Thursday, May 29, 2008

catching up

SATURDAY - Autopsy is a four letter word.
I had a challenging weekend. On Saturday L and C both separately asked Kim whether we had the autopsy reports. Hearing anyone use the word autopsy in relation to my son (except me, and my deadbabymamafriends) makes me ill...and angry. I simultaneously wanted to punch them in the face, throw up, scream at them and run away. Instead, I sat perfectly still and pretended I couldn’t hear them.

SUNDAY - Shadow baby.
On Sunday all the kids from the street were playing together in the street. We pulled the basketball hoop out to the footpath and they played for hours. The neighbour with a baby came out and introduced herself. Her baby is 6 months old.
“I so hope there is this kind of community for Joel when he is older.”
I wanted to throw up. I wanted to tell her my baby would have played with hers if he didn’t die. She left, then came back with her baby. I saw her coming. I went into the house and hid. Apparently she introduced the baby to Kim. Kim wanted to tell her about Caden but didn’t know how. I want her to know. To know why we aren’t being nice and friendly with her and her baby. To know that we had a baby, almost the same age, who would have grown up with her Joel and played with him. I need her to know.

WEDNESDAY - I Cried

Today I cried. I cried as I lay on the couch talking to Kim. I cried when I hung up. I cried when I got up to switch on the light, and sunk to the floor wailing at how unfair it is. I cried as I walked to the kitchen, I cried as I opened the cupboards, and couldn’t see a thing for my tears. I cried as I opened the freezer, and sat in front of the open doors sobbing. I cried as I looked for lunch, I cried as I made my lunch. I cried as I ate it.

I’m so fucking SICK of crying. I’m sick of this life of shitty things happening.

Wednesday, May 28, 2008

3 Month Membership

I belong to a club where I have a lifetime membership. I never wanted to be a part of it. I barely knew it existed. It's a club that I hate being a member of. And yesterday marked three months of membership.

To mark the occasion, I got some orange oriental lilies, wrapped them in blue cellophane and took them out to my son's grave.

I have no words for how this makes me feel.

Friday, May 23, 2008

Stillbirth Awareness Bill

Dear Friends,

We have exciting news!

Representative Peter King from New York has introduced a bill to raise awareness about stillbirth that seeks to standardize the definition of stillbirth, and the method in which stillbirth data is collected, so there can be a national repository for stillbirth data with which to conduct comprehensive research efforts. The bill also authorizes a campaign to increase public awareness of good prenatal care practices that may decrease the risk of stillbirth, including monitoring movements during the last trimester. To view the actual bill and supporting documents, please visit the First Candle website.

Now we need your help! We are asking that you write a letter to your Representative asking them to co-sponsor this bill. The more co-sponsors the bill has, the more likely it is to pass. Please note, this is for the House of Representatives only. Do not contact your Senators at this time.

If you could do this within the next couple days to one week, we will be able to maximize the momentum Representative King has initiated!

Members of Congress receive hundreds of messages from their constituents every day. This communication is important to them because it helps them better understand what issues are important to those they serve. Through your requests, congressional leaders will support legislation, add their names as co-sponsors or even introduce legislation to assist constituents in their districts.

The compelling testimony provided by parents at First Candle’s 2007 Advocacy Day-on-the Hill is what prompted Representative King to introduce this important bill!

· The first step is to identify the Representative for the District you live in. If you already know that, or have had direct contact with him/her, you are one step ahead of the game!

· If you do not know who your Representative is, or if you do not have contact information, you can find that information at https://forms.house.gov by putting in your 9-digit zip code (if you do not know your 4 digit extension, you can get it at http://zip4.usps.com/zip4/welcome.jsp.) You will then be able link directly to your Representative’s website. There you will find all the information you need, as well as the ability to email directly to their office.

· Once you have the contact information, write your letter. We have provided a sample letter below, but encourage you to add your personal story where indicated. Personal stories always have a greater impact and are taken more seriously than form letters! Of course, you can write your own letter if you have the time or desire. Just remember to keep the statistics and information about the bill consistent with that of the sample letter.

· Sending a hard copy or email letter are both equally effective. If you are mailing a hard copy, feel free to send along the documents attached to this email. It is not a good idea to attach documents to email letters, as they will most likely be rejected. Do not let this discourage you from using email though, as the vast majority of constituent letters do not include supporting documentation. Your email letters can be sent directly through your Representative’s website.

