Positivity and Worry

I wanted to write something about positivity and how people's perceptions of being positive effects a baby loss parent.

My friend Aoife lives across the world from me and every so often i go to write a post and I'll read hers first. She tends to find the words that I can not. I am going to share what she posted today as a reflection of something that I have been experiencing as well.

Figuring this all out isn't easy. It is a loss that complicates everything and so far it seems to be getting more complex and confusing as time goes on.
Listening to other people's ideals that they feed themselves to get through this complicated life isn't easy either.

I found "The Secret" before Oprah got her hands on it.
I loved it, I lived it, i tried it, told all my friends about it. It simply does not work.
"The Secret" for the people who made "The Secret" is that they made a lot of money off of selling a great idea that is just not reality. It makes you feel good, gives you lots of hope and has a lot of good principles!
In response to this blog that Aoife wrote, another blm (SG) said "being positive isn't an insurance plan."
So very true.
Slapping a smile on your face and reassuring everyone around you that you are Zen and Fine... does not mean that horrible things will not happen to you. That is called hiding your head in the sand.
It is just not reality.
And worrying doesn't mean that you think it's going to happen to you. It's you acknowledging that it might which may help you take a more pro-active route.

Another one of my favorite bloggers (MB) wrote, "If I talk about her too much--which, frankly, I rarely do, it's just too hard for me--I feel like the wailing banshee parading her dead daughter's body through the streets. If I don't talk about her often, I feel like a neglectful mother. And like I'm putting myself out there as completely FINE! I'M FINE! Can't you tell I'M JUST FINE?!" 
This delicate balance while trying to stay as focused on health and positivity can be dizzying, disorienting and exhausting.

The eagerness that people get to tell me exactly what i need to do to or try to do to heal myself.... to have a living child...  to stop grieving.... people like to think that they have the answers.  But not necessarily the eagerness to listen to what i have lived through and know to be a truth because i have gone over everything with a fine toothed comb over and over again. Because after all, what do i know? I'm the one with a dead son and the deep driven desire to never experience a loss like that again.

Worry is a positive thing in my life. It is me pushes me to be brave and make the best out of a horribly devastating experience. It is me preparing myself for anything else and knowing even more then before about all of the possibilities. I have time to educate myself and get my body in the absolute strongest condition that it can be in. Worry keeps me focused and driven to work on things that within my control in this crazy life.

People say so many things. We are waiting to try again, but the truth is when i am pregnant again, I have EVERY right to be completely scared shitless and worry when something doesn't feel right. How could i not be scared?? It's reality! I am a human and i learn from what happens to me. and me worrying isn't the danger. Perceived negative thoughts are not the danger. Pre-eclampsia is. Random acts of God/Life is. Chance and luck is. Things completely out of my control are the real danger.
I am not saying that i will worry everyday for the rest of my life. I do believe that it will come and go  and i will let it.

Anyways...  Aoife says it way better then i do. Thank you for letting me share this Aoife! :

PMA - Positive Mental Attitude

Every so often, I come across someone who holds a particular set of beliefs that leads them through this messy thing called life, colouring their view of the world. Sometimes it’s faith, sometimes a religion, sometimes a mindset or an attitude, sometimes a God, horoscopes, tarot…

I see the appeal. It’d be nice to be guided through with a neat and tidy explanation for everything. In some ways I’m envious of those who hold such steadfast views. It must provide such comfort, such reassurance, such answers… and perhaps even a measure of control.

I came across one such person’s view a while back. She is convinced that, “Having a positive attitude will always see you right”. She described many close calls: a brush with cancer, a choking incident, a child’s leukaemia scare… she firmly believes that all of these potential disasters were averted because she stayed positive and believed that everything would be alright in the end.

I don’t. In fact I was internally seething as I listened to her spout this nonsense (whilst of course politely nodding and “Mmmm”-ing in all the right places – yep, still a people-pleaser at heart). Optimism does not cure cancer, or prevent babies from dying. Full stop. Nature sometimes gets it wrong. Mistakes are made and tragedies happen.

Her attitude is actually arrogant and targets the most vulnerable. It adds culpability to the victims of the tragedy, whilst simultaneously elevating herself to superhero status who saves the day with her magical mind.

You see, what I heard whilst she was explaining her core life beliefs was this: “If you had just had a positive attitude, Seamus would still be alive.”

I don’t want to feel responsible for my son’s death because I wasn’t positive enough. Or worse, I don’t want my Seamus to be deemed to have had a negative attitude – he was just a baby for God’s sake. I don’t want to be made to feel that one of us was not enough. That the key to his undoing was an attitude problem.

