Jonah's Due Date

His due date, on all u/s, was September 15th *Emma's bday...Marshall was due on Summer's*. We would have had a c section, and had the date set as the first. So Tuesday would have been my little guy's birth day.

Please remember my little guy. Don't forget that anencephaly DOES happen, it is NOT pretty. It leaves broken hearts behind.

Dates and times

Dates mean something when you've lost a loved one. 4 years since Mom died. Marshall should be a year old. Jonah was due on September 15th, with a section on the 2nd. I hate dates. The calendar is evil!!

Things are ok in the grieving department. As long as Joe and I keep it to ourselves, the world is happy. So, that's how we are dealing at the moment.

Our biggest worry is finances, and that may lead us to the biggest decision I've ever made. I think we are moving out of state. I know the economy is bad everywhere, but I can't support us here. I think it's time to move to NC. But what breaks my heart is leaving Dad. Without my kids, I know he'll not last. They are his world! But our mortgage here is more than most people's monthly bills, and I just can't keep it up.

So, I'm just blah.

Working it out in hymns

I've had melancholy seep over me like a tidal wave this week. I miss my mother and my sons.

Hymns are helping me work it out, and I'm so glad that my mother, through her dying process, shared them with me. So, I share them with you!!

"In the Garden"...favorite parts: I come to the garden alone while the dew is still on the roses...and He walks with me and He talks with me, and He tells me I am His own.

Sweet Sweet Spirit....Stay right here with us, filling us with your love

there are many more. I'm just in a mood :)

Soon I'll have my son's reborns...babies to cuddle and love!! Woo Hoo!!

Marshall Jacob and Jonah Michael

I HAVE two sons that can only exist online or with my husband and kids. I go back to work on Monday, and it's there that I have to pretend they don't exist. My 'friends' are much happier when I don't talk about them get sad, so I'll find that smile I plastered on while I was working at Disney and continue my professional life.

Inside, I die every day. It's not that I want to pretend they are still here, but I want to be able to say out loud "I wonder what Jonah would have done. Would Marshall have played baseball?". Instead, I'll listen as friends drone ON and ON about crap that really is not even important (really, I don't care about your mani/pedis. I don't get them, consider them a waste of money and time...I don't care that you spent $200 on a $15 haircut!!). But, as long as they think I'm happy, they leave me alone and forget trying to save me.

This country SUCKS when it comes to grief. A week after Mom died I was expected to be "over it". (ppsssssssssst..it's been 4 years, and it hurts as bad today as it did then). I got a little longer with my first son, but with Jonah. HA!!

Meh. I hate going back to work after time off. It stirs up too much crap.

What to do?

Before us lies choices in life. I hate choices. I don't make decisions easily, and when I DO make them, most are mistakes!! Argh!

So, do we keep up this horrendous fight for survival? Things are bad! We could move and start over somewhere. That means having the courage to leave my father (my mother passed away 4 years ago), leaving the cemetery where Mom is buried, and starting over. Really, I have no ties other than Dad to this area. I can start over and it wouldn't affect me. But the kids...would they be ok? Chances are...yes. We'd move to NC, and that would take us closer to a family they, and I, have never had a chance to get to know. It's Mom's family, and to be honest, being there is like being with a piece of Mom, and I would love to do it.

That would mean the entire family's survival would fall on me. Joe could be a sahd, and get the kids off to school, etc. But can I live with that weight? I don't think so. I want Joe to work. I just don't know what to do any more.

This economy is killing us. I am pissed that those who should have the money to spend can't spend it, and that makes it worse for those who need jobs from them. I don't know how to support my husband, and his business is dead. He needs to work. We need him to work. But he's kind of emasculated at this point.

We've been through enough! I was reading the book of Job last night and 'got' that praising him during the storms is important. I just am tired of the rain. We've lost Mom, the boys, and now our way of life too. Really? Do we deserve this?!

Passive Aggressiveness Sucks

I'm so passive aggressive sometimes it's ridiculous.

See, I'm angry. I'm angry that in the world of anencephaly mothers who had to make a heart breaking choice are pariahs. Do you think any of us said "We're going to have a freak of nature of a kid. Let's kill it!!" and had a party? Really? That's just ridiculous.

