I don't want this place to be about my pain. But I'm not going to lie - it's tremendous. I honestly don't know how to get through it in some moments. But you just have to keep on going.

Carry on, I guess. Sad that life can be boiled down to an everyday meme.

It's rough inside my head. I managed to give a presentation yesterday, spoke about Henry and our situation, in class. It's for a prenatal diagnosis support group. Because people shouldn't feel so alone.

I'm told that I'm not alone. My neonatal hospice nurse tells me that all the time. But, I still haven't spoken to anyone who has experienced a similar situation. I want to institute a program where patients and families can connect, and find comfort. Maybe even hope.

I'm having trouble remembering to take my prenatal vitamins now. I wonder if this is all in my head. I realized this morning that I haven't taken them in days. Part of me wants to shrug, and give up. Another part of me rages because I feel like I'm sabotaging him - that I'm intentionally cutting his time short. I want all the time I can have with him, but I don't want him to suffer. How's that for a dilemma?

I'm so torn. I hurt so much inside, but I can't give in. I think that if I give in, I'll never come back out.

Genetic Array!

The genetic array came back early!

Initial results state that it's.. clean! No genetic issues found. So, what does this mean for us? It means that Henry's holoprosencephaly could be a fluke. Just something that happens.

It means that, if the single-gene checks come back clean as well, that we may be able to try again. When we're ready. Amelia may still get the chance to be a big sister.

It seems horrible to think about another child, now, but.. it's a relief. If Henry's testing comes back genetically clear, then we won't have to worry about Amelia when she gets older -- could she be a carrier? Will my daughter experience this situation?

I met with a neonatal hospice coordinator yesterday. Such a wonderful person. I try to remain clinical, but breakdowns happen.

We're not going to have enough time with him. Not nearly enough, but every second will be cherished.

I spend 99% of my days trying not to think about what's going to happen.

Like how Henry will die. You know, that part.

Today is harder than usual. I imagine bathing him, holding him. Watching him fade away.

This is so much harder everyday.

An idea.

I found something that made me feel.. I don't even know.

It's called a spirit tree.

When Henry passes, we can take his ashes and use them to grow a tree. And then plant that tree -- and he can grow big and strong. It makes me so happy to think about!

My boy can grow up, in a way. We can do our family pictures under his branches. I think it's absolutely beautiful.

Jason's worried about me. I don't want him to worry, but if I don't know our plan in advance I just know I'll muck everything up.

If I don't have a plan, I'll worry. It'll eat at me every day. I'm not sure I could survive the next couple of months.

He's kicking now. I'm taking this as a sign. I hope he likes it.

Seven.

When I was seven, I my grandfather -- my dad's dad -- died. With him gone, I lost my entire paternal side of the family. I've only recently been in contact with two - yes, count them! TWO! - members of that side. One day, I was loved. The next, people that *I* loved turned their back on me. And you wonder why I have such bad abandonment issues. If I'm left behind - even unintentionally - it's like a chasm has been opened in my chest and I lose all ability to function. Breathing is even difficult. I'm terrified of not pleasing my family - because they can leave me, too, just like that.

I've been to a counselor for this before, too. But she stopped seeing me. I know exactly what my issues are. I know how to work through them. It doesn't mean I don't still have open wounds from that betrayal  At such a young age, it's become part of me. I'm insanely jealous of people who are close to their families. I still feel so completely isolated - because of my age with my siblings and because of distance and everything else for the rest of them. I'm told I'm loved. I just don't know if I really believe it in my heart.

With Facebook, some of my dad's family friend'ed me. I was so excited - they wanted me back! But.. no. It was just to see how well they're doing. I wasn't invited to anything. I wasn't contacted. Their love for each other, their family, was just dangled in front of me. Something I could never have. I couldn't take it - so I de-friend'ed them all. Except for my aunt. I actually talk to her, and see her.

It was actually hurting too much to even look on Facebook.

At seventeen, I lost a good friend. Maybe I loved him - I don't know. I was a teenager. But it delivered such a blow to my mind that I kind of lost it. I became someone else. I'm healed from that, finally. Never going to stop missing him - and the others that have passed from my life.

And now, twenty-seven.. fuck twenty seven.

June is hanging over my head like a death sentence. I'm trying to do my best to cope with Henry's condition, but I know it's going to be so much different once he's here. Once he's gone, will I be the same person?