Perhaps I should give her a break. Everyone has their own coping strategies. And fortunately for her, luck has been on her side, and consequently, her life view has been reinforced by her experiences.

But it strikes me lately, especially as this pregnancy progresses, how wary everyone is of my mindset. I have felt that medical professionals have sugar-coated information to protect my state of mind, that family members have been concerned about my stress levels and that people want me to focus on a happy outcome.

I myself have tried to temper my moments of grief for Seamus, quickly trying to stem the flow of tears, fearing it will somehow have a negative impact on this little fella.

It has got me thinking about where I stand – am I an optimist, a realist, or a pessimist? Positive or negative? Do I believe my mindset can affect outcomes?

I think I’m all of those things – it depends on the day you catch me. I wish I could pin down my own beliefs. They seem to flit from one thing to the next, shape-shifting according to what best suits my purpose at the time. It’s all infuriatingly woolly. It makes me feel like a weak, wishy-washy individual too scared to reside anywhere except squarely on the fence…

But these eternal optimists are a little alien to me. Do they not worry? I see no harm in trying to keep my mood positive – but I need to be able to give myself a break when I don’t manage it. In fact, back in the summer, I saw a hypnotherapist who really did help to lift my spirits. But, I could never simply subscribe to a positive attitude being a cure-all. That would require me to repress my worry (so as not to appear negative) because if I voiced negative things, surely then, the protection afforded to those with positive attitudes would be lost? But then, wouldn’t internalising the worry end up giving me a tumour?

I don’t for a second believe that any kind of mindset or attitude would have saved Seamus. But what if I’m wrong? What if the key to a successful pregnancy is to just be positive? What if this little one’s life depends on it? How on earth does one blindly skip happily through a pregnancy after living through the worst possible outcome?

It would feel a little dishonest and disingenuous slapping a smile on and pretending everything is A-Ok. I’d like to simply be realistic. I think I will continue to have days where the worry runs away with me and I convince myself that we will have to go through the pain of losing another child. Likewise, I’ll surprise myself with those days where I can take a deep breath, smile, and indulge in the fantastic possibility that, at the end of all this, maybe, just maybe, (please God, pleeeaaasssse) we may actually take home… a living, healthy, baby?

-Aoife, from Now I Lay me down to sleep...

One year ago today i pee'd on plastic stick and saw two pink lines.
My heart jumped out of my chest, absolute shock.
Then absolute joy.
I laughed nervously as i handed the stick for Jeff to see. He went silent for like an hour, so shocked that he couldn't find his words. lol
Truman was coming and a year ago today was his big announcement to us that he was on his way.
This day a year ago changed our life forever.

I still remember the beaming joy radiating out of Jeff's face as he told his best friend Owens that he was going to be a Daddy. They drank Mother Ship beer to celebrate, while i drank the fruit and veggie juice that Jeff at prepared for us.

We went to the doctor the next day for a confirmation. It was all true.
Afterwards we went to a Victorian town near us and bought a blue corduroy elephant at little boutique for our son. (good guess on the gender on our part at that time)
I told the elderly lady at the cash register that we just found out about our baby and this was it's first present... something to remember the day that we found out that we are parents.
We happily walked down the street holding hands.
The shock was fresh. The joy was fresh. and as happy as we were, we were scared shitless (rightfully so in retrospect).

The blue elephant came to the hospital in SF with the bag that Jeff had packed for me.
We were all still so hopeful for the best.
Even this stuffed animal was waiting for Truman to come home. For Truman to love him and wear him out.

Now it sits alone, head tilted, on the bookshelf.

The only thing that comforts me today is looking back at the pictures of myself during this time. There is a fullness- a wholeness- a calmness- a completion- that you can see in my eyes. I was finally whole.... and it only lasted those months that he was with us and okay.
I finally had the family that i always yearned for. My life was just about to start and i knew it. I loved deeper and more then ever before and it felt amazing.
Such a potent and happy time for us and our little family.

I love you, Truman.

Inspirational Garbage

Fellow BLM, Nikki, inspired me to write this blog.
she said it perfectly when she said, 
"People who say whatever doesn't kill you makes you stronger probably have not held their son as he died. "


Yes. Yes. Yes.
Inspirational garbage. It's those quotes, sayings, beliefs and thoughts that may comfort the general public, but not us child loss parents.


Not everything happens for a reason. 
No one knows why anything happens to certain people and not to other's.


There are SO many quotes out there, especially on Pinterest. When i read them, i cringe.


I have been going to yoga lately, about 3 times a week. I go to an Anusara class and for those of you who don't know, it's more of a philosophical, mind and body yoga class. In other words, you aren't just going through the physical poses, you are linking them with thought and intention. 


