The Hardest Thing

I thought of this title a week ago when I contemplated getting the CVS results. I never came up with an alternate one and I suppose under the circumstances it is just as well.

The genetics counselor called this afternoon, a day early. It could have been good. It was not.

It, the baby, fetus, fetbryo, whatever you want to call it, has an unbalanced translocation of chromosomes one and four. It has one and a half copies of four, and two and a half copies of one. This is a lethal rearrangement. The odds of demise occurring before birth are 99.9%. If that 0.1 chance should happen the odds of demise occurring within minutes of birth are another 99.9%.

To me it seems obvious that the most humane thing for me, for Steve, for the child that cannot survive, is to terminate the pregnancy as soon as possible. End it. Have an abortion. A "therapeutic termination" as we like to call them in genetically challenged circles. Which is not to say I do not understand someone in this situation choosing to continue with a doomed pregnancy, I do. Personally, I would find it agonizing but I can see how one could do it.

I have wondered for years if I would ever wind up at this place again, and if I did if I would lie to you. Would I say "there is no longer a heartbeat, I am scheduling a D&C" or would I explain what we are going to do and why? Now that I am here it is no longer a question. Of course I will share this with you. It is painful for me but it is the truth. I have a voice and I have an audience and you can do what you like with my story. Have it hurt you, have it help you, have it anger you... it is not for me to decide.

I don't want to be a pro-choice poster girl. I just want to be a mother- Patrick's mother, somebody else's mother. I would be so thrilled to have another child. I feel profoundly sad right now. I am incredibly disappointed. But before I can lie down and howl like I want to, like I need to, I have to deal. My OB's office is going to make some calls for me tomorrow to see what they can do. I doubt that they can do much. I will let you know what my options are, what they say, how I feel. It helps me to talk about things, I guess.

I am so deeply grateful for the support you give me. Thank you for listening.   

Comments

[Jenna]

Julia-

I have never posted before---long time lurker and mother to a 3 year old Patrick. My heart aches for you. I was so hoping for good news. The only thing I can say to you is that in this whole thing I wish you peace of heart and mind. If it helps at all, I had given up hope as in infertile after Patrick and the doctors prognosis, and 8 weeks ago I gave birth to Connor. I wish desperately for you to be saying something similar soon. Much hugs and good thoughts your way.

Jenna

[Rose]

Oh julia! I'm so incredibly sorry. I've been watching your blog anxiously. Words don't seem adequate so I'll just say I'm so sorry... and my thoughts are with you...

[Janis]

O man Julia, I am so sorry!!! I think I would probably make the same decision in your circumstance. I know that don't help how you feel right now, but I want you to know I am on your side.
Janis

[Mel]

Julia, I am sitting at work so profoundly sorry for the way things have gone. Thank you for sharing your life with us. You're an inspiration to me. I hope you can feel all of these hugs coming your way in FLOODS.

[Linda B]

I'm so incredibly sad for you.

I'm so sorry.

[lindsay]

As a parent, put in your situation, I would make the same choice, I think. The grief would be no less whenever and however this pregnancy would terminate. Peace to you and your family, and grace to the fetbryo.

[Lisa C.]

Julia, you're doing the right thing. No question, don't even doubt it.

I am so very sorry.

[Stacy]

I am delurking to tell you that I thinking of you. I am 6 months pregnant with a singleton after selectively reducing a twin with a genetic anomaly. It was the hardest thing I have ever done. My heart goes out to you.

[Elle]

Oh my god. Oh, oh, oh no.

So very, very sorry to hear this news. Of course you feel profoundly sad-- it is profoundly sad.

Thank you, though, for deciding to share this, even if you might be perceived as trying to be the pro-choice poster child-- which you are clearly not trying to do. It's presenting the reality of really harsh choices, choices that barely feel like choices at all-- choices that are BARELY choices, when either way you go you end up at the same place.

I hope for a quick resolution for you, and healing and tears, and wine and brownies, and arms to hold you.

[daysgoby]

Julia -

I wish I could squeeze your hand and rub your shoulder.

I wish I could take away some of this.

[Emily]

So, so, so unfair. My thoughts are with you and your family. Take care of yourself.

[Rachel Y]

My heart just broke for you and your family. I can't imagine what you must feel, but I just wanted to add my voice to all those who were holding our breath to hear good news, and now will cry a little right along with you.

[Shelley]

I am so sorry, Julia. This is unspeakably hard and unfair and awful. So, so sorry.

[Jessica]

I'm so incredibly sorry, Julia. I'm going in for my anatomical ultrasound monday (and am dreading it) so my heart was especially with you waiting for the results of your CVS. I was so hoping for better news for you.