Let me take you into the ultrasound room that day. I was scared shitless, as the numbers from my quad screening showed a positive hit on NTD's. Joe was sure everything was going to be fine, but I just KNEW that something was wrong. We looked at the screen, and we saw our son. The tech said nothing but point out his features. She went to get the dr., and his countenance fell. He began with 'In the world of NTD's there's spina bifida...." and I heard nothing until he got to "anencephaly". He showed us. I screamed. Joe lied to me. It wasn't fine. 45 minutes of gut wrenching talks and crying. Then we decided that no matter what, this baby wasn't getting an autopsy. No one was going to destroy my child's body. We opted for an amnio.

When the dr. drew back the needle, his already sunken face almost melted off. "Oh no..no, no" are the words that slipped out his mouth. Then he began to explain what he knew already upon visual inspection of the life giving fluid. Turns out that the amniotic fluid consisted of 40% of his blood and mine.

We went home just to talk about what we were going to do. Joe, my husband, and father of my children, deserved to have input too. Were we going to let him choke to death? Were we going to continue carrying this little one and get the other children confused as to what the final outcome would be? Could we continue the pregnancy not knowing?

Induction was hell.

I am tired of the sanctimonious "Oh anencephaly was SUCH a blessing. Oh aren't I a hero" shit. I could get cruel, but I won't sink that low. Mommies that carry to term (well, when they are rooted in reality) go through HELL. Exalting this defect is a form of denial. There's not a realistic mommy out there that Thanks God for anencephaly. We thank God for our children. We thank God for the time we have with them. We curse anencephaly. Without it, we'd have our children.

Ladies, pop a pill. Get a script from your dr. Tell them an anencephaly mom sent you.

Thanks!
Heather

From anencephalie-info.org

What role does Folic Acid play in NTD prevention?

Folic Acid is a coenzyme. It plays an important role in many metabolisms. The developing unborn child needs it to grow cells, tissue and organs. During that phase, the folic acid requirements are higher than usual. As far back as 1976, scientists noticed that women who gave birth to NTD babies had low serum rates for folates and low vitamin levels in their red cells. In 1980, Professor Smithhells from Leeds (UK) was able to show that an additional intake of 0.4 mgs of Folic Acid before and at the start of a pregnancy significantly reduced NTD rates. This finding was confirmed by many other serious clinical studies using large numbers of women (over 250 000). The conclusive proof of the preventive effect of Folic Acid, even for women with no NTD history, came when a Hungarian study showed that, of the 2014 women who had taken additional Folic Acid, none developed an NTD, whereas, of the 2052 who had not, 6 cases were detected (Czeizel and Dudas, 1992). Recent research on NTD pathogenesis suggests that disorders linked to methioninesynthase activity could be one of the factors involved. This enzyme transforms homocysteine into methionine. To do so, it needs a methyle group which is provided by Folic Acid intake. If this transformation fails to take place, be it because of an enzyme anomaly or lack of Folic Acid, homocysteine levels increase. This would appear to prevent the closure of the Neural Tube. An additional intake of Folic Acid, coupled with an intake of vitamin B12 can rectify this anomaly which is in part connected with enzymes. Other studies have also shown that further anomalies such as heart malformations, lift and palate clefts and urethra malformations can be prevented by an additional intake of Folic Acid (Czeizel 1993, Antony 2000).

At what point and for how long should one take Folic Acid?

Folic Acid should be taken at least 4 weeks before a planned pregnancy.

NTDs are birth defects that occur between the 20th and the 28th day after conception, before most women know that they are pregnant. Because about half of all pregnancies are unplanned, it is important to include at least 0,4 milligrams of folic acid in every childbearing age woman's diet. However, for those women fortunate enough to confirm pregnancy very early on (i.e. 14 days post ovulation), and who have not been taking Folic Acid supplements prior to conception, you should begin immediately as there still may be some time for the supplement to benefit the developing embryo. Given that many pregnancies are not planned, the best way to prevent these birth defects is for all women of child-bearing age to ensure that they are taking enough Folic Acid everyday.

Women also need more Folic Acid during pregnancy and breast-feeding. Hence it is wise to continue to take pills after the critical moment when the Neural tube closes.