I said the s-word in yesterday's post. My knee-jerk reaction is to go back and delete it, edit it completely out, but I feel like that's just an outright lie. I have considered that as an option, in the past, but never really thought it through -- because of my daughter. I love her with my whole heart, and can't imagine her growing up without me. Not to be arrogant - but I've known people who've lost their parents at a young age. It's not healthy. It's not the best for her. And she'll always have my best. Ultimately, it's a lie for me to ignore the fact that it's crossed my mind. But it's also not okay to just leave it at that -- I feel like an explanation is owed.

Donation

I seriously consider organ donation as the only way to go for our particular situation.

If we didn't have the option to give other people life, I'm not sure that I could mentally make it through this journey.

Just think - our Henry, when he passes, will live on in so many other people. He'll be the reason your nephew gets to go to kindergarten. He'll be the reason your coworker's daughter can take dance lessons.

I don't know who will benefit, but I know that we'll have the power to change lives for the better. I think that's what keeping me from suicide a crippling depression.

People keep on telling me I'm so strong. How is this strong? This isn't anything I ever wanted to be tested in. I think people think it's my strength, because it's a situation you can't even begin to imagine. I'm not trying to be dramatic here - there are aspects of Henry's holoprosencephaly that I never even considered before. I think anyone could get through this if they had enough support. There's a light at the end of the tunnel -- even if the end means burying your only son.

A number of the responses I've gotten from the Facebook posts are endearing, and supportive.

But I don't know how to feel about the ones that say that they're praying that he proves the doctors wrong - that so and so had a similar situation and they blew the docs away. I feel like that's a little bit wrong. We've done everything we can to get a solid prognosis - numerous ultrasounds, fetal MRI, genetic and chromosomal testing - and we're confident in our providers. Not to mention having seen the MRI ourselves - and the startling fact that most of his brain is just not there.

I feel like it's a false hope. It's praying for a miracle after the fact -- God can't undo things that He has all ready done. I just pray for strength to get through.

Part of me daydreams that maybe Henry is meant for better things -- at least, to be part of something greater. Maybe his organs will allow other children to live, to go forth and make their positive marks on the world. Maybe he'll allow someone to be President.. or just a really good person.

I can't imagine a person going through life, knowing that they have organs donated to them - sacrificed for them - and becoming a horrible person. I just don't think that's possible for a human.

Amelia and I went with Jason to bowling last night. They had a blast - she loves the attention from all of the boys. Amelia and Daddy were dancing and playing down by the lanes, and I started to tear up. Jason won't be able to bounce Henry on his knee. Henry won't be able to laugh. It's just heartbreaking.

My emotions are like a rollercoaster. Cliche, I know. But it's like I can change the tract. If I'm going up the 'hill'/getting emotional, I can usually ignore it and take a moment and slam down my barriers back in place. I don't have to cry. But if someone (like my amazing husband..) asks me about it, continues to prod me into that emotional place, it's all downhill and I'm crying in the restroom for twenty minutes.

I hate crying in public. People always assume that you're just a dumb drunk girl. Or that someone broke up with you. Assumptions that I shouldn't even care about, but I find that I do.

Sigh. I just need to .. skip past this entire year? I don't even know if I want to miss that.

I put it on Facebook this morning.

Maybe I shouldn't have. I don't like to crush people. But so many people are all ready saying.. maybe he could prove the doctors wrong. Maybe there'll be a miracle.

They didn't see the MRI. I'm honestly surprised that you can live even days with that much brain physically missing.

I caught myself crying this morning. It was a hard one - Amelia woke up as I was getting ready, and cried until I snuggled her. Then she sprang up and started saying, "Play!"  She tried to go downstairs. She was ready to be up. She's been getting up at 6am for the last two days; why would today be any different?

But of course, Jason yelled at me. It's my fault. I can't leave my daughter sobbing when that's all I want to do.

I'm just getting really frustrated. I'm having nasty posterior pelvic pain with Henry pushing on my nerves which makes it hell to do stairs, and even walk at times. I'm just drained. I have a proposal to complete, and never seem to get any time to get away. I'm getting really angry. I don't feel like I have any support when I need it. It's really hard to carry on.

Not today.

I haven't cried today. I consider that a victory. I've teared up a few times, but held it back and regrouped.

I feel that if I cry constantly, I'll dwell on the situation and drop off of the face of the earth. By not crying at random times, by having even a little bit of composure, I feel like I have a small amount of control.

