I asked my husband the other day if he felt like he was losing Peyton. He nodded. I admitted that I felt it, too.
Peyton hasn't been replaced. She hasn't been overlooked, or intentionally forgotten, or fallen in any way down the rungs of love in our heart, and yet my husband and I, two parents who think of her multiple times a day, have felt our memories of her slipping further out of reach.
We started talking about the memories that we hadn't lost. The sweet, minty smell of her. How she let out a little kitten-like sigh when she would lift her head to readjust against my chest. I mentioned her hands, how they were exactly like my mother's but on a tiny scale, and how her entire life there was goo on her knuckles and a bruise on the back of her hand from that very first IV.
We talked about the emotions that follow us along certain drives--the drives down the roads away from our house on the way to and from the hospital. I remember in crisp detail what life was like the day before the fungal infection was discovered. How full of hope we felt. I remember conversations about the Fall, and stopping at Dunkin Donuts on our way to see her that first time. If I close my eyes, I can probably replay every moment of Peyton's short life in my mind.
My husband shared his memories, too. He said he didn't think that his were as crisp as mine--something he attributes to the fact that he didn't see Peyton's death coming. I saw it coming. I didn't want to, and wouldn't have admitted it even to myself at the time, but I did. In my heart of hearts, I knew she wouldn't survive and I am disgusted by that.
I started to say that I thought the reason we felt like we were losing the details of our daughter, Peyton, was a self-preservation thing--because to stay there, in that dark, early, abyss of grief would be so crushing we couldn't possibly survive. I do think to some degree that that's true, but as I was saying it to him, it hit me. My memories of Peyton aren't numbing or disappearing, so how can I say that I am losing her when every detail, every-single-detail of her tiny life, is burned into my brain?
No, it's not that I am losing her. It's that now that I have had other children, healthy children, growing and changing and doing-by-the-day children - the magnitude of just how brief, just how robbed, just how un-lived a life my first child had-- it's overwhelming. I only have so many memories of Peyton, because there only are so many memories of Peyton. Twenty-eight days of life is not enough.
Showing posts with label ptsd. Show all posts
Showing posts with label ptsd. Show all posts
Thursday, March 29, 2012
Wednesday, February 29, 2012
Triggers don't care...
Triggers don't care...
that you are having a good a great a fantastic day...
that you spent the last two hours laughing with your children...
that your outlook on life is generally a happy one...
that you have come so far in your healing...
that you have spent thousands of dollars and hundreds of hours in therapy working through each and every painful memory so as to dull the pain of them...
that you have accepted that she is never coming back...
that you have finally, finally realized that missing your child doesn't negate your right to be happy.
Triggers don't care...
they are rude...
and inconsiderate...
they shine a spotlight on your darkest memories...
pour salt in your wounds.
Triggers are the uninvited guests at a dinner party who demand control of the floor.
They are the background music of a neighbor that you can't shut off, but have to learn to live with.
Triggers are powerful, but guess what?
So are you.
When they come calling remind yourself that you are more than those memories.
You are more than that pain.
Your loss is not all that defines you.
Close your eyes, take a deep breath, and recognize that this feeling, this heart-stopping nauseating feeling will inevitably pass.
Your smile will return once again.
that you are having a
that you spent the last two hours laughing with your children...
that your outlook on life is generally a happy one...
that you have come so far in your healing...
that you have spent thousands of dollars and hundreds of hours in therapy working through each and every painful memory so as to dull the pain of them...
that you have accepted that she is never coming back...
that you have finally, finally realized that missing your child doesn't negate your right to be happy.
Triggers don't care...
they are rude...
and inconsiderate...
they shine a spotlight on your darkest memories...
pour salt in your wounds.
Triggers are the uninvited guests at a dinner party who demand control of the floor.
They are the background music of a neighbor that you can't shut off, but have to learn to live with.
Triggers are powerful, but guess what?
So are you.
When they come calling remind yourself that you are more than those memories.
You are more than that pain.
Your loss is not all that defines you.
Close your eyes, take a deep breath, and recognize that this feeling, this heart-stopping nauseating feeling will inevitably pass.
Your smile will return once again.
Thursday, December 1, 2011
Pressing Pause While Flashing Back
I participate in a weekly critique group. It is a wonderful, blissful two hour block of time devoted to writing, and I love it. We meet in the evening, and usually run late, so I tend to go to bed thinking about the feedback I received, and then stay in the same train of thought as I wake overnight to feed the babies.
The other night, when the snowflakes woke me at around 4AM, I started thinking about words. Which words are the right words to convey what I am trying to say. Which words have the strongest impact on imagery etc. etc. For some reason I got caught up on the word "doorknob" of all things, and before I knew it, I was holding tight in my mind a clear picture of the doorknob to a family suite that I used to pump in at the NICU.