I have seen two side os yoga.... the side where Ego is enlarged (unintentionally) and you think you are some how enlightened more so then others while still obsessed with how hot you look doing yoga OR it genuinely helps you feel stronger and work through some issues that you may be experiencing. My teacher is talented. Do i think that she is wiser then i am? Or has more knowledge on life because of her teachings? absolutely not. Can I learn from almost everyone in my life? absolutely.

Before the class, I was sitting in the lobby focusing all of my energy on having a productive class. 

There were probably 10 of us there waiting. 

A woman came into the room, holding her son, looked directly at me, said "we are going to sit right here next to her," and sat down right next to me and started breast feeding her about 9 month old boy.

I didn't even look at her, but i knew from the sounds that that is what she was doing.

3 months ago, this would have jarred me to the core.... I would have been sick with grief and sadness and felt that the cruel universe was once again rubbing my face in what i no longer have. I might have even said something to her like, "my little boy just died, can you please give me some space."

But i didn't. 

I didn't react.

I acknowledged in my mind what was happening and I just got up and walked into the yoga studio and then it was out of my mind until now.

The weird thing is, she wasn't even in our class, so who knows why she was there, breast feeding her child.... a universal test, that i passed. My grief is not as harsh as it was and there was strength present.

I started class with a clear mind. Ready to focus on my health and wellbeing.


The class was based on "Your story". My teacher had gone to a weekend workshop on this and was excited to share what she had learned.
Your story is held in your pelvic girdle (Hips and Sacrum).
I instantly thought of Truman, happy as can be in my Pelvic girdle. and then my mind went to my Sacrum injury. My sacrum injury throws off my balance from time to time. Here i am with a broken heart, a broken sacrum and a huge story to tell.


i do think that there are wonderful lessons in yoga. They have helped me a lot. But this lesson was not working for me and i found it to be inspirational garbage.


I got her point. "We are bigger and have more potential then what happens to us." 
"You are not your story."


Really?


Everyone knows that influences affect us and who we are as individuals. Society, your parents, your friends, movies, tv, the yoga class, etc..... we are creatures that are affected greatly by our surroundings and how we deal with what happens to us.


You could see me struggling through the class much more then everyone else. My balance was off, i was not as focused. My Story was too big "to release to the universe."
It's because everything that she said I felt like she didn't know the full lesson to teach in the first place.
There was no room for a baby loss mom in that class. 


Having Truman and losing Truman is so deeply ingrained into everything that i am and everything that i do, including yoga. and i am proud of that. He makes me push myself to be stronger and to be better.
Pre-eclampsia, is a disease, that is within me. It may strike again. It may not. It easily could have killed me. But it didn't. It may in the future. That is something that yoga can not think away. It is real, it is there and it is bigger then me. It killed my son. I will do everything with in my power to keep it away but it definitely does effect my potential as a human being. I may not be able to mother biological living children because of it.


But i do not think that at this moment, in the here and now, that i am more then what has happened to me. My story is not holding me back but my story is all that I have, It's all any of us have. When we die, our story ends and we have no idea what happens after that.
To ask me to let go of my story while continuing to bring up my story ...... it's just not going to work to bring me to a meditative and healing and centered place.
When she would say "Let go of your story. let go of what has happened to you."
I hear "let go of Truman" let go of all that that includes.
and that will never be possible and i wouldn't want it to be.
Om.

6 months

Today is 6 months from the day i gave birth to Truman.
6 months old.
I picture him in my mind, what he would look like. What we would be doing, what he would be doing.
6 month olds are so fun.
I haven't really been able to grieve properly lately.... i've been too busy. I can feel it building up now. My heart is really hurting.

I went to San Francisco for the first time since i left the day after Truman died.
Right after Truman died i felt like everything was fake... like all of San Fran was a movie set. and everything seemed haunted. Which i am sure was probably some sort of weird physiological coping thing due to the crazy amounts of trauma and stress. When i think back to that day, those days, i can not believe that i survived it.
That alone could make me break down into tears.
But being in that city again was good for me. I definitely feel him in the air there. I spend a lot of time outside and i never feel like he is around me up here on the north coast. But my trip to San Fran left me feeling like i visited with him and I liked it.

In the past 6 months so much has changed. and we have made our way through so much of the grief.
after all, we are human, we can not survive this life if we continued to feel the pain and anguish as those first few days/weeks/months after he died for the rest of our lives.
It's normal to move on but i can totally see how and why parents who lose their children can not.
Even with my moving on with my life, he is a part of it all and will continue to be. But the grief keeps him close. and there have been many times when i have felt the grief lightening and have fought it, fought to keep it, or felt guilty for smiling. Even grieving the loss of my heavy and intense grief is lifting.
Even with that, I long for him every second of every day. I never wanted him to be a cherished memory. I always wanted him to be my son.

