Monday, July 30, 2012

Forget you, Olympics oo oo ooo

I am a huge fan of the Olympics, especially the summer version. I had visions of watching these Games over the last few days of my maternity leave (today would have been my first day back to work, assuming Blue Sunday came the weekend of his or her  EDD). I would have been whispering in the ear of a baby "mommy used to swim, may be you'll do that, too", "Aren't the hats the water polo players wear funny, would you like to try that some day, mom did it!", "Daddy used to wrestle, may be you could be just like him". Of course there is no baby. I am not "mommy" and hub isn't "daddy". We're just us. Babylost and alone.

I don't watch much TV and what I do watch tends to be On Demand ABC family shows (Bunheads!) or real life crime (The First 48 or anything on ID). This is how I avoided the vast majority of the "Salute to Moms" ad campaign by P&G. I saw a few of these on line while watching interviews with the athletes in the lead-up to the games, but they were few and far between and  easily ignored. Now that the Games have begun, I can't get away from them, and it is only day 3. There is one in particular that I need to become more adept at turning off. It is embedded below for those stronger than me, for the rest of us, a synopsis: It shows little kids about to perform Olympic events, surrounded by the media of the Games. Then a mother taking a nervous breath in while sitting in the stands. Then the text, "To their moms, they'll always be kids"






You know what I have to say to that? Cue Cee-lo

Ha, now aint that some shit? 
Aint that some shit? 
And although there's pain in my chest
I still wish you the best with a...
F*)^ you!
Oo, oo, ooo
Cee-Lo Green, F*&^ You

Monday, July 23, 2012

Let Her Cry

I'm having a hard time lately. 

"Hard" might be an understatement. 

Not like those first days, but only because the quality, not the quantity, is different.  It's an ache now, a sprain on my heart and mind, not the gaping hole from the first days. Better, I suppose, but constant and not as noticeable to others as the gaping, bleeding, oozing hole was. People feel safe talking about babies with me now- we have 2 more expectant daddies at work, (at least it isn't the women) both told me directly. People want to talk with me about their kids/ nephews/ grand kids/ desire for grand kids etc etc. I don't want to hear them, but it's been too long to feel this unsteady when others talk about kids.

My eyes feel blurry from tears, recently spilled or still hiding out where ever the tears come from. I am thinking about Blue Sunday, and Blue Sunday’s elusive, possibly fictional Little. I feel as if I’ll never have a living baby. It is making Hub crazy when I “talk like that”. But what if “That” is our life? It certainly is at the moment. We’re childless, not by choice, for at least the next 10 months (Hub is away for my fertile period this cycle). 

Hub and I were in a spat the other day because he upset me and because I struck back at him in a mean, grouchy way. Not my finest wifely moment. I missed a payment on a credit card- one that is in his name and I neither use nor carry. I ask him to remind me when he uses it (which is rare) so that I remember to pay it. He told me the day he made the purchase and then never mentioned it again- and I forgot about it. As always, the feud devolved into me crying about my stress and how I can’t be expected to deal with every single thing. And after hugging me and “making friends” Hub says “I think you need help”
I knew what he meant, but decided to give him the out and said “You’re right, let me know when you use that card, pick up around the house and start cooking dinner again”. He didn’t take the hint and clarified that he meant counseling.

Now, I’m not anti-counseling. I went for a spell in college and had a very positive experience. However, this isn’t something I want or need to be counseled about. I’m not “crazy”. I don’t use that term meaning crazy like riding buses aimlessly while yelling, tickling my face and stealing returnable bottles right out of the hands of fellow passengers (as our local character does). 
 
I mean I don’t think I am inappropriately sad, overwhelmed, frustrated or even pissed off. This situation absolutely, fucking BLOWS. I DESERVE to feel the way I do. I have earned the right to “wallow” as Hub accused me of or, as I like to call it, “commiserate”. He thinks it is unhealthy  for me to read blogs, chat with others on Sad Baby Chat Board and just generally, okay, Wallow. It helps me know I am not alone. It helps me know that my sadness is normal.
Also, I am terrified to be treated as if my loss isn’t a “real” loss. That my sadness is out of proportion for my situation. That this was just like an early miscarriage. I can’t be told that my baby’s life didn’t count because he was not born, because there are no pictures, no tiny hat, no sweet little blanket, no service. This isn’t out of the realm of possibility, this sentiment is out there in those blogs, on those chat boards. My baby, who I wanted- want- desperately, is not here and will never be. My baby was so sick I couldn’t honor the wish of my mind to meet him, if only for a moment, because my heart said “a mother protects her baby from pain”. And my heart was RIGHT. 