PTSD is funny that way. You really never know what is going to trigger you.
When I look back on the fact that we only actually spent 8 days in the NICU before Peyton was transferred to the oncology floor, it is so hard to believe, because those 8 days felt like a lifetime. Those days, despite the fact that Peyton had been diagnosed with such an awful disease, represented the best of times that we would share with her.
8 hopeful days.
8 days of believing naively that she would make it.
8 days spent surrounded by supportive staff who encouraged things like skin-to-skin time to improve her bloodcounts, and breastfeeding.
I am not knocking the care we got on the oncology floor, but there was a different level of attention that we received in the NICU as parents. A level that now, in retrospect, I realize must come from working in a place where you see so many parents come in with their children, and leave without them.
As my mind wandered from the doorknob, into the suite, I could see myself, and feel it like I was actually there. I couldn’t tell you if it was day 4 or day 5, but I had gone in to pump while Peyton napped.
I was pumping, for my child.
A small TV against the wall was showing an interview with Mariska Hargitay. She was talking about her career, and life growing up as Jayne Mansfield’s daughter.
I won’t even attempt to try and understand why I remember that interview. I have come to realize that little about PTSD makes sense.
When I finished pumping, I walked over to a sink in the room and cleaned the bottle parts, careful to do so in the most sanitary way so as to protect my immuno-compromised child. My husband was at the lunch cart, buying us a snack.
I remembered it.
Smelled it.
Felt it.
I knew I was flashing back, and yet I chose to stay in that moment. To hold onto it. Despite the worry and the exhaustion, I was hopeful in that moment. I was making milk for my child who (I believed at that time) would need it. I was gearing myself up for the long haul. This was going to be my new life – living in a hospital rather than home with my first child – but I had accepted it.
There is another memory that comes right after that one. It is not a pleasant memory. It is the moment where my hopes were dashed some five minutes later and down the hall, but I pushed that memory away, and chose instead to hold onto the moment that had come calling for me.
Usually flashbacks make me want to run. There are more moments than I can count that are so painful that I can’t write them. The only post I have ever taken down from this blog was when I shared just such a moment. I took it down because it hurt more to have it out there than to not.
But not this moment. In this moment I was too naïve to recognize that the battle had already been lost. That she was born destined to die. That there had never been any hope. In this moment, this memory, I was just a mother, doing my best to make milk for my child, and looking forward to her waking from a nap so I could hold her again. In the entire span of Peyton's short life, this was as good as our time together ever got to be.
Remembering doesn't change anything. We still lost Peyton. She won't come back. But the flame of hope that burned that day, and the feelings of love I felt for my first child, are not to be forgotten. I choose to cup that moment gently in my hands and fan it from time to time, so as to feel its warmth against my skin. To watch the beauty in that ember glow.
Tuesday, July 19, 2011
"Nightmare"
I had a nightmare.
Anyone who has read here for a while will understand.
I dreamt I was walking along a concrete path, and everywhere I turned, I was met with one of those little yellow lawn pesticide signs.
The grass all around me was coated in a white, powdery film. I walked carefully and held my hands close to my body, not wanting to touch anything.
The chemicals were everywhere. I was a rat in a maze, turning and turning, looking for a safe way out.
Suddenly I came upon a large festival full of families walking through the grass like it was no big deal.
Young children rolled around and played in the lawn and I felt nauseated watching as the white powder took refuge on their bare skin.
"You have to get that off of them!" I screamed.
No response.
"Don't you know pesticides are linked to leukemia!"
Not even a look in my direction.
"Why aren't you listening? Your children could die!"
Nothing.
The families just went on smiling and celebrating.
Rolling around in the grass as white powder coated their bodies.
Picnicking as it stuck to the food that they brought to their mouths.
"Please listen." I begged.
But no one did.
They couldn't hear me.
They lived in a different world.
Naive.
Unaware.
Together.
I realized in that moment that I knew too much to ever be like them.
I realized that no matter which direction I traveled, I would always be alone.
**
I am really excited/humbled/honored/stoked/etc etc to learn that my little ole blog here has been nominated for Babble's Top 50 Mom Blogs. It would mean A LOT to me if you all would take a moment to vote for my blog by clicking here. If you sort by popularity I should be on about page 2. If you sort alphabetically I fall around page 13. You can vote for as many bloggers as you'd like. I did. Some of my favorites are also on the list :)
Anyone who has read here for a while will understand.
I dreamt I was walking along a concrete path, and everywhere I turned, I was met with one of those little yellow lawn pesticide signs.
The grass all around me was coated in a white, powdery film. I walked carefully and held my hands close to my body, not wanting to touch anything.
The chemicals were everywhere. I was a rat in a maze, turning and turning, looking for a safe way out.
Suddenly I came upon a large festival full of families walking through the grass like it was no big deal.