I was just thinking about if Jeff and I have any other living children in the future.... how much their lives will be influenced by Truman being their older brother.
It's amazing.

I saw two little girls running down the side walk today and i thought: where are their parents? Don't they know that anything could happen? those girls are someone's daughters.... how brave or absent minded are their parents to just let them free, to do whatever and take their chances.

......

I laid here tonight and spent some time with Truman. Grieving him. Remembering every little thing about him that i can. I am still so proud of him. He tried so hard. He got robbed of so many things (and so did we) the moment that he died.

These are some pictures that i never shared. His eyes are swollen very badly but i love his little nose in this picture and how you can see so clearly that he has Jeff's upper lip and my chin.

Right after he came out... a few hours old.

I am finding that with time that my words are getting lost. That is why i haven't been blogging as much anymore. I just don't know what to say about all of this. It almost becomes more complex as time goes on and i just don't have the vocabulary for it.
and as time passes it's harder for those outside of the baby loss community to understand.

I want to continue to talk about Truman and be openly proud of him but at some point you start to wonder how you are being perceived by others--- and it shuts you up.

When listening to people talk, I have thought in my head so many times "if only you really knew. you have no idea because your child isn't dead." It seems to happen at least once a week. These are the thoughts that only the baby loss community will understand.

I am a mother, to a boy named Truman Montgomery Clerc. He is the bravest person who i ever met.
I hope that he is at peace. I hope with every inch of me that i can see him again.
If he were here today i would be snuggling him in bed, singing to him, listening to him giggle and kissing his sweet little cheeks.
Maybe in my dreams tonight......
<3

Missing my Truman hard today.

I'm Back!!!

I'm back from my loooong trip.

I'll start by saying, i missed blogging with you guys and i thought about you all through out the holidays and New Year.

One of my friends posted this to my facebook page while i was on my travels.... It is one of the nicest things anyone has ever said to me. It touched me so deeply that i wanted to share it with you guys.

<3

I'm not sure if many of you know this but my partner Jeff and I are not married. We have been together for 7 years.... 8 years on March 1st. 

Key West is one of our favorite places on earth and New Year's eve has always been one of our favorite holidays.

Minutes before midnight on New Year's Eve, Jeff pulled me out of a crowd of people and into an opening in the street. In the middle of Duval Street (close to Truman Street intersection), Jeff got down on one knee asked me to marry him! He told me that it was a big year for us, the year that we became parents, a year that we will never-ever forget and even through everything we have gone through, meeting Truman was the best moment of his life and he wanted to end the year right for our family.

I am over the moon to solidify our family.

I feel so lucky to have a man like him and so lucky that we have grown stronger from our loss. 

I definitely felt Truman there with us.

                                            

The actual "yes, i will marry you" kiss that some stranger took with their cell phone and sent it to me.

Lol!

The ring he gave me is his grandmother's diamond and his great grandmother's diamond. Both women are unique and have their own story and i love how the differences in the cuts of the two diamonds reflect that. His great grandmother was a famous artist here in California... a very well known one in mostly southern California.

Down the road, I want to add a diamond to the ring so it can be passed on (hopefully) to our possible future living children.

I love love love that the diamonds are old and have such history to go along with them.

Even through all the happiness and excitement, we missed Truman. I know that missing him is never going to go away, no matter what. To be so happy and so sad at the same exact time is exactly what it is. I never even knew you could feel both so strongly all at the same time. 

We are bonded in knowing that no one knows more how we feel then the other does.

The trip really helped me break up my patterns and I feel the heavy heavy grief has lightened. But i also learned that road trips are no longer good for my soul like they used to be before when i was an innocent still.

It was too much time to just sit there and think about Truman.... both on the way there and the way home, i did a lot of crying for him. Looking into the back set and envisioning him in a car seat with us. Going through the events. Imagining him on our wedding day, learning to walk still, wobbly and cute in a bow tie. Me handing him my engagement ring when he tells me that he found "the one". Every song on the radio reminded me of him. 

I love him so much.

and i miss him so much

and i search for him in every way that i can

hoping that life will give me a shred of evidence that he is with me on some level and knows how much  i want him here with me.

and it's exhausting.

I'm tired of the grief and at this point in my grieving process i think that it's good for me to stay busy.

My vacation was part of the grieving process. I was not resting. I was seeing many people for the first time since Truman died. I was forced to be in public and communicating with people for the entire time.

Now i feel like i need a vacation from my ridiculously long vacation.