No one, no matter how qualified, can give me words to heal my heart and mind. There is nothing that goes that deep. I won’t be medicated, I fear that it would hurt yet-to-be-conceived Little. I just want to get pregnant and carry a healthy baby to term and through life. THAT is what I need to feel less broken. I need to know my body works. A therapist can’t give me that.
I said this to hub and he went on about learning coping skills and how no therapist would ever say those things about it not being a real loss even if they felt that way. I said that was the problem, I’d always feel like they are judging me. May be because I judge myself. 

What’s your take, invisible friends? 

Let her cry...if the tears fall down like rain
Let her sing...if it eases all her pain
Let her go...let her walk right out on me
And if the sun comes up tomorrow
Let her be...let her be.
Hootie and the Blowfish, Let Her Cry

Tuesday, July 17, 2012

Update on My (Lack of) Baby Making

**This blog is really not meant to be a TTC blog. The intent is really to put out to the world the emotions that come from terminating a much wanted child due to a medical cluster fuck issue. That said, TTC again is, for most, an inevitable step after a TFMR. I can't imagine ending the reproductive years on such an incredibly low note, though I know that is exactly what some people choose or are forced to do.  Mercifully, I am not in this situation. Blue Sunday's condition was a "fluke", I am reproductively middle-aged at 29 and have 6 years before I hit the AMA milestone. But I am terrified, that hub and I have become infertile.**

It is CD4, and it sucks.

This was our 5th cycle "really" trying and our 6th overall. If I was 6 years older, I would be labeled infertile and be able to enter the world of ART. I know that the distinction is made because those of us under 35 have more time left to conceive, and so additional resources are provided earlier to older women- but it still sometimes seems strange- you would think it is the sign of a bigger problem that people have trouble conceiving at a time when it should be easier for them to do so.  In any case, 6 more months until I can get some real testing paid for by insurance.

My new obsessive thought (since the "I was harmed in surgery" idea has been  [mostly] put to rest) is that HUB is the issue. Without giving too much away, since the community he runs in is tiny, he is in the military and deals with some yucky things. I now fear that over his training and deployment that he was exposed to something particularly yucky and his sperm is now FUBAR (F*ed Up Beyond All Recognition, for those not in the cool kid military club). These FUBAR sperm led to Blue Sunday the Spoiled Baby and nothing else in 1 year and 4 months of trying. I mean nothing, not even a chemical pregnancy to show for it, and I would know, because peeing on a stick is my hobby for all but one week a month.

Annnnnnnddddddd today, adding to my "feeling-sorry-for-myself" mood, I
1) Went to ooh and ahh over office BFF's TWO beautiful kids-  one 19 months and the other 2 weeks old WITH OPG (huge bump, totally adorable)
2) Got this auto-reply:

Thank you for your email.  I will be out of the office on maternity leave beginning June 6, 2012.  I plan to return to work at the end of August.  During my absence, please contact..........
One week to the day after MY due date. 
FML

Annd on that, my third F-bomb of this post, I'm out.

Wednesday, July 11, 2012

If Karma Were Currency

If Karma Were Currency I'd Be Rich.  

I previously mentioned that my favorite co-worker just had his second son, well today is his first day back to work. From the interaction I just had, I should have some serious funds built up in my (clearly imaginary) Buddha shaped karma bank.
 

 (This where my karma is kept - and spent from - in case you're wondering)








Let me explain. All I wanted to do was make like an ostrich and hide myself away until he had been back to work long enough that his baby isn't the only thing he and everyone else wants to talk about. Of course, I can't do that. So I sucked it up, went over and asked about the baby. 45 minutes later, complete with slideshow, I'm back here at my desk weepy, emotionally spent and longing for Blue Sunday more than usual.

The past is gone but something might be found
To take its place... Hey jealousy
The Gin Blossoms, Hey Jealousy

What exactly, Gin Blossoms, will take the place of Blue Sunday? What will fill this hole, ease this hurt and make me sweet rather than bitter? Because I can think of Nothing At All.