Young children rolled around and played in the lawn and I felt nauseated watching as the white powder took refuge on their bare skin.
"You have to get that off of them!" I screamed.
No response.
"Don't you know pesticides are linked to leukemia!"
Not even a look in my direction.
"Why aren't you listening? Your children could die!"
Nothing.
The families just went on smiling and celebrating.
Rolling around in the grass as white powder coated their bodies.
Picnicking as it stuck to the food that they brought to their mouths.
"Please listen." I begged.
But no one did.
They couldn't hear me.
They lived in a different world.
Naive.
Unaware.
Together.
I realized in that moment that I knew too much to ever be like them.
I realized that no matter which direction I traveled, I would always be alone.
**
I am really excited/humbled/honored/stoked/etc etc to learn that my little ole blog here has been nominated for Babble's Top 50 Mom Blogs. It would mean A LOT to me if you all would take a moment to vote for my blog by clicking here. If you sort by popularity I should be on about page 2. If you sort alphabetically I fall around page 13. You can vote for as many bloggers as you'd like. I did. Some of my favorites are also on the list :)
Friday, February 4, 2011
When you want to cross that bridge...
I had a nightmare last night.
I dreamt that I came up to a very long bridge over water (think miles long) with my husband. In my dream I referred to it as the Brooklyn Bridge, but it wasn't actually that bridge. Anyway, I wanted to cross the bridge but I was scared. The bridge felt too long, and impossible to conquer. My hubs told me to just do it. He said that he would be running alongside me and he would tell me as I was getting close to the other side. I hemmed and hawed for a while, before finally getting up the guts to give it a go.
I started across the bridge, and he was yelling things like "you're a tenth of the way there, keep going." All of the sudden it became very windy out, and the bridge had no guardrails holding me in from the sea below. Up ahead of me I could see something crossing the bridge and I screamed when I realized it was water. "I'm scared." I cried, "I can't. I don't want to!" But hubs stayed on my heels, pushing me and pushing me and all the while I was terrified.
I told my hubs it wasn't safe, that I had to turn around, and when I went to head back to "safety," I saw that that area I had already crossed was becoming covered with water too. I ran as fast as I could, which wasn't very fast because I was wearing the pink CROCS that I always wear to my doctors appointments (what can I say, they still fit) and they were hindering my speed. The water levels both in front of me, and behind me, were rising. I was panicking. How was I going to get off this bridge?
I passed by someone who had been swept into the sea. I'd like to say that I stopped to help them, but that would be a lie. I wanted to help them, but I was too scared. I was in fight or flight mode. I needed to survive.
The water smelled terrible and I worried about what was in it as it soaked my feet through my CROCS.
When I finally made it off the bridge, I was met with an overpass covered in graffiti. The words that were scrawled on the wall were all scary pregnancy related words, like pre-eclampsia. I bent over to catch my breath and hubs came up beside me.
"You should have kept going," he said, unable to even look at me. "You were practically there."
I felt like a complete failure.
I could give you my own interpretation of what this dream means, but who knows how close I would really be. Despite his role in this dream, my hubs has been nothing but supportive our entire marriage, so please don't get the wrong impression.
I know that when I woke up from it, I instinctively felt between my legs, wondering if my water had broken. Realizing it hadn't, I breathed a sigh of relief and tried to go back to bed, but I couldn't.
The fear had me.
I am scared of giving birth. Not of the actual act of "giving birth," per say, I couldn't really care less about what pain I might endure during a vaginal delivery, and I have already been through a c-section so I sort of know what to expect. No, what I am scared of is actually being able to do it.
Of actually being able to bring living children into this world.
I am scared of giving birth, because I have never done that well.
I have never done it and had a good outcome.
The very worst day of my life, as ashamed as I am to admit this, was the day I gave birth to Peyton. She was taken from my body, then from the room, and by the time I first saw her, doctors were telling me that she would in all likelihood die. To describe the event of Peyton's birth as traumatic, would be an incredible understatement.
What should have been my happiest moment, was one of grief, and panic, and fear instead.
I have spent a great deal of this pregnancy worrying about getting the babies to viability, then to safety, but now, with the carrot of their arrival dangling so closely before my nose, it is hitting me - some way or another, whether vaginally or by c-section, I am going to have to "give birth" to these babies, and I am terrified.
I try over and over to picture a positive birthing experience in my mind.
I try to see them coming into the world, and being declared healthy, and handed over to me.
I try to envision them at my breast, the gratitude I will feel for their safe arrival, and the tears of joy that I know will be streaming down both my face, and that of my hubs.
I try to envision this, but sometimes the fear creeps in instead.
I wish pregnancy didn't have to be this way for any of us loss mommas. I wish that we could be happy and innocent and naive again, because I am looking down the span of this long bridge before me, wanting so badly to feel confident in my ability to get to the other side... wanting to so badly... but not.
