New Year, New Goals, New State of Mind

Since today is the last day we have in 2009, I wanted to reflect back on some of the good things that have happened in the past year. The year's end has been anything but happy and i'm definitely ready to step into 2010 with full force. However, before this year ends i'd really like to go out on a somewhat positive note. Here are some of the positive things that have happened in the past year worth mentioning:

- I was able to visit a few new places this year and explore the US a bit more
- Celebrated 1 glorious year of being married to a lovely man
- Our oldest fur baby celebrated his 12th birthday by enjoying Amir's homemade dog food cake
- Amir and I enjoyed a lovely trip to California, saw some dear friends and visited some beautiful sites
- Even though it didn't work out, I got pregnant for the first time
- Became more confident in my massage ability
- Found out when i'm face with a tough decision in a high stress situation, I can make it
- Discovered what I really want out of life

Some things I hope for in 2010:

- I hope to pick up my camera more and get more into photography
- Focus on being more independent jobwise
- Move to a place where we are surrounded by good friends
- To be happy
- Get certified in pregnancy massage, possibly certified as a doula
- Learn to become a better cook
- Read more books and learn more
- Turn the tv a little less

Even in the midst of all the insanity i've been thrown, i'm trying to move forward and make my life better than it was a year ago. This is probably something that we should do every year, think about what can make our lives and ourselves better. Therefore, if there is ever a child in our lives we'll be fully ready to welcome her/him into our positive enviroment and happy life. Happy New Year !

2 weeks too Late

Just when I am actually starting to feel about 1% better, I get a letter in the mail to make me relive it all again. Today I recieved a letter from my insurance company that says now because of the Predetermination request sent to them from my midwife's office, they decided that they will cover my induction procedure. Only they have sent this to me 2 weeks TOO LATE!!! This is so frustrating to me because this was information that I needed weeks ago. The state of Illinois has a law stating you can only terminate your pregnancy up to 24 weeks and today I am well over that limit. It would honestly have made me feel better if the letter said that they still wouldn't cover it instead of now telling me that it is medically necessary. I knew that it was medically necessary weeks ago, but they didn't seem to wanna hear it. I was told to have my midwife's office write Urgent on it which they did. However, the information that I didn't know until today was that even if you write urgent on it, they stil have between 2 to 3 weeks to give you a response. I am just so frustrated by anything having to do with my inusurance company. I know that inusurance companies are businesses and they are in it to not to pay for as much as they can get away with, but the people that they are dealing with are people who have to live with their decisions every day. Just makes me wish that we lived in a world where people actually cared about the well being of other people.

Attempting to Heal

I don't really have a lot to say at this point, other than I went and got a memorial tattoo yesterday. I wanted to somehow incorporate a heart, her name, her disease, and the dates that she was around. So that's what my tattoo artist came up with. I'm really happy with it so far. I sat for a little over 5 hours, and there is still a little bit more to do, but i'm really happy with what i have so far. It was very painful, but worth every ounce of that.
It's been not quite two weeks since Augustine was with me and it is starting to feeling as though it was a century ago. I really miss her so much everyday and I know that she's around me in spirit still, but that's just not enough for me. That is all that i'm gonna get so i'm trying to deal with that. Today was my first day of seeing a counselor which was good. It felt good to talk to her about my situation and just get it out. Just trying to start the whole healing process

19 weeks 6 days

So there are still a set of my pregnancy photos that were never put up. They are the last ones of baby Augustine, so I wanted to go ahead and put them up so that I will have chronicled her whole journey. It's been 10 days and I am missing her more than ever. Not a minute goes by that I don't think of her.

Something To Share

Ran across this poem today and just wanted to share. I didn't get a chance to really know Augustine, but I feel like in the past month she has taught me SOOO many things I would not have learned on my own.




I Am the Child

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of – I see that as well.
I am aware of much – whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world’s standards -
great strides in development that you can credit yourself.
I do not give you understanding as you know it.

What I give you is so much more valuable – I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own,
working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don’t learn easily, if you judge me by the world’s measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the child with a disability.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the child with a disability.

- Author Unknown

Almost a Week

So it's almost been an entire week that i've now been without Augustine in my life, and I have been feeling so emotionally unbalanced. There are times that i'll be completely fine and even be talking about this whole situation without even a tear falling to my cheek. However, at other times, I can hardly even speak of it without turning into a faucet. I don't know for sure, but I do have a feeling that these emotions are somewhat normal. Or at least I hope that that are anyway. I've decided to go talk to a counselor about this whole situation because I think it will be beneficial to talk to somebody who has experience in this area. I know that I need to move on with my life, picking up all the pieces,and I feel like she will be able to help me move on. In a way, I feel like being sad and mourning this loss is paying respect to my dear little girl. However, it's probably not the healthiest for me either to keep putting most of my focus on it day after day and not much else. I don't have any sort of network of friends here so i've basically been here at home alone left with my thoughts and feelings. For someone like me, this is not the best because I will just keep thinking about things again and again until i'm going crazy.
I am lucky enough to have a few things coming up that will keep my mind occupied.

-Going to see the family for xmas and good food
-Being able to celebrate the holidays with some good wine
-Heading to Las Vegas with mom and a fabulous massage
-A new tattoo in the works
-A new nosering in the works

So i'm hoping that things these things will keep me occupied for a little while to enjoy the holidays. I hope that everyone has a merry christmas and hopefully we can all get to our families safely with all these crazy winter storms.

She was a Girl

Found out that Augustine was a girl.