Friday, July 6, 2012

Let Your Feelings Show - Part 2

Geeking Out:  Food For Thought

I think it is important to spread my story about termination for medical reasons. The numbers who TMFR staggering; though not as high as you might think. The data point that is most often parroted in the poor prenatal diagnosis community is that 92% of women who have a prenatal diagnosis of Down Syndrome terminate.  The study where the 92% termination rate came from was a review study conducted by Mansfield et al. of ten studies on Down syndrome published between 1980 and 1998. Only three of these studies were from the United States and comprised only 77 of the 5035 patients (1.5%). The US is a country where much of the population has access to high quality medical care, money,  quality education and good early interventions we also have a growing population of fervent Christians. Studying this population and their termination rates may show differences from other countries for these or other reasons. Natoli et al published a review of 24 studies, which were of three types- population, hospital and anomaly based.
The weighted mean termination rate was 67% (range: 61%–93%) among seven population-based studies, 85% (range: 60%–90%) among nine hospital-based studies, and 50% (range: 0%–100%) among eight anomaly-based studies. Evidence suggests that termination rates have decreased in recent years. (Natoil)
Still high. Still very high. I think it is also important to remember that this is for DS, which can have relatively few life threatening issues. I think (though I can't say for certain) that had my child had DS and not T18 and was lucky enough to be free of cardiac and other life threats I would have carried to term. That response may be different if actually faced with the situation, faced with a life where we could only be a one income household. I don't think I would ever have another child, and that is a hell of a sacrifice. It is certainly an issue I would struggle with much more than letting Blue Sunday free; that was a no-brainer. The crux of this geeky rant is: If 67-85% (the official estimate from the paper) of mothers of kids with DS terminate, even now, how much higher is it for T18, T13, anceophaly or the host of other 90%+ fatal issues? 
This brings me to my point:

Coming Out of the TMFR Closet

It is important to spread my story about termination for medical reasons.

As I mentioned here, my boss and a few others knew we had bad quad results since I had to take time off for the amnio. I was already 18 weeks along so most people knew I was pregnant. When we got the news that it was T18, I was actually at work. After calling my husband I went into my boss's office and told her that it was bad news and I would need to be out. The implication was obvious that I would be terminating, and I was too stunned to realize that this wasn't always a supported action in light of horrible fetal prognosis. Thankfully, where I'm from and in the industry I work, more people are very pro-choice. Unbelievably, my boss started crying, hugged me (neither are really "her style") and says that this happened to one of her kids as well. This was an amazing moment for a few reasons- TFMR is a small club, to work for another TFMR mom is really unlikely. This was also a great moment because she still referred to her baby as one of her kids. She has 2 (beautiful) living children, with a 4.5 year gap between them. I imagine that's where her lost baby should be.

The other night, we had a company softball game (beers all around). My best friend here at work was expecting a little boy any day now (he's the daddy, and his son was born and is healthy). Conversation naturally went back to his wife's pregnancy and his little son at home. One of the other woman in the office started talking about her kids (also 2 boys- 22 months apart just like my friend). I mentioned that I always wanted 4 kids- 2 close in age break and then 2 more- but that I planned the first 2 by 30. Then the dreaded "How many do you have" question. None living- that didn't work out for us". Eventually I mentioned that the baby had T18 and I only made it to 20 weeks. Then I said something to the effect of- "I couldn't imagine having a child who would have such a hard time". Then she remembered, I could see the memory bubble up in her mind in the expression of her eyes.  I had sent out an all company e-mail saying I was no longer pregnant and the baby had T18- no other information. And she started talking about her special needs son. He has a learning and sensory disorder and goes to a special school. One of the kids there has T18. She said the child's mother is younger than she (she might be 40) and that T18 mother looks 60.  She said it is such a hard road. She sometimes is down about her own son and then sees this poor woman and thinks how good she has it.  But that sometimes she wishes that she knew what her son would go through before he was born.. trails off and says "Not that it matters but I think you did the right thing." It was such a relief to have someone KNOW that I TFMRed and to have that validated- by a special needs mom, no less. Parents of kids with SN sometimes seem to view my choice as an assault on their kids and as judgement on their choice to continue with their pregnancy. I have never spoken to anyone with these views in person, only on-line, so I can't say if this is a common sentiment or not, but I do know that it happens. The crux of the argument is that we chose different and divergent paths, but that we do so for ourselves and our children. 

Hugs to all of you with a child with SN- here on earth or in the great beyond. This is not easy, but I really and truly think we all made the decision we felt was best- and there should be no shame in that.

Shout, shout, let it all out, these are the things I can do without
Come on, I'm talking to you, come on
Shout, shout, let it all out, these are the things I can do without 
Tears For Fears, Shout 

References
Natoli JL, Ackerman DL, McDermott S, Edwards JG. Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995-2011). Prenat Diagn. 2012 Feb;32(2):142-53. doi: 10.1002/pd.2910.