I dreamt that I came up to a very long bridge over water (think miles long) with my husband. In my dream I referred to it as the Brooklyn Bridge, but it wasn't actually that bridge. Anyway, I wanted to cross the bridge but I was scared. The bridge felt too long, and impossible to conquer. My hubs told me to just do it. He said that he would be running alongside me and he would tell me as I was getting close to the other side. I hemmed and hawed for a while, before finally getting up the guts to give it a go.
I started across the bridge, and he was yelling things like "you're a tenth of the way there, keep going." All of the sudden it became very windy out, and the bridge had no guardrails holding me in from the sea below. Up ahead of me I could see something crossing the bridge and I screamed when I realized it was water. "I'm scared." I cried, "I can't. I don't want to!" But hubs stayed on my heels, pushing me and pushing me and all the while I was terrified.
I told my hubs it wasn't safe, that I had to turn around, and when I went to head back to "safety," I saw that that area I had already crossed was becoming covered with water too. I ran as fast as I could, which wasn't very fast because I was wearing the pink CROCS that I always wear to my doctors appointments (what can I say, they still fit) and they were hindering my speed. The water levels both in front of me, and behind me, were rising. I was panicking. How was I going to get off this bridge?
I passed by someone who had been swept into the sea. I'd like to say that I stopped to help them, but that would be a lie. I wanted to help them, but I was too scared. I was in fight or flight mode. I needed to survive.
The water smelled terrible and I worried about what was in it as it soaked my feet through my CROCS.
When I finally made it off the bridge, I was met with an overpass covered in graffiti. The words that were scrawled on the wall were all scary pregnancy related words, like pre-eclampsia. I bent over to catch my breath and hubs came up beside me.
"You should have kept going," he said, unable to even look at me. "You were practically there."
I felt like a complete failure.
I could give you my own interpretation of what this dream means, but who knows how close I would really be. Despite his role in this dream, my hubs has been nothing but supportive our entire marriage, so please don't get the wrong impression.
I know that when I woke up from it, I instinctively felt between my legs, wondering if my water had broken. Realizing it hadn't, I breathed a sigh of relief and tried to go back to bed, but I couldn't.
The fear had me.
I am scared of giving birth. Not of the actual act of "giving birth," per say, I couldn't really care less about what pain I might endure during a vaginal delivery, and I have already been through a c-section so I sort of know what to expect. No, what I am scared of is actually being able to do it.
Of actually being able to bring living children into this world.
I am scared of giving birth, because I have never done that well.
I have never done it and had a good outcome.
The very worst day of my life, as ashamed as I am to admit this, was the day I gave birth to Peyton. She was taken from my body, then from the room, and by the time I first saw her, doctors were telling me that she would in all likelihood die. To describe the event of Peyton's birth as traumatic, would be an incredible understatement.
What should have been my happiest moment, was one of grief, and panic, and fear instead.
I have spent a great deal of this pregnancy worrying about getting the babies to viability, then to safety, but now, with the carrot of their arrival dangling so closely before my nose, it is hitting me - some way or another, whether vaginally or by c-section, I am going to have to "give birth" to these babies, and I am terrified.
I try over and over to picture a positive birthing experience in my mind.
I try to see them coming into the world, and being declared healthy, and handed over to me.
I try to envision them at my breast, the gratitude I will feel for their safe arrival, and the tears of joy that I know will be streaming down both my face, and that of my hubs.
I try to envision this, but sometimes the fear creeps in instead.
I wish pregnancy didn't have to be this way for any of us loss mommas. I wish that we could be happy and innocent and naive again, because I am looking down the span of this long bridge before me, wanting so badly to feel confident in my ability to get to the other side... wanting to so badly... but not.
Tuesday, November 2, 2010
I am blessed. I am burdened.
Every once in a while I get a note, an email, or a comment from someone expressing concern that in missing my daughter, I am not focusing enough on the blessings that are these little snowflakes, or that if I focused more on the blessings that they are, it would make missing Peyton somehow become easier. I don't begrudge the comments, they are always well meaning and said with love. It's just that to me, the thought of focusing on your blessings not your grief sort of oversimplifies what it is to be in a high risk pregnancy after a traumatic infant loss.
Amongst the rays of joy and sunshine, my grief thrives, and deep down I know it always will to some degree. How can I not grieve when a part of me, the first life born of the love between my husband and myself, will never be here with us? Her loss has cut through me at an organic level. It has altered the very core of my being.
A wound like that is chronic. It may lay dormant at times, hidden beneath the surface of our smiles, but the pain at losing Peyton, in the manner in which we lost her, will always be there, and reminders of what we don't have, will always be evident.