It takes time. And a lot out of me.

If life were a movie.. Now is the point that I'd wake up in a mental institution, and be glad of it. Even being institutionalized would be a pleasant comparison to my current situation.

One moment for an entire lifetime. How long will that last for us? How long will we have our boy?

Will my family be there? Will my husband's family? Or is this going to be swept under a rug - not important because it doesn't have a happy ending? Will I be able to handle this?

Honestly, after the response we got from some of his family.. I don't know if I want them anywhere near around me, or my daughter, ever again. A shrug is not the correct response to such news.

Yesterday, I was sitting on the floor playing with my daughter. I looked her in the eye, and said, "I love you." She said "I love you!" and gave me a kiss. It was the first time she's ever said that. I sobbed.

Isolate. I feel so very isolated.

I know that there must be other women feeling the way I do. I just can't find them.

Some days I just want to be alone. I find that reading helps, like it's always helped when I've felt sad. I read a lot. Now I feel like I'm analyzing myself. Am I always depressed, and just ignore it/block it out?

Anyways.

I took my lunch solo today. It was wonderful. I need to be alone today, not because of anybody or anything - I just need to be quiet inside, for once.

Oh,  it's Valentine's Day.

This doesn't seem appropriate.

I'm trying to reconcile myself now, so that the grief won't be so horrible when it's actually real.

I'm going to have a son. He will be alive, in my arms, and perfect. He will die. I will lose my child.

If I keep on saying it, maybe it'll help me build up.. something. Toughness? Resilience? I don't even know. Or maybe I'm just hurting myself more.

But it's not like I can just forget about it. I have a large, kicking reminder of it with me at all times. I can't just put it out of my mind and not think, I can't just not love him.

I keep on biting through my lip, trying to wake up. Please let this just be a really crazy nightmare.

Going Live

This is the age we live in -- I actually have to worry about hundred of friends reacting to our news. I'm drafting something to put on Facebook on Saturday or Sunday. It's far enough from Valentine's Day to allow people to have a moment before I spew horrible news all over.

I'm worried that once 'everyone' knows, I'll be expected to cry more. People look at me like I'm insane when I explain what's been going on. But, quite frankly, I need to function over the next eighteen weeks. I can't just dissolve into nothingness because this is happening to us. Life goes on, even as we mourn. I find that if I take a clinic approach to things, I am better equipped to get through the day with minimal tears. I can't be a weeping mess over the next four months! I would probably lose my job -- even though I have an amazing support system there. I'm lucky.

It's okay when I'm with other people. I can forget. When I'm alone.. I can't escape myself.

Amelia's eighteen month checkup was today. She's absolutely perfect. I all ready knew that.

Coping Mechanisms

I'm not a very organized person. I have a toddler; thus, my life is constantly in chaos.

When I'm spiraling out of control, I need to have some sort of grasp on what to do. I need a plan.. like an exit strategy. Right now, I'm just waiting. We don't know where (or how) I'll have to deliver, we don't know how long Henry will stay with us, we just don't know anything right now. And it's driving me to distraction. I need to have a path to walk down - I can't stand just stumble along. It feels like that - if I'm stumbling, I'll fall. If I fall, I may not get back up. If I have a plan, a path to stick to, then I'm more confident and able to keep it all together.

The next eighteen weeks are going to be so bittersweet. 

When a friend of mine died (well, actually, I fancied myself in love with him.. but that's a seventeen year old for you) in my junior year of high school, I lost it. I became someone I didn't recognize. It took me close to seven years to come back to myself. I started smoking, drinking, taking risks. I skipped class - all the time. I drove recklessly. My friends didn't know how to relate to me, so I fell in with people who just didn't care. People who nurtured my depression. I did everything I could to dull the numbness. I met my husband five years after Rob died - and he anchored me, brought me back, showed me what love really is. He's still my anchor, and my heart. I'm terrified that I'm going to get swept away again after Henry's gone. I've finally gone back to college, gotten my life on track. 

That's why I'm thinking of enrolling in an intensive summer class. So, when I'm unable to cope, I can at least throw myself into school. Last time I didn't - and I very nearly didn't graduate. Maybe it's a bad idea. 

DNR

My husband and I agreed that a DNR is the right way to go for our son.

But he also made me realize just how hard it's going to be. We're going to have a perfect little boy. And then he's going to start failing.