As for wedding planning.... I never thought superficial decision making and "stress" would be so healing. So i say, bring on the color concepts, the menu items and all the other silly little decisions that will be my absolute pleasure to make!

It's so fun to have worries and concerns on this level again.

The re-enactment of the proposal for a photo-opt!

Jeff's Mom, Sister, Brother-in-law at our celebration dinner @ Blue Heaven, Key West. 

 A few of the Truman fonts i saw a long the way. It felt so good to be surrounded by his name!

Christmas recap

This is officially the only place where i can be real.
People want to hear that i am doing great. That i'm all better.
Or they avoid asking me how i am doing because they don't want to hear how i am really feeling.
Bogus either which way you look at it.
Isolating.
and as time goes on it's becoming more so.

The road trip here to florida was not really the best.
There was a lot of built up anxiety and sadness that once we hit the road poured out, on and off.
we cried, we tried to enjoy ourselves, we had social anxiety, we were frustrated, we talked about Truman.
We usually love being on the road but not so much this time. It was like it was clearly part of the grieving processing. We had to just get through it... and it was not as carefree and enjoyable as it was before we carried this sadness. That innocence  and the freedom that comes with it is gone.
instead of Truman's first Christmas, Truman's first time to his grandpa's house, Truman's first road trip.... everything is our first time without Truman and it all fucking sucks.
and no one gets it besides Jeff. and you guys.

I started this blog as a way to have my family and friends to understand what this was like. As time goes on i am starting to realize that they will never, ever really get it no matter how much i type. Who would want to truly get it anyways?
It must get old for them. I can only imagine what it would be like to be on the other side of this.
But i think i am going to start a new blog exclusively for my baby loss community friends so that i can say what i really need to with out hurting people's feelings.
The facts are, i am a survivor but i am a wounded still. I will never heal. and you baby loss friends are the only people who really understand that.
I know that i may sound ungrateful on some level.... which is not the case. I am grateful. But i now have to put up with people expecting me to put in a facade. a happy face. This back and forth of their expectations of my sadness and my actual sadness is another part of this loss.
My sadness brings them down.
they don't understand and they don't understand how lucky they are to not understand. they don't understand that them not understanding my pain and my loss is hard for me. They don't understand that considering everything, i am doing very well.

Our time here in Florida has been great so far. Very comforting to be here.
until yesterday.
Christmas. nothing can comfort this feeling of loss.
We woke up heartbroken.

I'm being honest when i say that i had resentment towards my Dad and his girlfriend who cheerfully carried on through the day with no mention of Truman's existence.
How could they not bring him up? not want to say his name over and over?
How could they not be sad and missing him like we are?

At one point I said something about how i can't wait until this day is over. My Dad asked why. and i responded by saying that it just reminds me of everything that i don't have. He asked me if he thought it was my attitude that was making me feel this way. and i said "how do you think you'd be feeling if i died this year?"
it didn't respond.

isolation.

you can't make someone get it.
and the thing is, is that my Dad and i are very close. He usually always makes me feel better.
He was with me in the hospital when i had pre-eclampsia. He was there for it all, watching, as my father. Truman's grandfather.

I started typing this all last night and spurred an argument between him and I. He questioned why i felt more comfortable typing to a bunch of strangers instead of finding comfort in my family.
Its as simple as this: I want to talk about Truman. He wants to talk about everything but Truman. Therefore i held back tears all day until i emotionally shut down and stopped talking all together. I don't care to talk about the weather or watch the news.

I can't help that yesterday has angered me. I don't have my baby and it isn't fair.
I can't help that on one else wants to say his name.
I can't help that they may think i'm being bitchy. My silence is not bitchy, it's me keeping my grief to myself and not laying it on other people who don't care to grieve with me.

The truth is everything would be different yesterday and today if Truman was alive.
But he isn't.

thought

My soapbox this evening on life, baby loss, grief, religion, the world, politics, other people--- just needed to get it out...

The more i experience in life, the more i go through, the more i learn.
the more that i live/learn/experience the less that i know.
Things are absolutely abstract.
They are not clear cut.
They are always changing.
Just because you think the world is a certain way doesn't mean that it is. It doesn't matter how dull or exciting or sane or insane your life is. It can switch on you so fast.
Life can pull itself right out from underneath your feet. and everything that you thought that you knew can vanish just like that.
I was not a mother. I wanted to be a mother. I became a mother. I was a mother. I am a mother with no child.
and now... i don't really know what i am other then that because it has infiltrated every single aspect of my life.

Life and politics and war and grief and sacrifice......
If you really "know".... then you know that you don't know.
if you think you know, then you're a fool.