I was coming home from the cardiologists office the other day (I have been having some cardiac issues this pregnancy too, but will go into that on another post) and passed a woman on the street pushing a twin stroller with two 18 month-ish children in it. Beside her, a girl who appeared a few years older, pushed a stroller of her own with a doll inside. The mother waved, and smiled, and I waved, and smiled, but it hurt like a dagger through my heart.
THAT was what should have been.
My daughter should be here, trying to make whatever sense she can in her own toddler way of my ever growing belly. She should be that little girl in a year and half's time, walking alongside her momma and siblings, pushing a doll down the street. There are so many things that should be with Peyton, but they won't and never will be, and that hurts.
I can accept that she is never coming back. I can accept that for all of my life I will struggle answering "how many children do you have" or wonder what she would have looked like at a particular stage in her life. What I can't accept is what I can't understand - that for reasons that have still never offered any answers, two perfectly healthy people made a cancer ridden child, and a month of suffering was the only life she ever knew. I do my best to hold onto the beauty - the memories of holding her, how she smelled, the touch of her cheek against my chest, but I will never understand why she is no longer with us. Why part of me is no longer with us. Why my husband and I will never again be "whole."
That's not to say, of course, that we can't live a life of joy. It's just to say that a life of pure joy is not possible.
We have seen too much.
Lost too much.
Cried too much.
I experience joy daily from the love of my husband, my family, my friends. The reassuring nuzzle of my dog Charlotte against my side. Each bout of morning sickness, though it taxes me physically, that offers a sign that things are moving along as they should be.
I look for joy and blessings in the every day - but I am only human.
I have found it impossible to experience so much loss - to carry a child I believed was healthy and discover at birth that she would most likely not survive; to try to live with making end of life care decisions that come to haunt me daily about that child who I so wanted, planned for, and loved; to have to bury that child, and then just get over it, or sugar coat it beneath life's other blessings.
I know that there are many who have had it worse than me, and remind myself of this every day, but somehow that just doesn't make this journey any easier to take.
Most days I wake up and I feel content - not whole, I will never feel whole, but content. On other days I am paralyzed by the fear of possibly re-living the nightmare that has been the last few years. Scared mostly by the knowledge that I got through by the skin of my teeth the first time.
Right after Peyton died, a friend told me that people would be looking to me as an example of strength. This friend has since all but vanished, and I have felt in my heart that it is because I didn't live up that expectation. I wasn't strong through Peyton's death, I didn't and still don't know how to be. The best I have been able to offer is honesty - my weakness and vulnerability exposed every step of the way.
In my current journey, the one of walking the tightrope between bereaved mother and expectant mother, I follow much the same path. Most days I feel confident that all will work out, but on others words like pre-term labor, infant loss, high risk, and leukemia come banging down my door, and when they do, all I can do is hold on tight waiting for that storm to pass.
There are certain African cultures where young boys are sent out into the woods to hunt at night as a right of passage. Some of these boys, too, struggle to be brave. Some of them find that they, like me, are not "examples of strength" but walking into that dark jungle is what they have been called to do, so they go out and try none the less.
Fears surround them - of the dark, of what lurks in the shadows, of the stories of other young hunters encountering wild beasts that over power them. They are sent into these woods with a spear and a message - a token of advice from the elders to get them through. "Yes these terrible things can happen in the jungle, but that doesn't have to be your story."
I think of these boys on the really tough days. The days full of guilt and grief and fear and I remind myself that yes I lost my first child with no warning and no answers and yes I am scared it could happen again, but even though Peyton's birth story and life were tragic, and will always stay with me, that DOESN'T HAVE TO BE the snowflake's story.
I repeat this message to myself until it starts to feel true, and when it finally does, I pick up my spear, and my gratitude, and push forward through the jungle once again.
Amongst the rays of joy and sunshine, my grief thrives, and deep down I know it always will to some degree. How can I not grieve when a part of me, the first life born of the love between my husband and myself, will never be here with us? Her loss has cut through me at an organic level. It has altered the very core of my being.
A wound like that is chronic. It may lay dormant at times, hidden beneath the surface of our smiles, but the pain at losing Peyton, in the manner in which we lost her, will always be there, and reminders of what we don't have, will always be evident.
I was coming home from the cardiologists office the other day (I have been having some cardiac issues this pregnancy too, but will go into that on another post) and passed a woman on the street pushing a twin stroller with two 18 month-ish children in it. Beside her, a girl who appeared a few years older, pushed a stroller of her own with a doll inside. The mother waved, and smiled, and I waved, and smiled, but it hurt like a dagger through my heart.
THAT was what should have been.
My daughter should be here, trying to make whatever sense she can in her own toddler way of my ever growing belly. She should be that little girl in a year and half's time, walking alongside her momma and siblings, pushing a doll down the street. There are so many things that should be with Peyton, but they won't and never will be, and that hurts.
