my blog for her so that she could gather more input from dead baby moms. I know so many of us were treated poorly by the medical people whose duty it was to care for us. Here is an opportunity for all of us to let them know what needs to change and how they need to do better when treating the families who are experiencing the tragedy of the loss of their child.
If you want to participate in the study you can find it HERE. And let others know on your blog too. Link back to me or post the link on your site.
The more of us who speak, the louder our voices become. Maybe they will hear us and actually listen.
A girl can dream, right?

I may look different, but I'm still me.

Not so long ago, I wrote about sailing for another port, about the journey taken from dead baby land through pregnancy and into, as it was, hopefully, motherhood on the other side. Having reached what I thought was a destination, my destination, I now find that really there are no final stops, no place where you disembark. Yes, I arrived, but my pilgrimage continues. While it seemed to me at the time as though I had to choose, stay in the familiar or let go and embrace the unknown, it really was only for the crossing.
Upon reaching my other side, that 'place' we all look to as our ticket out of db land, I was made brutally aware that while I was given a beautiful child, he wasn't a pass off the ship but rather a passenger traveling with me. And as many may have thought or even noted at the time, a part of me would always remain steadfastly in the land of dead babies. There is no 'get out of db land free' card in this place.
And really we're all straddling the horizon, looking back and looking forward, sure of where we have been and so unsure of where it is that we are going.
In some ways I suppose the dead baby mom label has become quite comfortable. As the poem "Shoes" says, some of us will at some point have walked in these shoes for so long that we will go days and they won't even bother us at all. Reading that poem in the early days after losing Caleb, I couldn't imagine ever having a day pass where I wasn't consumed by his loss. But now, they have and they continue to. I don't feel like less of a dead baby mom because of it, I just feel farther removed from the shock of his loss. I have trekked many miles in these shoes and the wear is beginning to show.
I don't know who I would be now if Cason hadn't joined me. I don't know what my grief would look like or feel like. I know many IRL assume that because you get your live baby you must be complete, fixed, all better now. Even my husband said to me recently when I was talking about the goings on in db land, "Well , you can't really call yourself a db mama anymore can you?" He smiled when he said it and I know, having lived with him all these years, that he meant no harm in saying it, but I looked right back at him and asked,"Did Caleb come back to life? Is he here?" That wiped the smile off his face. But if even my husband thought it, him, the father of Caleb, I can only imagine what others who are farther removed from me must think.
I guess to almost anyone, even a fellow dead baby mom, my rights to the whole package of all things db may seem diminished by the live baby. That makes sense, it really does. Not that I am not allowed to grieve for my loss but that I do have something marvelous to cherish now. It has not gone unnoticed by me that not everyone here has gone on to have another baby, some by choice and some by shit awful circumstance. Even here in the world of dead babies, we all travel a different course. Even though we all deny the existence of the 'pain Olympics' it can't go unsaid that truly some of us have a harder load to bear, face a different challenge, bear the weight of different decisions for the future. And yet, we have this one shared thing, this life altering moment, a bond born out of motherhoods cruelest fate and because of it, we walk or sail, together, (choose your metaphor), always.
While I now carry a live baby in my arms, I will always carry my dead baby in my heart. And even though I may look different on the outside, I'm still here, I'm still me.

Scotch & Milk?

He didn't even offer to share...

Jealous?

Just to be clear, Cason does not go in the Moses basket when it is next to the fireplace...although he could since the weather here has been in the high 80's this past week. Ugh. The kitty, well, apparently he doesn't care where the bed is, as long as he is in it and not the squirmy new pet that has taken up residence in said kitty's house.

Speaking of, here he is at 8 weeks. I can't believe it.

Notes from the other side

My coping mechanisms are failing me. The thing that I see now, now that my leprechaun has landed safely, is how much I was denying before. And what I mean by denying is not that I didn't realize that I had a dead baby, but more how much his death and the whole experience of actually delivering a dead baby, would impact me and my life forever. The more time that I spend here in 'live' baby land the more I see that I really was looking at the idea of having another baby as a 'fixer' for all of the things that having had a stillborn broke.