It's a chaotic world.
its a chaotic world with lots of things that us humans build up around it to try and give ourselves a sense of control.

True courage, true bravery, true strength..... that comes when you let go of the control.
Not when you hang onto structure. Structure may be comforting but it doesn't bend.... or barely bends.... and what doesn't bend, breaks.

Because letting go is the hard part. Holding on is easy.

but then again... what do i know?

none of this is easy and none of this makes sense.
What's the point of living life is everyone you know will die? at any age for whatever reason.
(I'm not feeling suicidal, i'm just honestly wondering what the point to all of this is? Is it so chaotic that it's possible that there isn't one?)

"Some of us think holding on makes us strong; but sometimes it is letting go." ~Hermen Hesse

Assignment #4, the final assignment

Today marks 4 months without Truman here with us. 
every single month that passes by I am slapped with shock. Shock that we have to go on like this.
Even though i keep repeating myself... It is just so unbelievable that this happened to us. 


Assignment 4.
Where do i want to be a year from now?


This means that i  have to hope for something...............
and hope is something that i have been trying to figure out for the past 4 months.
hope is something that i am almost afraid to have because it means i may be crushed again.


I am in this space in between losing a child from a disease that almost killed me as well and wondering if I will go on to have any more living children.


Ideally a year from now, I would like to have a living child. But that is not in the cards for me at this point due to medical concerns from my surgery with Truman.


Realistically, in a year from now, i will be starting to meet with a new high risk pregnancy doctors and forming a plan of action on how to get me and a baby through a pregnancy alive.


As i type that, i do think about how that means that I may very well die this next time around.  and I am most certainly afraid to die and leave my Jeff, Dad and friends. I know that any of us can die at anytime. But i was so close. and i know that i am risking that with another pregnancy but i just can not be done trying yet. That decision to try again is absolutely terrifying. Especially because there is a set time frame on it. A countdown.


and people may call me stupid for trying. but my story of trying is not over yet, that is one of the only things that i know for sure anymore about myself.


So between here and there I want to become as educated as i can on Pre-eclampsia, eclampsia, HELLP syndrome and all of the effects that they have on baby's.


My goal is to be in the best health that i can possibly be in by this time next year.


I have already implemented a fitness plan and I am 3 lbs below my pre-pregnancy weight already. I hope to lose another 25lbs safely and effectively. But let me clarify. Getting pre-eclampsia has nothing to do with weight. I just want to be in the best physical shape possible to weather the storm that it is. While I am working out, I am literally thinking about beating the shit out of pre-eclampsia. Sometimes i get so into it that i need to stop because i start to cry. If it was a tangible thing, I would most definitely slay the crap out of it. lol I'm not a violent person. I just hate what this disease does to people and what it did to us. So i will beat myself into the most hardcore shape that i can possibly be in to try and beat it.


I want to learn how to cook better. We eat very healthy already but Jeff does most of the cooking because he is good at it and I suck. I want to not suck at it.


I really hope that my photography takes off again too. I have been in a rut creatively this past year. I really hope that I can bring in more clientele and hopefully by this time next year i will be able to handle the pressure of a wedding season again. 


I couldn't decide between 3 words.... breathe, zeitgeist & reciprocity.
I wanted to let the letters decide for me. So i went out in search of any and all letters that i could find. Even though i really wanted to use "Breathe"  I could not find a capital B out there so the letters lead me to "reciprocity".

I like the word "Breathe" because it is almost equivalent to "Just be" to me. Just breathe. Take a moment. Be right here, right now. You are alive. Truman is not. This is the reality of the situation. I am privileged to be breathing. something that i take for granted almost every single day.

~I Breathe in Strength, Confidence and Blue Skies. My fears Yield in the Vibrant Light of My Being~

and "zeitgeist". The spirit of the time; the taste and outlook characteristic of a period or generation. the spirit, attitude, or general outlook of a specific time or period, esp. as it is reflected in literature, philosophy, etc. 

have you seen the indie film "Zeitgeist"? I saw the 2007 & 2008 versions but i am looking forward to watching the 2011 & 2012 version.

What a spirit of the times it is for Jeff and I right now. I can only imagine at this time next year.... the zeitgeist that that will be? I don't know.