I can accept that she is never coming back. I can accept that for all of my life I will struggle answering "how many children do you have" or wonder what she would have looked like at a particular stage in her life. What I can't accept is what I can't understand - that for reasons that have still never offered any answers, two perfectly healthy people made a cancer ridden child, and a month of suffering was the only life she ever knew. I do my best to hold onto the beauty - the memories of holding her, how she smelled, the touch of her cheek against my chest, but I will never understand why she is no longer with us. Why part of me is no longer with us. Why my husband and I will never again be "whole."
That's not to say, of course, that we can't live a life of joy. It's just to say that a life of pure joy is not possible.
We have seen too much.
Lost too much.
Cried too much.
I experience joy daily from the love of my husband, my family, my friends. The reassuring nuzzle of my dog Charlotte against my side. Each bout of morning sickness, though it taxes me physically, that offers a sign that things are moving along as they should be.
Each day I offer gratitude for these babies. After hearing the words, "you will never again have children" I know full well that each kick is a grand accomplishment, and every punch or jab is a reassuring gesture of love that all will be okay. I rarely allow myself to dwell on all the reasons that have me on bed rest, or the scary complications they can bring, and instead tell myself that in four months time, God willing, these little snowflakes will be born into this world healthy and whole, and another level of healing in my heart can begin.
A level of healing. Not a cure. There is no cure that can undo what has happened to our sweet Peyton.
I look for joy and blessings in the every day - but I am only human.
I have found it impossible to experience so much loss - to carry a child I believed was healthy and discover at birth that she would most likely not survive; to try to live with making end of life care decisions that come to haunt me daily about that child who I so wanted, planned for, and loved; to have to bury that child, and then just get over it, or sugar coat it beneath life's other blessings.
I know that there are many who have had it worse than me, and remind myself of this every day, but somehow that just doesn't make this journey any easier to take.
Most days I wake up and I feel content - not whole, I will never feel whole, but content. On other days I am paralyzed by the fear of possibly re-living the nightmare that has been the last few years. Scared mostly by the knowledge that I got through by the skin of my teeth the first time.
Right after Peyton died, a friend told me that people would be looking to me as an example of strength. This friend has since all but vanished, and I have felt in my heart that it is because I didn't live up that expectation. I wasn't strong through Peyton's death, I didn't and still don't know how to be. The best I have been able to offer is honesty - my weakness and vulnerability exposed every step of the way.
In my current journey, the one of walking the tightrope between bereaved mother and expectant mother, I follow much the same path. Most days I feel confident that all will work out, but on others words like pre-term labor, infant loss, high risk, and leukemia come banging down my door, and when they do, all I can do is hold on tight waiting for that storm to pass.
There are certain African cultures where young boys are sent out into the woods to hunt at night as a right of passage. Some of these boys, too, struggle to be brave. Some of them find that they, like me, are not "examples of strength" but walking into that dark jungle is what they have been called to do, so they go out and try none the less.
Fears surround them - of the dark, of what lurks in the shadows, of the stories of other young hunters encountering wild beasts that over power them. They are sent into these woods with a spear and a message - a token of advice from the elders to get them through. "Yes these terrible things can happen in the jungle, but that doesn't have to be your story."
I think of these boys on the really tough days. The days full of guilt and grief and fear and I remind myself that yes I lost my first child with no warning and no answers and yes I am scared it could happen again, but even though Peyton's birth story and life were tragic, and will always stay with me, that DOESN'T HAVE TO BE the snowflake's story.
I repeat this message to myself until it starts to feel true, and when it finally does, I pick up my spear, and my gratitude, and push forward through the jungle once again.
Friday, October 1, 2010
Two Years Ago Today - In Flashbacks
Two years ago today, the fungal infection from the chemo had spread, and you, my perfect pink little Peyton, looked bruised and battered, tired and old.
Two years ago today, Daddy held you in his arms calling you his "Little Sugie Sugie", and we joked through the tears about who had lost more hair over the previous month, Daddy to stress, or you to chemo.
Two years ago today, I saw a group of doctors in the hallway. And then your social worker Mary appeared looking concerned, and I knew bad news was to come.
Two years ago today, more white coats than I could count shuffled into your room. They told us about a plum sized mass that they found in your brain, and I wondered how that could be possible when you showed no signs outwardly.
Two years ago today, you stayed awake with us for hours, staring deeply into our eyes. This was the greatest gift you ever gave us - these moments of bonding with us one last time.
Two years ago today, I received a prayer shawl with a prayer to Our Lady of Mt. Carmel in it from my boss. The note said it was "never known to fail," and I wrapped you in the shawl, praying and rocking and crying and begging in a way that was desperate and pleading and manic all at once.
Two years ago today, the look in your eyes told us not to worry. We believed in you, our little prize fighter. That you would pull through, and be that 1%.
Two years ago today, you stared past me at the wall, to an area where a red painting from your cousin Emily was hanging just over my shoulder.