Guess what? Having a baby doesn't fix any of it. They are coupled together and yet they exist independently of each other. But neither experience adds or negates anything to the other one. Cason's birth was marvelous and cleansing and full of light and purity. Laying in the recovery room, him on my chest, surrounded by my family, holding my husbands hand while listening to the joy in my children's voices as they marveled over their new brother, the emotions and feelings that I had at that moment were euphoric. And it wasn't the heavy narcotics. It was love in its purest form. Unencumbered and unfettered it flowed freely and I reveled in it. It was, quite simply,the best moment of my life. And I wanted that moment to be my forever. I wanted those feelings of bliss, of perfectness, of relief and success to stay and inhabit my whole world, leaving no room for any of the other feelings or emotions that had haunted me for the past 14 months. I wanted good to win out over evil. I wanted the good to make the bad go away. I was counting on it, even if I didn't realize it.

Instead, what I have found almost two months out, is that I can recall that moment and cherish it, but it is a memory, it is not a permanent state of being. Rejoining the 'real world' doesn't afford me the luxury of leaving any of who I am behind. All of the loss and its accompaniments come with me. They always will and now I have to learn, all over it seems, how to live with them.


Seeing pregnant women still hurts. Despite having had a 'problem free' subsequent pregnancy myself, I still envy the innocent, shiny happy pregnant woman, because I now know, even if I had 100 more pregnancies that all ended well, they would not begin to erase or minimize the impact of the one that didn't.

The fear of having my world turned upside down at any moment still remains. I feel like all my children have targets on them now. My husband takes the kids out for a bike ride and I am convinced they will get hit by a car. I spend the entire time they are gone listening for sirens, the phone in my hand, my heart pounding, waiting for the call that will bring me the bad news.

Putting the leprechaun down to sleep, terror fills me. Will he wake up, will he keep breathing and not become a SIDS statistic? I want to hide him and my other two from the world forever with the hope that I can protect them from the invisible forces that came into my life and stole away my baby and my sense of security in my world.


Last weekend I went to that mecca of baby stores to pick up a present for my niece who was turning one. I avoided it the whole time I was pg with Cason because the thought of being surrounded by that much in your face "you're having a baby" merchandise made me physically ill. But I thought going now would be ok. It wasn't. It still felt like I was tempting fate. I still felt like a fraud. I didn't belong there with the many shiny, happy pregnant couples. I am not them. I felt like the grim reaper trolling the aisles, the reminder to all of the very bad things that can happen, the one who forces others to shield their eyes and turn away, to deny my existence and run in the opposite direction sure in their belief that it will not happen to them. The one true thing about our paths crossing, the intersection of our worlds being that they are not me and I am not them, for now or anymore, depending on your perspective of course.


I'm angry that even a simple shopping trip still evokes such horrible feelings in me. And on that particular trip, the longer I stayed the harder it got. Choosing outfits and toys for a one year old shouldn't be this hard I thought. Why is it this hard for me still? Why can't this be easy. And as I stood in the middle of the store, slowly sifting through the clothes and trying to pick something that would suit a soon to be walking, precocious one year old, the sudden realization of why it hurt so bad to be in there fell over me, bringing my reality back to me. I should have been shopping for Caleb's first birthday too. My niece and he were supposed to have this birthday, and all of their birthdays together. But it didn't turn out that way. Caleb will never be one or two or anything. He will always be the baby that died. And I can't hide from it anymore. And it isn't him that I am hiding from, it 's the 'it'. The pain, the ache, the missing, the longing for him. That's what I have been hiding from. The fact that I really wanted him, that I really miss having him here and that I hate knowing I will have to spend the rest of my life with these feelings. Because nothing will ever change what happened. Caleb is dead. I never get to see him or touch him or hold him or love him the way he should have been loved. And I hate it.