3 Days

3 days have gone by since Augustine passed away and I feel lost. I know that this would be the perfect time to find a project to bring all of my attention to, but honestly, I just don't care. At this moment in time nothing really has much meaning. I know that life goes on and as time passes things will possibly get easier, but at this moment nothing really matters much to me.
There is definitely a tattoo in the works, that I hope to get as soon as i'm off of these meds, but I find it hard to focus on coming up with ideas for it for longer than 5 minutes. It also doesn't help that I can't draw. Found some cool photos of things online, but still wish that I could draw some things out. Probably even if I could draw it would be hard to find my focus right now.
This may sound dumb, but the more days go by, the sadder i've been feeling because that may be less that I remember how my baby felt when she was kicking around in my stomach. I miss everything about being pregnant. Being tired, hungry, reading all the good pregnancy books, and I even miss the heartburn. I just want all of those feelings to come back because it means she would be back with me again. I know that i'll never forget about her or how she felt, but I feel like something has been taken from me. Something that i'll never get back.
The feelings that I feel May possibly lessen over time. However, the horrible sense of losing a child will stay with me forever and I am now part of that list that nobody wants to ever be a part of. Nobody should ever lose a child. Even though we didn't get the chance to know our child personally, we still grew to know her over these 5 months and were looking forward to those drawings that she was gonna put all over our refrigerator and all of those things that we were gonna teach her. Those feelings of loss will never go away.

Goodbye Baby

Yesterday Augustine Alexander passed away. It was the saddest, and most tragic day of my life. I know that the decision we made was the right one, but I will always be saddened by the fact that my first baby did not make it. There are really no words to express how horrible and empty I feel right now. I miss having her in my belly feeling her moving every now and then, even though I know that she wasn't made the way she was supposed to be. In my mind she is perfect, and has affected me in a way that I am forever changed.

Kicks

I am already missing her kick, even though it's not all that often. That is what I will miss the most about my little one.

Getting Up

Over the last week i've experienced every emotion that you can possibly imagine. I'm not gonna go through the whole list and write them all down. If it comes into your mind, i've probaby been through it.
There are really no new details upon the last few days, other than my Midwife's office is filing an appeal with the insurance so all we can do it wait on that, and yesterday I got an amnio to see the exact details on what is really going on inside my belly with this baby.
I'm really needing to use my art to express how i'm feeling. Photography is something I need to be doing instead of sitting here at the computer researching and constantly obsessing over this whole situation. However, I can hardly bring myself to even take the camera out of the bag. Nothing really is motivating me right now. On the other hand, Amir has created three new songs since we found out our horrible news. I guess that's the difference between us. I'm trying to become more motivated to find something to fill that void right now, but sometimes the feelings are so strong it is hard. The feeling of positivity from all of our friends has been amazing and that is something I need to use in this moment.

Never Saw it Coming

It turns out the we were wrong with our prognosis from earlier. What our unborn child suffers from is called Holoprosencepaly, meaning that the brain hasn't formed properly, and because there are missing parts to the brain this has affected the forming of the face.
As of the other day, my plan was,because the child will never have a life where it is even able to be conscious, that I would go to the hospital to be induced and birth the child. However, yesterday we learned that the insurance will not cover this procedure because my life isn't at risk. What they don't seem to understand is that my life is completely at risk because in the next 4 months ,and maybe even more, all of the emotional stress can and probably will come out physically.
The whole thing with the insurance still shocks me. We went through many avenues with the insurance. We had my husband's work call from the corporate level. We had my midwife call. We had my midwive's financial advisor call and nothing came of it. So now i'm forced to go through this pregnancy until the end whether the baby dies in utero, or comes out alive. This is a completely life changing situation that I never saw coming. I guess that nobody ever would.
If anyone reading this knows of any support groups with parents of children with this horrible disease i'd appreciate to be informed on this information. I'm doing as much research as I can and trying to live everyday just as that.

Forever Changed

The other day the most horrific thing that you can possibly think of happened to me and my husband. We went to my midwife appointment filled with excitement about finding out whether our baby was gonna be a boy or a girl. Turns out what the doctor told us would forever change our lives. Our child has anencephaly, which means that part of their brain never formed, and the top of their skull is also not there. Aside from this the little one was going to have extreme cleft palate, the eyes were extremely bulged out because of the non formation of the skull, and there was not a nose. This is something that nobody goes to the doctor expecting and when he told me I thought that I was in some sort of extreme nightmare. They had us do a level 2 ultrasound to make sure that what they saw was right. It was. My options were to carry it to term or end it now. I really respect all of the women who can actually go through with carrying this out fully, but I cannot. I am not made that way. My child will be born deaf, blind, and never consious. The only reason it can even breathe and have a heartbeat is because that part of the brain actually developed properly.
I am trying to stay as positive about this whole situation as I can, but at times I find that brutally difficult. It's hard for me to take that I'm a really healthy individual who did everything right (or so I thought), and still had something this awful happen. Especially when I see other pregnant women not taking care of themselves, eating fast food constantly and drinking soda. But I cannot focus on what they are doing, as I am me,and need to worry about myself and come to terms with this whole thing.
I'm terrified of being induced because then the baby that is in my belly will no longer be with me. As much as it hurts me when I feel him kicking I love it too because soon I will not have that feeling at all. I loved this baby more than anything and shared so much with it these past 5 months. It's hard to imagine going to the hospital to "birth" this baby, and coming home empty handed and no longer pregnant. There is such an emptiness that I feel that I know will never go away. This is something that I will carry with me for the rest of my life, even if I do have another child. This was my supposed to be my first born, the first grandchild, but it will never be.
Mostly, i'm gonna miss carrying the little one around with me in my everyday. We thought that we made it halfway, but mistakenly fell short. Even though this child was never meant to really experience life, we still have gone through so much together and i'm gonna be extraordinarily sad to see it end this way.

RIP: Augustine Alexander
August 2009-December 2009