Two years ago today, the neurosurgeon told us not to worry. He assured us the mass was not affecting anything, and that in two days, on that Friday, it would be easily removed.
Two years ago today, we felt hope and promise about your infection. The surgery the day before had been successful, or so they told us. It still makes me ill knowing what chemo did to you.
Two years ago today, you tried one last time to root. And I told nurse J that you were hungry, and she in turn broke my heart. She said you didn't know what you wanted. That you were only rooting because it came naturally, and that feeding you was impossible because of the blackness that had spread to the roof of your mouth. I am so sorry baby girl. I had no idea it was to be our last chance together in this life for that.
Two years ago today, I still held out hope for your future. I continued to pump and store milk, believing my antibodies delivered through your feeding tube would help you get well and be strong.
Two years ago today, you had come through your first white blood cell transplant with flying colors. We had been up with you all night the night before, hadn't changed in days, and were exhausted.
Two years ago today, the greatest regret of my entire life. At the nurse's urging and reassurance we left you at the hospital around 10PM, to rest up for the two long days of surgery you had scheduled ahead.
Two years ago today, your favorite Nurse Katie and the doctor on call spent all night with you having a "girl's party." I learned about this weeks later, in a handwritten Papyrus condolence card.
Two years ago today, your last night on earth before dying. I had no idea what I would have to do the next day, or how even years later, I would still be struggling to live with it.
Two years ago today, I didn't know yet what it was to hold my dead child. I didn't know how small you would look in your casket, or how permanent your absence from our lives would be.
Two years ago today, we listened to John Legend on the ride home. He asked "where did my baby go," the cruelness of this foreshadow still unknown to us.
Two years ago today, I wasn't that woman who cries out for you on a hilltop. I had never clutched the earth wanting to dig and get my child back, or cursed God for what he had done.
Two years ago today, I went home to rest still believing - that God and prayers and miracles could save you, holding onto my last bit of innocence.
Two years ago today, I still roamed this earth complete. I have since learned to walk on once again, but it is with the limp and struggle of an amputee, adjusting to a new awkward stride while never again feeling fully whole.
Someday it will be five years, and ten, and then fifty, and even then every moment of your life, every decision, every everything, will remain as clear in my mind, as burned into the core of my being, as it was when it happened two years ago.
I miss you baby girl. I am so sorry I didn't see it coming. If I could go back I wouldn't have put you down for even a second.
If I had just seen what was coming, two years ago today.
If I had just seen what was coming, two years ago today.
Wednesday, January 27, 2010
On PTSD, Therapy, Questioning and PAGL
It's no secret to anyone who reads this blog that I go to therapy. Losing Peyton was really hard on me, not just the trauma of having a sick child, or the trauma of watching her suffer. Not just the trauma of making very tough decisions, or the trauma of watching how they played out. Not just the trauma of losing my child, or the trauma of watching her struggle and die in my arms. All of it. The guilt, the grief, the anger, the questioning, the loss of my sense of self, the PTSD, the depression, the insomnia. All of it came down like a house of cards over the month of Peyton's life, and death, and I feel grateful to have recognized that it was too much for me to do on my own. I am not advocating for therapy, I just know that for me, it was the right decision.
I speak with a woman who deals specifically with traumatic loss and PTSD, and it has really, really helped me. I feel no shame in sharing this because there is no shame in seeking help when you need it, and anyone who makes you feel that there is, probably a) has never walked in your shoes, and b) is not a healing person to have around you at this already difficult time. Honestly. This world that we have been thrust into can feel so big, so impossible to conquer. If there is one thing I am proud of myself for in how I have handled all that has happened (miscarriage, child loss, subsequent infertility) it is that I knew I needed help, and regardless of what I thought people might think, I got it.
Throughout the last year plus, my therapist has brought many little tidbits and techniques to my attention to try out. Some of them are pretty involved, and difficult to explain, but on my last visit she shared a technique with me that I thought might help you too. It is called PAGL, and I am going to give you the Reader's Digest version below.
I read alot of babyloss momma's blogs talking about how tough certain decisions can be to make.
"Should I go visit my child at the cemetery?"
"Should I not?"
"Should I try to conceive again?"
"How do I know if it is the right time?"
"Should I return to work?"
"Should I move and start over somewhere else?"
"Should I continue this friendship with someone who I have known for years but really hasn't been there for me since my loss?"
"Should I share the news of a new pregnancy?"
"Should we wait until the baby is here and alive to share the news?"
Etc. Etc.
You get the point. As if grief weren't messy and difficult enough, it sometimes feels so magnified by the questions that swirl in our heads, especially if there is the added burden of feeling pressure to do what those around you think you should do. Or, what you think they think you should do.
What my therapist shared with me is called The PAGL Technique. It was developed by Dr. Thomas Hora, and I am sure what I know about this technique is very basic, but if you go and google it, you can get more in depth information.
