If’s and Fleeting Moments

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Today, I discovered that someone used the search term ” i have spina bififa occulta with a tethered cord and the doctors dont understand how much pain im in” and found my blog.

I tx’d for spina bifida – myelomeningocele, but it’s a gray area. Occulta, from what I understand, is the least “serious”.

If you are a child, surgery to untether is fairly common, but once you are an adult (or have an adult sized body), it becomes a controversial surgery.

It just kind of shocked me this morning, because when I started my blog, my biggest fear was that someone with SB when find it and be horrified with my decision.

And yet today, I’m ok with it.

If I had CTT, I would have been induced at 37 weeks around May 15th. Yes, I could have been cuddling my daughter right now, but I could also be planning her funeral. I’d probably be living in the Ronald McDonald House, near the NICU. I doubt I’d be at work right now.

And yet today, I’m ok with it.

Today has been the first day that I felt that I did something brave and good, that I saved my daughter from suffering. Today, I really feel that I performed my first selfless act on January 2nd.

I (and others) have been saying these things for months now, but today, this morning, I really, truly believe them.

I love my daughter with all of my heart. I miss her terribly, but for today, at least, I am not going to dwell on the what-if’s, because no matter what happened, I was not going to have the TLC Baby Story happy ending.

The weirdest thing that is that it took Game of Thrones to help me make this realization. My mom is in for the weekend, and she brought my books back. I started thinking of Jamie Lannister this morning, and his nickname of Kingslayer, and how he feels about it (and his actions that earned him the nickname).

And I found myself identifying with him. Other people may judge me, and it certainly wasn’t an easy decision to make, but I know why I made it, and I am relieved that I made it. My daughter will never know pain. She will never have to take narcotics as in infant. She will never have to find comfort on Google because it is too risky to have surgery to relieve her chronic, severe pain.

I had been dreading June 5th up until today, when I realized my my EDD had actually already passed. I was still mourning the loss of a healthy child, thinking that I could make it to 40 weeks. I think what happened with me (and is still happening, I’m sure) is that I went through multiple periods of grief. First, I grieved for my daughter, for my family, for myself and my husband, and lastly, I think I grieved my idea of what a pregnancy should be.

Up until now, I’ve struggled with the idea of loving another child as much as I loved her. How could I honor, the very person whose life I ended, and have another child who wasn’t defective? But that’s not why I terminated – I didn’t expect or need perfection. I did it for her.

So, for today at least, I can say that I miss her and not cry. I can smile because she is not in pain. I can forgive myself because I don’t hate myself.

Steel Magnolias

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In the early aftermath of termination, there was one movie that I kept replaying over and over in my mind: Steel Magnolias. Specifically, this scene right here:

I still haven’t been able to bring myself to watch this, however. I think I’m still too raw.

But this scene captures my grief so beautifully and completely that it’s hard for me to believe that a man wrote this over the death of his sister.

Sally Field captures me – my grief, my anger,  my desperation, my desire to lash out at everyone. The family made the decision to take Shelby off life support. I wonder if that is what happened to the author’ sister. Regardless, I feel like M’Lynn. I want to give her a hug and tell her that it gets better.

The people and things I get angry at now are almost trivial – I get angry at people asking me casually “How’s it going?” I get angry at people for for not valuing what they have and enjoying it. I get angry at people who would rather not talk about it all. I get angry with my husband for not taking care of himself. I get angry with my pregnant students who subsist on Hot Cheetos and Monster energy drinks. I get angry with my own body, which continually fails me.

I get so angry that I make myself sick. I can manage to keep it under wraps most days, or calm down through deep breathing or happy thoughts, but I worry one day that I am going to snap and say something that is going to be mean and hateful. It’s one thing for me to vent them here, but to actually voice them to their intended audiences would not be prudent or responsible.

At least I handle anger better than some of the other stages of grief. I’m just scared I’m going to get stuck here.

I thought I had published this over the weekend, but apparently, I forgot, so you are going to get two posts today!

Cybermunchers

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You know that scene in Fight Club where Marla is accused of being a tourist? Well, we have those in our on-line forums. Munchhausen’s by Internet. Wikipedia calls them Cybermunchers.

It starts out innocently enough. We all have been through hell and back on the TFMR boards, so we are used to gut-wrenching stories. But every now and then, one comes along that just doesn’t feel right. It could be the numbers don’t add up. That the post is a little too dramatic (or not dramatic enough). It could be the flooding of the message boards looking for sympathy. The repetition of information and posting in inappropriate forums. Diagnoses aren’t clear – rather, general problems are stated. They live in another country so their way of doing things is foreign.

But you don’t immediately recognize the poster for what she really is. No, you question YOURSELF first. How horrible of you to think the worst about this person! This is a person in crisis, and here you are, passing judgment! Are you jealous because her story is worse than yours?

And so you keep silent about it, because you don’t want to look like the asshole who is attacking a newly grieving mother.