How much Folic Acid should one take?

0.4 mgs per day, in addition to the folates present in food. Multivitamin supplements containing less than 0.4 mgs of Folic Acid should not be taken in higher dosage in order to increase Folic Acid content. Too high an intake of other vitamins is harmful.
Prof. Andrew E. Czeizel presented a study in 2004 which showed that multivitamins containing 0,4 - 0,8mg of folic acid were more effective for the reduction of NTDs and other congenital abnormalities than high dose of folic acid.

My Shoes

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger women.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

~~Anonymous~~

Marshall Should Be One Today

Cakes shaped like trucks and balloons fill the air
and mothers hold their kids without care
as the sound of laughter surrounds all who are there...


I close my eyes and wish you were here
then I open them and it's just not meant to be.
Tomorrow should be a grand day for all here
instead I'm the one remembering with tears.

We chose the 11th because it follows the tenth
and a birth would be a great way to offset her death!
You didn't make it that far and we had to say goodbye too soon
but that doesn't mean I forgot the cake and balloons.

This day will always be a reminder of what was lost...
our first son who was taken at such a great cost.
So today, as I celebrate what should have been your first
I just want you to know that for you, my soul thirsts.

Anencephaly is the New Cool

I don't get it. I had hardly heard of it before we got our Dx. Now, it seems like it's everywhere. There's a music group with the name. A kid thinks it's funny to blog about an anencephaly baby in his pocket. A mother, instead of taking care of the child she bore, put herself and her child in the limelight then bitches about how others see anencephaly. A young kid tolls forums looking for pictures of "frog" children.

There's nothing to like about anencephaly. It's not glorious. You can't wrap your child's head and pretend your baby is normal. You can't look at a picture of your baby's u/s and make the brain appear. Jonah had a huge protion of his brain missing. He was bleeding into his amniotic sac. We knew that either our baby would die during birth or after. There was no "what if" about it. Buying urns instead of buying bedding. What is so glamorous about that?

I want to turn everyone's attention back to where it should be. Prevention. Just as there are walks to cure breast cancer, campaigns to stop lung cancer...there should be a strong focus on prevention. Folic acid could prevent another mother from suffering this hell. But now I, and others, are being judged because we want to prevent anencephaly. Stupid. When are people going to wake up and realize that there's nothing pretty or glamorous about this?!!!

And the Journey Continues

This is my oasis in the desert. Here is where I come to be me and release what is stored up.

So this is going to get ugly, but it's my blog, so there!! LOL.

Since we lost Jonah, I've been struggling to reconcile quite a few things.

First, my grief has been ugly, but I've been outright with it. I DON'T understand why mothers are supposed to grieve in private. The minute you take it out of the house, you open yourself to the abuses and ideologies of others. My grief took me to the bounds of hell, and showed me that our society needs a great deal of education. A grieving mother should not grieve in private. She owes it to her child to spread the grief so that others can understand THEIR loss too. This world lost out on two wonderful little boys. I did not choose stillbirth. I did not choose anencephaly. I choose to keep them in the forefront because they did exist, and they have made a difference.

Second, I am not the happy go lucky Heather I once was. No amount of therapy, drugs, or "let's make Heather forget" trips are going to make Heather come back. In the last 5 years I've taken care of my gravely ill mommy, watched her die, gave birth to Reagan, and got pregnant and lost Marshall, and got pregnant and lost Jonah. I can safely say Heather of old is 6 feet under. That's not to say I won't learn to love life again. But no one, and nothing, is going to push me into it.

I have another rant to go on, but I have to figure out the wording. I'm pissed that anencephaly moms are having to watch what we say and how we say it because a zombie like legion is trying to tell us what to say, how to say it, and why we say it. I'm over it. I HATE ANENCEPHALY. It is not now, nor will it ever be, a blessing. I hate it. I will fight until the day I die to wipe it out.
If you want to believe that means I wish I never had Jonah...then you need your head examined. I want to prevent anencephaly, cancer...any of the hell that I've been through. It makes me human. TRY IT.

I never thought I'd say THIS, but I have met the one Christian who would make me high tail it from Christ. And she's held up as an example to humanity.