PAGL stands for Peace Assurance Gratitude Love.
Basically, the way it was explained to me, is that PAGL is a way to pray on each of these issues and come to a decision that is right for you. When I say prayer, I don't mean religious prayer, more of a meditation, however if doing this through religious prayer helps, by all means do what feels right.
When an issue plagues your mind, for instance
"I just lost my child, and we have been invited to a party where there will be other children..."
close your eyes, think about the situation at hand, and pay close attention to how your body and mind respond to it. If it is the right thing for you (and the right thing to do by society's standards, and the right thing for you are two totally different things and that is okay, this is about what is right for you) so if it is the right thing to do, it should bring into your heart a sense of Peace Assurance Gratitude and Love. The idea being that if you feel PAGL about a certain decision you are making, you can feel confident that it is the right one for you. If you don't feel PAGL, something in your body, the universe, your mind, I don't know, is telling you to move in a different direction.
Since entering this new world of IVF, alot of questions have been thrown our way.
"What to do with frozen embryos?"
"Would we be willing to freeze embryos?"
"Would we be comfortable with assisted hatching?"
"Are we comfortable with the process of IVF itself?"
Each of these questions/situations can veer off in several different directions, and I have been quietly, prayerfully reflecting on each, closing my mind and body off to what I think others would think of them (whether they would judge them, support them, condemn them, push them) and instead searching for whichever option brings me the deepest sense of Peace Assurance Gratitude and Love.
I am certainly no expert on PAGL, and don't claim to be one, but really it makes total sense that the right decision would be that which feels right.
I know that the readers of this blog come from all walks of life. Babyloss, Infertility, Life in General, and that is why I thought this would be such a good technique to share, because searching for answers that bring the most Peace Assurance Gratitude and Love into your heart is helpful, regardless of the situation.
Thursday, November 19, 2009
My 1st Blog Giveaway, PTSD, & Mels Show & Tell
I was going to save my first blog giveaway to mark my 100th post, I am somewhere around 85, but then I found something so precious and timely that I just couldn't keep it to myself. More on that to come later on in this post. Today's Show & Tell is sort of a mish-mosh of things from this past week, bear with me...
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Last weekend my hubs had to work the better part of the day on Saturday, so, in his absence I headed over to a local craft fair. It's a small one, just a few tables in a Knight's of Columbus Hall, but one I have attended each year since we moved here and so I was looking forward to it. I scanned the tables one by one to see if anything spoke to me. My heart just about fell out of my chest when I came to a table of perfectly knitted baby clothes. They were beautiful, and sweet, the likes of which I had spent many months dreaming of dressing Peyton in, and I felt myself get hot and the room spin at the sight of them. IT's funny that way, and by IT I mean PTSD, because I can be in one place where there are baby items, and sort of tune them out, and then be in another, like this craft fair, and feel my chest tightening and my breath becoming labored as the memories flood my mind, and before I know it the room is crashing down around me. I don't know why IT is this way. IT just is.
In my efforts to get away from the adorable sets of booties, pom hats, and the socks that were knitted to look like shoes, I practically tripped over a woman pushing a stroller. Yes, that's the way IT goes sometimes. Do any of you go through this? Do you ever feel like the reminders of what you don't have chase you around in public? Anyway, I hurried to the other end of the room, making my way for the door when I saw her... pink and perfect, swaddled in a blanket that said "Bless This Baby," with a halo above her head, and a set of gold wings off her back. She caught my eye and I couldn't help but reach out to grab her.
"Isn't she precious?" A woman next to me said. "You know I have a friend whose baby just died. Can you believe that still happens? I thought this would be perfect for her."
"Yes, I can." I nodded. "I just lost my daughter. It is perfect."My response caught her off guard, leaving me in one of those awkward "I just shared too much with a stranger" moments. Not knowing how to respond, the woman offered a sympathetic "oh" and left, but I stayed, looking at her, turning her over and over in my fingers. Hubs and I have talked about setting up a little Peyton Tree each Christmas, and finding an ornament to honor her life each year. Without a doubt, in this little angel, I had found our 2009 ornament.
This is where my first blog giveaway comes in... FINALLY... I know...
I purchased a second little angel ornament, red, so it could be used to remember a girl or a boy. Here are some pictures. I am sorry they are not clearer, I have been using the cellphone camera and it is not very good.
The note pinned to blanket reads "Bless this Baby"
Okay, so this picture is just awful.
Believe me when I tell you the gold wings are just adorable.
The blurry bit on the bottom is a tag that reads "2009"
If you would like to be entered in this giveaway, please include your angel's name along with your comment to this post. A winner will be chosen using random.org's random number generator and will be announced sometime Friday evening. This giveaway closes Friday at 5:00PM EST
To see what others are showing and telling, visit here.
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