But it just doesn’t add up. Ages get changed. Dates get changed. They start talking about life in the UK, which is something you know a little about. And slowly but surely, other people start mentioning it. The outrageousness of it all, the inconsistencies, the fact that the story keeps changing.

How much of an attention whore do you have to be in order to make this up? There was even one post where I think she had created multiple accounts and accidentally commented on her own post, giving herself sympathy so it seemed! I couldn’t be sure, as her writing skills weren’t very clear. She just has a tendency to repeat everything without making any new comments.

I think it’s just best to ignore in this position, otherwise I’d end up just adding fuel to the fire for not being supportive. I’ve noticed that she spends her time in other baby loss boards, specifically miscarriage. It just seems odd to me, because I’ve never pretended that I miscarried. I specifically spend time in the TFMR boards because I don’t want to pretend, and those ladies have been through what I’m going through. I don’t think she gets the reception she wants on the TFMR boards, so she spends all of her time on the boards that give her the reaction she so desperately wants.

It just disgusts me that someone would go around taking advantage of sympathy.

Update: This is also in the comments, but I wanted to make sure any new readers who don’t read comments read the update.

I did a little cybersleuthing and found her FB page – which seems to back up her entire story. Maybe it really did happen, but I still don’t understand the inconsistencies (read: lies) in her posts. If it is a hoax, it’s pretty complicated.

The whole situation is odd and unsettling, and now I feel like the skeptical asshole again. The only thing that I’m taking comfort in is the fact that I’m not the only one is has caught the lies.

My Mother’s Day Resolution

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I am *not* going to feel sorry for myself today. That isn’t to that that today is easy for me – it’s not. I’ve teared up already a few times, especially when GNR’s Sweet Child of Mine came on the radio station, though the tears may have more to do with the fact that I heard it on an oldies station.

So instead of thinking about the fact that I should be having a baby in 3.5 weeks (but whose counting?), I’m going to make a few resolutions for observation of this day when I do become a mother (not the positive thinking! when, not if).

  • When I become a mother, I will remember, recognize, and celebrate those who aren’t. Perhaps a donation to RESOLVE or even Now I Lay Me Down to Sleep. The Houston Area Women’s Shelter is also a prime candidate.
  • I will not expect people to treat me any differently when I am a mother. There is nothing special about me. I should be honored as a human being, not because sperm met an egg.
  • I will be thankful for my child(ren) and family (pets included!) who made me a mother. I will do something with them as a family. Go camping? A picnic? A giant water balloon fight? I don’t know, I’m not there yet, but I know that I will make it a day to celebrate my family.
  • I will remember my lost daughter.

For today, I will be gentle on myself and try to practice simplicity, patience, and compassion for the next week.

“Simplicity, patience, compassion.
These three are your greatest treasures.
Simple in actions and thoughts, you return to the source of being.
Patient with both friends and enemies,
you accord with the way things are.
Compassionate toward yourself,
you reconcile all beings in the world.”
― Lao Tzu, Tao Te Ching

 

Never Not Broken

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“Please shatter my heart and create a new room to hold limitless love.”
Rumi

I know I said in earlier posts that I’m not a religious person, but there is one deity out there that resonates with me: Akhilandeshvari.

Years ago, when I dragged my soon-to-be-ex-husband to marital counseling, I remember sitting in the counselor’s office shredding a wet, snotty tissue in my hands and my eyes wide open trying to hold back the tears that I knew were inevitable. I told her that I was incapable of love, that there was something wrong with me – that I was broken.

She told R. the next time that she met with him that this was the only time in her career that she cried. I don’t know if I truly believe that, but I do know that I had never believed anything as strongly as that until then.

I am broken and I will continue to break in different ways for the rest of my life. December 26th shattered me. I thought I could never recover from that event. After all, a broken plate that is glued back together again is worthless, right?

I am not a plate.

I am “never not broken”. I will always be evolving and changing, hopefully becoming a better person. I can make the choice where to go from here. Before, I was a terrified infertile woman who terminated her much wanted pregnancy. But I am choosing to put myself back together as a much stronger person than I was before. I choose to let light shine through these cracks and create a unique work of art.

My future, my family, my daughter – was shattered. All of my plans cracked and burst into a gazillion million bagillion pieces December 26th, 2012. It was over. My life was over. I had no reason to breathe or stop crying. I threw up for two days. I refused to shower out of fear of touching my freshly developing bump. I would never be the same person that I was on December 25th.

And that’s true – I’m not that same person. I feel different, as if I’m heavier. But I know compassion know in a way that others only discuss theoretically. I am a chapter in a textbook that philosophy students study. I did the most unselfish act in the world that I could possibly think of. If I could overcome terminating my own desperately wanted child, I can get through anything.

And that’s how I choose to redefine myself. I’m not completely done yet. There are days when my cracks don’t shine as brightly as I’d like them to. Sometimes, fractures happen. But that’s ok. Because I trust myself to transform into something better.

Right now, at this very moment, the night before Mother’s Day, I feel strong and powerful. I am supposed to take a pregnancy test on the 17th, and I had been fearful of that. Could I handle another BFN? Or what if it was positive, and I had to face twenty weeks of uncertainty and fear until the anatomy scan?