I spent the first year of his absence trying to fill the void with another baby. It was a hard year and there was grief to be had, tears that were cried and a baby that was missed. But I didn't really let the full impact of being a dead baby mom take hold. I was focused on something else. Now I have to see my whole reality for what it is. For who I am. Dead baby and all. I think somewhere in my mind I thought the grief would be easier to live with and process if I had that live baby. So I pretended that I could put off really looking at it until I had the baby in my arms. That way I would be shielded from the true effect it has had on my life. I existed in different worlds, a schizophrenic existence really and I was able to keep each piece of my broken personality separate pretty successfully. There was the old me, the face I put on for everyone IRL, there was dead baby me who existed in the blog world and there was pregnant me who focused solely on bringing the live baby to fruition. Somehow those separate and distinct personalities existed in a bizarre sort of symbiotic relationship. I functioned and survived my own life by having these distinct places in my head where I could keep my emotions parsed, where my different versions of myself could protect me. I didn't know I was doing it, it wasn't something I planned or contrived. I just did it.

But the act of delivering a live baby has made the managing of these parts of myself impossible. It is time to come to terms with the whole of who I am. I can't pretend that a part of me doesn't exist, it's too hard. I can't pretend that having a dead baby was something I had to get through, an obstacle I had to overcome on my way to having a live baby. And I can't pretend that I am the old me anymore either. I am not her. She is lost to me forever. I may look the same or similar to her but if you look closely in my eyes, you will see the scars, you will see the unmistakable void that tell you I am living my life without my son. And you will see that I am also living my life with my sons and my daughter. It is all in there. I just have to find a way to let it all exist together.

And it will start with me spending what should have been the second year of my sons life, learning to live my life, without him, forever.

VOTE!

Wait the elections are over right? Well, that silly thing about choosing the leader of the free world is, but this election is much more important. Okay, maybe not more important but at least equally, almost.
Mel is up for Best Medical Health Issue Blog award over at the Weblog Awards. Mel, the Stirrup Queen and host of Lost and Found and Bridges. She has done and continues to do so much for this community of loss, life and hope.
A vote for Mel brings us closer to real recognition outside of our quiet world here in dead baby land. It is a chance for people not struggling with our issues to take a real look at who we are and what we live with everyday. In short, voting for Mel puts a face on all of us. And lordy, we all need a face and a voice too.
And here's a beautiful thing: According to the always delightful Tash, we can vote once a day until 1/13/09! That's a lot of talking by the db mafia! So if your reader is low and your looking for a worthwhile way to spend a few seconds, go over and VOTE!!!

News you can use:0)

Our little friend Reese had an unexpected, well she was expected but not until next week, arrival. Hop on over and help her welcome in the new little Radha!!

Way to go Reese!!

Thinking of Sue

I've been reading with Sue about the painful days of last year. She went through so much, she was so brave and still her sweet boys are gone. If you have a moment, please stop by and give her some love and support, I know she needs it. She is telling the day by day journey that she and C., and her family endured. It is heartbreaking and frustrating and I can only imagine the heaviness of her heart as she recalls those days of anguish.

I'm thinking of you Sue.


xxoo

New beginnings...and happy endings.