I love him so much all ready. I know it's best for his quality of life, but he's still my son. My Henry. I'll be able to kiss him before he passes.

I'm terrified that I'll lose it and demand they save him. But he doesn't have a chance in his first year. He's not suited to life - his brain is mostly missed.

But that's still my baby. My boy.

I know in my heart that I'm not going to survive this experience and continue to be who I was. I'm just trying to survive right now. I'm constantly two words from breaking down. Some days are better than others - and some days it's all I can do to get out of bed.

My daughter is a reason to keep going. She's my reason to get through this.

I'm afraid that I'll just lose myself and nothing will bring me back.

He's moving again.

A van pulled out in front of me the other day, and slowed down - like it was trying to get me to hit it. I was alone. I swerved to avoid that van... But then I wish I hadn't. That could have been my way out. It could have been the end, no planning needed.

I don't want to consider suicide, but I did kick myself for swerving. All of my problems, gone.

When he's asleep, and I'm not feeling him.. I just don't feel pregnant. I just feel fat.

That's all.

Is there anyone out there who's gone through this sort of situation?

From my research, I know that 60% of couples terminate their pregnancy once they've received a hopeless diagnosis. We had three days to decide, before we would have had to go to a late term abortion clinic out of state. I can't handle that, emotionally, nor can I can financially handle the burden of going out-of-state, and out of our insurance network. He's our son. I can't do that to him - I want to chance to kiss his little face.

We can't be the only ones. Right?

Can't stop.

I work in an OB/GYN clinic. Maybe 70% of my patients are pregnant, and come in enough to know me - and know that I'm pregnant. Towards the end of their pregnancy, I see them A LOT more - enough to know them on sight.

There are a number of couples that are due around the same time that we are due.. I keep on getting questions about his gender. Our due date.

"He's due in June. June 20th. We're very excited. His name is Henry."

I feel so canned in that response. It's what I say every day, all day long. I don't want to scare these parents, nor do I want to make them feel bad for asking. They don't know - they're not doing it to be rude. They are all genuinely kind and fantastic people.

While I am excited for them, I still feel sad. My Henry won't be in school with their kids. He'll be born as a perfect little guy, but he's expected to pass rather quickly.

We're waiting for the genetics test to come back. We're doing a full array, and if my insurance covers it, four individual tests for genes that normally trigger the HPE (hydroprosencephaly) in non-syndromic cases. One is call SHH - nicknamed Sonic the Hedge Hog. It's the most likely culprit, if this is due to a genetic issue.

We know it's not chromosomal. That test came back last week. Genetic means that we have a 50/50 chance of having another child with this issue. That we have another chance of losing them before we can even kiss their foreheads.

There's still a chance that this is random. I can only hope that the genetics come back clean. I just want Amelia to have a sibling, close enough that it counts. It's something I felt cheated of my whole life. Now, I have a wonderful family. But I was never close to anyone. It makes life difficult, even now, because I constantly feel isolated and alone.

Once upon a time.

Every morning, I wake up and wonder if today is the day that I'll finally break down and never recover.

I'm having trouble coming to terms with the hand I've been dealt. At twenty weeks pregnant, we found out that our son's brain has not developed quite normally. After a level two ultrasound and in-utero MRI, we had a diagnosis - a very severe semilobar holoprosencephaly and Dandy Walker syndrome.

When he's born, the countdown starts. It's very likely fatal, but there's a small chance of survival to a year. Although - so much of his brain is actually missing that he'll never be more than an infant. His body will grow, but he'll never do so much as lift his head.

I'm twenty two weeks pregnant this week. And I don't know exactly how I'm coping.

It's weird to suddenly be dreading a date that I once looked forward to with joy. I've been forcing myself to read up on cesarean deliveries, infant hospice care, genetic disorders and support groups. It still doesn't feel real.

Sometimes I'll dream about him, about what our life could have been like. It's only been two weeks - will this continue forever?

In my research, I keep on seeing the need to write down your feelings. A feelings journal. I guess that's what I'm trying to do - concentrate on making everything okay.

There are times that I feel increasingly pregnant. I still get morning sickness. I feel him move inside of me - little kicks and nudges that I now know are only twitching.

Amelia's starting to say more words now. Her favorite is baby. She carries her baby dolls around, singing "Baby.. baby.." She would have been such a fantastic big sister.