So Reciprocity it is. It's a nice word.


reciprocity : the quality or state of being reciprocal : mutual dependence, action, or influence

1. A reciprocal condition or relationship. 2. A mutual or cooperative interchange of favors or privileges, especially the exchange of rights or privileges of trade between nations. 1. reciprocal action or relation 2. a mutual exchange of commercial or other privileges "1. Moving back and forth alternately. 2. Giving and taking something mutually. 3. Making a return for something given or done. 4. Being complementary or at least equivalent. The Principle of Reciprocity Reciprocity means give and take. It's the law of cause and effect, and we see it all around us. When you say, "You scratch my back and I'll scratch yours," that's Reciprocity. Isn't it funny that we human beings judge another person's heart by the way that we give? When you truly love someone, you want to lavish your treasures upon them. Whatever your gifts -- time, money, talent, affection -- they express your love. The reverse is also true. People hold back when their heart is cold. Cold-hearted people can expect coldness in return. Whatever "Seed" is sown, that is the "Harvest" that you can expect to "Reap". There are two important lessons in the Principle of Reciprocity. The first is - "If you give, it will be given back to you." Sometimes you get back more than you give! (and sometimes not)! The second lesson is harder to master - "Learn to give without hoping to get anything back!" Either way, it makes you feel good. This Principle of Reciprocity affects your relationships with your loved ones, neighbors, friends, and even strangers! The Principle of Reciprocity shows that you're kind when you use what you have to help others. "

I like this word especially when it comes equipped without the sense of obligation. Giving just to give. Doing something without expecting anything in return. This word is complex and often comes with baggage. I want to focus on this word this year while eliminating that baggage.


After losing Truman, my mind flooded with good deeds and kind things that i have done for other people. Random acts of kindness with truly expecting nothing in return. 
Once he died and since then I have focused on those things and found myself cursing this unfair world. 
No matter how good you are, no matter what you do to go out of your way, No matter the good deed, it does not "scratch your back" back when you need it to. 
This really bothers me in regards to Truman. 
I guess on some level I was hoping that Karma really does exist. 
In some cases in my life, I have been waiting a very very long time to see a sense of "what goes around comes around" to come into effect. I have been waiting for patiently for years, in many cases it never-ever comes (from what i can see).  and to think on some level that this is my "what goes around comes around", that losing Truman is my Karma, That somehow i deserved this? It's unthinkable.... in my mind, no one deserves this.  


This truly is a chaotic world.


I will never use the saying "what goes around comes around" in regards to what someone has happen to them in life again. I have learned the hard way, that sometimes people, most definitely, do not get what they deserve. and saying that is like applying your judgement to a situation.... you have no idea what a person puts out in the world. you have no idea what they truly deserve. you have no idea. none of us do.


Even though these horrible things happened to me and us.... we continue to give reciprocity to each other and to the world. 





It is a glorious privilege to live, to know, to act, to listen, to behold, to love. To look up at the blue summer sky; to see the sun sink slowly beyond the line of the horizon; to watch the worlds come twinkling into view, first one by one, and the myriads that no man can count, and lo! the universe is white with them;and you and I are here. -- Marco Morrow

More then anyone on this earth i do believe that a parent who has lost their child understands what a privilege that it is to live. and we battle between knowing the privilege and using that privilege for all that it's worth. because sometimes we just can't make the most of life and we feel guilty for it.

Our entire lives are filled with this give and take. 

I will never be able to pay my son back for the love that he showed me. I will never be able to pay back that kind stranger who hugged me in the street that one day right after Truman died. Her kindness still pops up in my mind. I'll never be able to repay my friend Julie and her husband Jessie who stuck so close by our side during the entire hospital-birth-death of Truman. I will never be able to repay my nurse Elspeth. My Dad. Jeff. my friends, new and old who have held my hand through this.

there will never be an an equality between that which we give and take. and feeling guilty about any of it is just useless. Because it will never even out. It just is what it is. You give when you can, you show appreciation when you can, you take when you can and hope for the absolute best. and you stay grateful.

This week Beryl posted a blog bout the Giving Tree and how every year, as a tribute to Bella, she "adopts" a child in need about the same age and buys them Christmas gifts.

She did this. It touched me. So i joined in as a tribute to Truman and adopted a child in my area and told my friends about it. Beryl doesn't reap the physical benefits but someone else in need does. so maybe the benefit is more emotional for everyone involved.

Now it is contagious and other people want to help children in need this holiday season as a tribute to whoever. 

It all feels SO good to help someone in need. and this was reciprocity influencing my actions.

I know that Truman would be proud of us doing that.

I'm not sure if you remember the book "The Giving Tree" By Shel Silverstein.

Plot: The Giving Tree is a tale about a relationship between a young boy and a tree. The tree always provides the boy with what he wants: branches on which to swing, shade in which to sit and apples to eat. As the boy grows older, he requires more and more of the tree. The tree loves the boy very much and gives him anything he asks for. In an ultimate act of self-sacrifice, the tree lets the boy cut it down so the boy can build a boat in which he can sail. The boy leaves the tree, now a stump. Many years later, the boy, now an old man, returns, and the tree sadly says: "I'm sorry, boy... but I have nothing left to give you." But the boy replies: "I do not need much now, just a quiet place to sit and rest." The tree then says, "Well, an old tree stump is a good place for sitting and resting. Come, boy, sit down and rest." The boy obliges and the tree was very happy.