· First Candle would very much appreciate knowing who you have sent a letter to. This way we can conduct follow-up if and when that becomes necessary. Simply send an email to jennifer.johnson@firstcandle.org with your name and the name of the representative or staffer you sent the letter to. Hard or email copies of your letters are also welcome!

· And finally . . . please share this email with anyone that you think would be interested in supporting this effort, including family, friends, your favorite support organizations, groups, websites, etc.

· If you have any questions regarding the bill or this process, feel free to contact Marianne Adezio at 703-741-7053 or madezio@golinharris.org.


We thank you in advance for your prompt attention to this important matter! By working together, we stand to gain the most in our quest to spare families the devastation of stillbirth . . . in the belief that every baby should live.


Sincerely,
The Board and Staff of First Candle

Sample Letter

Dear Representative ________________:

I am writing to ask you to co-sponsor legislation that would help the CDC and researchers better determine the risk factors associated with stillbirth and convey those risk factors to expectant parents.

House of Representative Bill 5979, the Stillbirth Awareness and Research Act of 2008, was introduced by Representative Peter King of New York in an effort to address the lack of standardized data collection nationally with regard to stillbirth.

Each year more than 25,000 babies in the United States are stillborn. More than 50 percent of these deaths occur in the last trimester of pregnancy and 15 percent occur during labor and delivery. Due to a lack of autopsy/investigation and inconsistencies in diagnosing these, more than 50 percent of all stillbirths remain unexplained.

With standardized investigation and reporting of these deaths, researchers would be better able to determine the risk factors. H.R. 5979 would both standardize the definition of stillbirth and the method in which data is collected, in order to create a national repository of stillbirth data to assist researchers in conducting comprehensive studies in to the causes of, and possible preventive strategies for, stillbirth. The bill also authorizes a public awareness campaign promoting good prenatal practices, including monitoring movements during the last trimester of pregnancy, to reduce the risk of stillbirth.

This legislation is important to me because (insert your personal story here)

Thank you so much for your consideration of my request.


(insert name and contact information here)

Monday, May 19, 2008

Children...

Little-Friend-at-School looks at R, then at me and says

“Is that your mother?”
R looks around, sees me - "uh-huh, yep".
She turns and says to me “Did your baby die?”
“Yes he did.”
“Oh. That’s bad.”
“Yes its very sad.”
pause
“Did you know his heart just stopped?”
“No, I went into the hospital and they told me his heart had stopped”
“Just after he was born?”
“No, just before he was born”
“And then did he just go back into…(she curls her hands up)” She seemed lost and insinuating that she thought he just 'evaporated' in a sense, or turned back into a 'seed'...
I interrupted her to say
“No he was born, and then we buried him in the cemetery.”
Little-Next-Door-Neighbour (also in R's class) says “So if your baby didn’t die, R would have had a little brother!”
I say “yes, he has a little brother”
Little-Friend-at-School corrects her “no he'd have a big brother”
I laugh “no, R would be the big brother!”

And that was that.

They said goodbye cheerily to each other and skipped off home.

I love how kids just take it all in their stride.
They aren't afraid to ask about death.
They aren't afraid to upset you.
They are just curious little creatures.

Personally, I love to chat with R's little inquisitive girlfriends.

Sunday, May 18, 2008

This morning was our phone consult with our new Dr in Sydney. It went pretty well, I suppose. Nothing I wasn't expecting.

He was very lovely

very understanding of our situation

and very sorry to force a 6 month wait on us.

Thursday, May 15, 2008

Bad Things Happen to Good People

Immediately after Caden died I found myself thinking that I must have done something to deserve this. That I must have deserved punishment and I was being punished for something. I ran through all the different reasons in my own head of why I might be chosen to be punished and tortured like this.

And then at some point it came to me.

I wasn’t being punished.

How could being the mother of such a beautiful tiny child be considered a punishment? And as I look around me (figuratively speaking) I see so many other women, good women, compassionate women, loving women, going through the same torture. It can’t possibly be a punishment for wrongdoing. And I have come to believe that we were chosen, to be the mothers of these babies that were not destined to live on this earth with us, because we are strong. We are loving. And we will love these little lost children for the rest of our lives, and honour them in every way we can.

So yes, we were chosen. But not because we were bad people.
Rather, because we are good people.
Because we have it in us to honour these little people in the best way.

It takes an incredible woman to lose their child, and still love and honour them every single day.

Wednesday, May 14, 2008

Every now and then...

Every now and then I get a flash of how our life should be and it takes my breath away. Just a glimpse, into that alternate reality where our baby didn't die, where he was healthy and safe in our arms.