The next few weeks are full of triggers, and I didn’t trust myself completely until just now.

I can do Mother’s Day. I can do a pregnancy test next Friday. I can do June 5th. I can even do a child-free future.

I am stronger than I was on December 25th.

Strong has never been an adjective that I used to describe myself. Quirky? Yep. Eccentric? Yep. Creative? Sometimes. Brilliant? Oh, stop. You’re making me blush. But strong?

In a weird sort of way, I’m looking forward to those trigger dates – just so it will be something else that I will be able to have overcome and beaten.

In college, I was an avid D&D player. Did I say avid? I meant rabid. My character was the epitome of chaos, she was always changing, always unpredictable. She was a whirling dervish of confusion and disorder.

I’ve pretended to like change, but the fact is, I don’t change that much. I’m really pretty predictable. At least, I used to be. I don’t know what I am anymore. I’m not sure what next year has is store for me, and I’m ok with that. I’m not scared about moving to another country. I’ve always dreamed about living in another country. I’m ok with changing schools – I’ve had enough experience to know that I’m not working in Nirvana, and that if I were to change schools, I really don’t think I’d be working any harder than I currently am.

I have always taken pride in the fact that I know myself, but I don’t think I can say that anymore. I don’t know the person I am turning into. But I think I’m going to enjoy getting to know her.

Where’s my Cowbell?

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I have a slight fever. 100.67. And I feel horrible.

Leave it to me to get sick the week I played hookey!

I’m less worried about going to school tomorrow and more worried about the slight fever. I’m 4 dpo. If I am pregnant, what if this fever is enough to give the baby a deformity? A NTD?

Sadly, I know all too well there are worse things than a miscarriage.

I’m trying not to think about it so I don’t get worked up, especially since the chance of me being pregnant is so low this month, but I think this is where my what-if’s emerge.

Hopefully DH gets here soon with my Whataburger!

The Devil Tricked Me

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dorothyA friend of mine has a daughter (S.) who is a senior at a private Christian school. Not the kind of private Christian school that I attended – I’m talking about the kind that has human beings riding dinosaurs in science books. I suppose it’s progressive – they admit that dinosaurs existed, but I just couldn’t take the curriculum seriously once I saw the textbook featuring a happy family giving their pet dinosaur a bath. I’m not making this up.

In her religion class a few weeks ago, they were discussing abortions. S. is a very loving girl. She doesn’t do well with hate and guilt, so she was really bothered by all the talk of murder and damnation. So, she brought up my story. To show that abortion is not a black or white issue, and that people can still have abortions and be loving, good, moral people.

And the result was exactly what I would have expected – she was told that I still murdered my baby, and insinuated that the devil lied on the ultrasounds in order to tempt me to end her life. The “teacher” told her that my life was worth nothing and that I should have died rather than terminate (granted, my life was not at risk, but I think it’s telling that this woman thought that I’d be better off dead).

S. went home and cried that day.

It reminds me of my discussion and reading of Dante’s Inferno, specifically the Wood of Suicides. I can’t believe for an instant that the Christian God would send someone to Hell for suicide. I get that life is a precious gift from God, but I know too many people in pain who have attempted suicide to believe that they would be punished for escaping a life of suffering and torment.

Likewise, I have a hard time that even if the Christians interpretation of the Bible is correct, I really don’t think that I would go to Hell. Personally, I live my life by doing what I know if right so I can be the best person i can possibly be, without fear of retribution or doing it because of some perceived duty. I want to be a mother for personal reasons, not because of a quote from the Bible.

I grew up in a rather liberal church and spent years going to Sunday School, church, VBS, confirmation classes, religious camps, and Bible class, and chapel every day in my private Lutheran school – but I don’t ever recall talking about abortion, Hell, or damnation.

I think the first time I was told I was going to Hell was when I was in college, by a prospective student’s parent. I told her calmly and cheerfully that I didn’t believe in Hell. In fact, through an organization I started, I once tried to talk to the Christian organizations on campus how to witness to non-Christians because threats generally don’t work well with me. I welcomed people to ask me about my faith (or lack thereof) – I would welcome the LDS missionaries to my apartment and talked to the people on campus who would pass out flyers asking if I was “saved” or if I “knew Jesus.” No one was ever really rude, but once I flat out told them that I wasn’t scared of going to Hell, all conversation ended. I supposed they didn’t know enough about their audience to continue a conversation with me, and we usually parted ways and headed off to class amicably.

I think the point of that digression was to emphasize that I’m not afraid. I’m not afraid of God. I’m not afraid of Hell. I’m not afraid of karmic retribution.

Thank you, S., for sharing my story. I’m sorry that not all people are as sympathetic as you are, and I hope you never lose that quality. Some people are are just mean and close-minded, and don’t understand what it means to sacrifice your only child to prevent suffering and pain.

You give me a smidgen of hope for humanity. 🙂