"Is this a sad tale? Well, it is sad in the same way that life is depressing. We are all needy, and, if we are lucky and any good, we grow old using others and getting used up. Tears fall in our lives like leaves from a tree. Our finitude is not something to be regretted or despised, however; it is what makes giving (and receiving) possible. The more you blame the boy, the more you have to fault human existence. The more you blame the tree, the more you have to fault the very idea of parenting. Should the tree's giving be contingent on the boy's gratitude? If it were, if fathers and mothers waited on reciprocity before caring for their young, then we would all be doomed." - Timothy P. Jackson

Thank you for this class, Beryl & friends. I truly enjoyed my time with you and my new friends here at Illuminate. xo

Choices and questions

I've been withdrawing into myself again lately.
Last night and today have been paralyzing.
I want to get back to a way of life.
for some reason it is so incredibly hard.

It makes me think about Jeff's Uncle. He passed away within hours of Truman's passing, on the same day. As you can imagine this was very hard on Jeff's mom, losing a grandson and a brother within hours of each other. The whole thing is really bizarre and there is a lot of mystery surrounding his entire situation. His uncle looked like a "Truman" to me and i expressed that before the both of them died. Looking at a picture, I sensed that my Truman would resemble him in some way. One thing that we found out was that he never really moved on from a certain time in his life. He was stuck there, frozen there in time and hid it from EVERYONE in his life, including his wife, his parents, his sister, etc. Once he passed away there was no hiding it, the writing was on the walls, literally. When i feel stuck, i think of him and the pain that he must have carried and hid from the world.


Read this yesterday : "Blessed to be with the people that prayed for him and our family. Thanks be to God for sparing my Dad's life so he can further spread God's message."

Made me spiral into all sorts of emotion. I wish that i didn't take it so personally but i did.
I am happy that her father is alive.... but I was offended by this public display.

Is it gloating on some level? Because it feels like it to me.

Like my friends and family didn't pray and beg God enough? That horrible things happen to me because i don't spread the word of God? How is that a loving God that should be praised?
What about the beautiful baby loss mom's that do spread the word of God? Why are they fucked over too? What is the point of ending something at the beginning?

Do people think about these questions ever?
Why can't people just be grateful for what happens or doesn't happen without applying it or blaming something else?
I think that is where i get annoyed. Like maybe that person's Dad is alive because he made the decison to go to the hospital and he had nurses and doctors who chose to spend their life going to school and learning to heal and maybe that mixed with luck is the reason he is spared. Maybe it has absolutly nothing to do with God and everything to do with the decisions that we make. and how those decisions effect each other. I don't know really... I'm just thinking out loud.

I saw someone complaining about the hell that they have been through for the past 5 years. This person in particular turned to drugs, made a choice to turn to drugs.
Chose to continue to do drugs even after several interventions and rehab attempts.
I think about all the pain and trials and tribulations that people experience....... and choice.

How far do our choices really take us?
The choice to marry a crappy man. The choice to divorce him. The choice to swallow a pill to escape the ache that this creates. The choice to over indulge in it. or the choice to starve yourself from it. The choice to go outside and smoke a cigarette, when you know it will give you cancer.

I keep thinking about if there was a choice I made on any of this that effected the outcome for Truman and I.
I feel like no matter what you do or don't do, things are going to happen and you are going to have to deal with it. I feel like sometimes choices are over rated. Because this world really is chaotic and beautifully brutal.
If you want something, choices help you get there. Choices make you feel like you are in control, but you really aren't, ever. When it comes to tragedy.... do choices really matter?
So many questions, so little answers.


UCSF Pediatrician team, STILL, has not called me to formally go over Truman's autopsy report.
If i had more energy, I would ream them out.
I contacted one of my doctors from UCSF and told her and she is going to be contacting someone higher up to notify them.

This doctor of mine has contacted the Peds 3 different times now to remind them to call me.
It's just ridiculous.
I knew that they were cocky and unorganized, but really?
My son died on your watch and you can't even go over the autopsy report with me?
Makes me feel like they messed up somehow and they know it.
It is their job to communicate with parents.

They sucked at it when Truman was in the NICU and they suck at it now and i want to calmly make that clear to the highest person up that i can find.

I don't think any NICU parent should feel like this and i want to make sure i do everything that i can to make sure that UCSF works a little harder to correct their insufficient communication skills.