Monday, May 12, 2008

Mothers Day

I don't have the emotional energy to write an entry today.
I feel both blessed and cursed at the same time.

Blessed because of our amazing little boy Rory

Cursed because of my inability to have more children.

Look at what our clever boy made at school. The first two pages are about me, the second two are about Kim.

Saturday, May 10, 2008

the kindness of strangers

In times when you feel like giving up on the world, it is amazing the things you can encounter. When I have been feeling my lowest, I have been shown the kindness of strangers. People who I have met online, but never in person, people who have helped me through my darkest times.

Thank you Michelley for making me a gorgeous bracelet in Caden's colours. Thankyou also for making a charm for Caden.

Thank you Donna, who I have hardly even spoken to, who sent us handmade beeswax candles, a dragonfly for Caden and a crystal suncatcher that sends rainbows all over the walls.

Thank you Luisa, who sent me a magazine she found in the newsagent because it had an article on children's grief that she thought I might find helpful.

You girls are the light in my life, and I cry at the thought of how beautiful each of you are.

And a special thankyou to my very beautiful friend Angie. For offering the biggest thing anyone has ever offered me, to carry a child for me if I am unable to.

I am humbled by your generosity and love.

Thursday, May 8, 2008

Changes

I have returned.

On my very short break from the internet (during which I continued to visit certain sites daily - just lurked rather than commented - yes my addiction to the internet is that severe!!) I reached a few conclusions about certain things.

First. My perspective has changed somewhat on the IVF issue. I discovered that I could handle the idea of the 8 month wait fairly well (because really, time flies) until I start thinking about how other people are getting pregnant and having babies now. I discovered that it was not so much that I couldn't get pregnant now, as it was an issue of jealousy that they were doing it now, and a need to 'keep up' as it were.

Really, how ridiculous. I can no longer set our timelines by other people.

Also I decided to shift my focus somewhat and by giving myself certain projects, I feel that I can better pass the time. Of course tied up in all of this was the receiving of a letter from the head of obstetrics at my hospital - telling me that the odds of me having another terminal baby are very high. Higher than we originally thought, and too high for me to even consider trying to have another child without IVF.

In response to the 'bad' news about IVF (in that it will take much, much longer than I was originally told - and the letter mentioned above) I responded in the only way I know how. I stopped eating, stopped sleeping, and generally was incredibly negative about everything and anything. I behaved as though it were the end of the world.

On my fifth day of said process (possibly in a state of delirium induced by not having eaten and barely sleeping), I decided enough was enough. I was done wallowing because it solved nothing. I was done being this shell of a person because I know that in part I do it so that everyone around me knows - I am not better. I am not over my son dying.

In some ways, I felt that I was appearing too 'good' to the outside world and I wanted them to know that I was still hurting.

problem is - no-one ever notices.

So it's rather pointless really.

Yesterday I spent the day redesigning my blog. I needed something brighter, something happier. Because while my beloved son dying shook me to the core of my very being, it did not kill me. And I need to brighten up my life and my outlook before I should even consider having another child. That and my surviving son needs me too much.

This is not to say that in a few days I will not fall in a messy heap again - but for now...I think I'm okay. And this morning, in the post, I received an amazing gift. A beautiful bracelet from one of my new friends - the ones who understand me, who will never judge me, and who love Caden.

Thank you Michelle.

Life can be good - it just takes a lot to be able to see it when something as precious as your child is taken from you.

Wednesday, May 7, 2008

I am grateful

I am grateful to have the most incredible partner I could ask for
I am grateful to have my crazy, mischievous, often naughty 6 year old
I am grateful to have my sister in law who makes me smile and loves us unconditionally
I am grateful to live in a country with free healthcare
I am grateful to be able to access IVF even though we have to wait
I am grateful to live in an amazing area near the beach, in a street filled with children
I am grateful to have had the opportunity to hold and love my Caden
I am grateful to be alive

Friday, May 2, 2008

time off

I might be offline for awhile.

I feel like my heart is breaking and I need to take time to curl into a ball and pretend the world isnt turning.

My online friends who read this blog - thank you for your continued love and support.
I know me, I love the net way too much, I'll be back soon.
But for now, everywhere I turn there are babies and pregnancies.
For those of us who have lost a baby and are now ttc or pregnant - I am thrilled for you and your rainbow babies :0) But at the same time, it is reminding me of what I cannot have, and breaks my heart all over again.

So I'll be back when I'm a little stronger, to cheer you on.

Love
 

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