I rarely go back and read my old posts. I'm not that brave. I think it's mostly because I don't want to remember how I felt. I'm afraid of those feelings. Even though I was the one feeling them and I have already lived through the days I wrote about, I just can't put myself back there. They were the darkest days, the worst days of my life...so far, ever, I hope.
As much as I like to pretend that I have dealt with all of the bad shit, I know I haven't. I know I skated. I kept myself busy, I spent alot of time pretending I was 'ok', to the outside world. It's a fabulous coping mechanism, really, if you don't mind sequestering the biggest parts of your self and then putting on a show, 24/7 for like, ever.
Truth be told, it's exhausting. I found that alcohol helped with the tiredness, at least at night when the tiredness seemed to evaporate and sleeplessness would take up residence instead. And really the tiredness isn't a sleepy kind of tired anyway. It's more of a physical and emotional tiredness that makes your body feel as though it weighs a ton and makes the idea of being around people for any length of time seem about as appealing as cleaning locker room toilets with your bare hands.
I remember going to lunch with my sister(hi sis) in January after taking my poor dead cat's body to be cremated and just hanging out and laughing. It was the first time I actually felt good being out, which considering the events of that day, you know, the dead cat, you'd think I would have fallen apart altogether. I had only recently shared the existence of my blog with her and so we were able to talk about it, something I never could do IRL since no one else knew about it. I remember her saying how she would never know how to keep a blog or what to write, except, "Woke up, got drunk again." and the way the words tumbled out of her mouth, the tone, the tenor of those words, it just tickled me and I started to laugh, a real from down in the gut laugh that made my eyes water and my sides hurt and I kept laughing long after she and I had said our good byes that afternoon. And it made me both happy and sad. Happy that I could still laugh like that, that I could still feel like that and sad that those feelings would forever come as a surprise to me now, given that they were buried so far beneath the heavier more omnipresent feelings of grief and isolation.
I guess the sudden awareness of the total compartmentalization of my emotions hadn't really occurred to me until then. I hadn't even realized how much effort I was putting into 'being me', into proving to everyone that I was 'fine'.
But here, in the blogosphere, I didn't have to do that. I could just be. I could write and spill what ever thoughts or feelings I was having. I didn't have to censor myself. And I didn't. Which returns me to my point. I rarely go back to see what I wrote, because I don't want to remember the feelings. Tonight, NYE, I made an exception. I went back to see where I was a year ago, to see what's changed.
Alot.
Obviously.
Okay, to be totally honest, I didn't read the whole post because it's about my son and his release of a whole ton of his grief and in keeping with my proven coping skills, I can't read it because I don't want to remember how fucking awful that was either.
But I did read the rest. This is what I read.
It was a year ago that I started to hope. Not just for the laughter that I would share with my sister, but for a new baby. The quintessential dream of a db mom. And so it was that we spent most of 2008 trying to bring that hope to life. As did most everyone here in DB land.
It wasn't easy. Not any of it. The trying, the failing, the trying again, the tests, the days it all seemed so all consuming, probably because it was, and then it happened. And it was nine months of pins and needles, of hopes and fears, of denial and reality all colliding, spinning wildly out of control and any attempts at managing it were futile. I spent the greater part of 2008 with my head in the sand, not only suppressing the db stuff but also the pg stuff. More and more of my life had become so overwhelmingly emotionally oppressive that I now pretty much ignored about 95% of my own existence. The result of which, besides my slipping mental health, lots more of those real fancy gray hairs we all love so much. Sigh.
BUT.
He's here now.
A year ago, I don't think, no I know, I would not have believed me or anyone else, if they had told me that I would have a new baby in my life come NYE 2008.
And I would have been wrong. Now he lays sleeping on my bed, making quiet cooing noises as his tiny hand flutters every once in a while, waving at some vision in his head perhaps. And better still, as of yesterday, well actually now two days ago, when he is awake, he will smile at me. A big toothless, all lips and eyes, smile. And if he really wiggles and kicks and waves his arms, he will even let loose the tiniest of baby words, surprising even himself, so much so that he immediately silences himself so that he can hear himself better, only to become frustrated that the sounds stopped. And all the while, I sit, mesmerized and tearful, that I got this miracle. That this tiny creature has fallen into my life. That the quiet hopes of a broken heart somehow led to this life. Words can never tell the whole story of him, at least not words I know.
2008 was a hard year. And it was a year of hope and miracles. And it was a year I will never forget. Not ever.
And now as I sit in the early morning hours of this new year, I wonder what 2009 will bring. I have new hopes for this year. Hopes for my 3 living children to be healthy and happy. Hopes for my heart to continue to heal. Hopes for more laughter than tears this year. And hopes for many healthy babies to be born to my friends here in this place. Hopes that 2009 will bring to them what 2008 brought to me and and to Ashleigh and to Julia and to Sarah...and many more.
I know there are no guarantees, but I have to hope.
And so I will.
Happy New Year to all of you. I hope it brings you all a new beginning and of course, a happy ending.