There is no doubt that, in your circumstances, I would make the exact same decision. No doubt whatsoever. Lots of good thoughts - not that it really helps any at the moment, but they're coming your way.

[Bianca]

Hi Julia.

I still read you like clockwork and cheer for you at every turn. I was SO hoping this was it. I am so very sorry. I know there is nothing I can say except that. I wish you peace. You are an amazing person- funny, clever, thoughtful, proud, happy, hardworking, loving, genuine, kind. I hope you can use your reserves and make it through this sad and awful time. I'm so sad for you, Julia.

Bianca

[Q]

I am so incredibly, deeply sad that you are going through this. Words cannot convey.

[AmyinMotown]

Julia, I am so sorry. You don't deserve this extralarge helping of heartbreak and I am so sorry this happened. I really really hoped this Little Fetbryo That Could was the one.

[Christine]

There just are no words. I'm so, so sorry you're here again. My heart is breaking for you.

[Denise]

I'm so sorry. I was hoping you would get to be a mother again, too. It shouldn't be so hard. It's courageous of you to share your story. Thank you.

[Jenn]

I'm just so sorry. The inadequacy of saying that hurts.

[Meganann]

so so very sorry. One heart can only take so much pain, do what you need to do to save your sanity at this point. I know I would make the same choice.

Thank you for sharing with us, and I so wish it could be different for you in this moment.

[Terry]

I can barely type this because I am bawling as I sit here.

I am so, so, so sorry. I have no other words. Hopefully, everyone's love & support will be some kind of comfort for you.

I hope you don't mind my telling you how amazing I think you are, to share this with all of us. Please take care, sweetie.

[trina-p]

Long time lurker, delurking to say I'm so sorry.

I wish life was like a movie because after everything you've been through this time would have been your happy ending.
Movies have to have some tradgedy but they turn out good in the end.

I'm sorry that this one wasn't it.

[Jenn]

Oh God, Julia, I am so, so sorry. :( I am a long-time lurker who has been rooting for you and this pregnancy ever since it began. For what it's worth coming from a complete stranger, I think you're making exactly the right choice here.

Peace to you, Steve, and little Patrick in this very difficult time.

[Sarah]

My heart sank when I read the news... I wish all us commenters could pool our healing wishes for you and Steve and lift your family out of this; if only there was some way to fix the situation.

Thank you for sharing such a personal decision with us. The right decision is the one that you feel is right for you. No one else has any ground to stand on. I just can't understand a person who would get up on their high and mighty about such an obviously terrible and difficult decision. No one deserves this, least of all you.

[Cinders]

I am so sorry. I never comment, but I read you faithfully, and my heart is so broken for you. I feel like you are my friend, and like all your friends I want to make everything better. I am devastated that I can't.

[Noelle]

Oh gosh. I'm so incredibly sorry. There are no words, but please know you have my support. I'm sending you love through the internet. Patrick is lucky to have a mother like you and someday, someone else will be just as lucky. But for now, I'm so sorry.

[Joanne]

I'll never understand how life can be so cruel. I am so very sorry.

[Jessie]

I am so, so very sorry.

[Ann]

Oh, Julia. De-lurking to say how sorry I am that you have to make this decision. I wish one of us had a magic wand for you, and could wave it and make everything better.

I wish you comfort and peace over the next weeks.

[Ms Sisyphus]

Julia, my inclination is to say that there just aren't words, but that's not true. Somehow, in the midst of the incredible unfairness of the universe, you manage to find the words. And the strength to make your story a vibrant tale of a life, not a tragedy. I am awed and honoured to be part of your truth. I share carry it inside my own heart. Not to make your burden less--nothing could do that--but because you matter so very, very dearly.

[Caitlin]

Oh damn, damn, damn. I am so sorry you have to live through this. I can't think of anything helpful to say, but know that another readers is reaching across the miles to send strength and healing to you and your family.

[january]

Delurking to say I am so, so sorry for this turn of events. What a terrible fate. You and your family will be in my thoughts.

[Amy]

Julia, I'm so very sorry. I echo the kind comments above and I too wish I could be there to comfort you in person. Peace to your family.

[Yatima]

Oh no, oh no, oh no.

[Leta]

Sincerely hoping all the haters stay the hell away from your site and let you deal with this in your own way. Thank you so much for always honestly sharing your story. So very sorry for your pain and loss.

[Mary Scarlet]

Julia, I'm really sorry to read your news. Very sad for you and your family.

[Elizabeth]

I'm so so sorry. I really thought it would work out this time.

It doesn't matter what anyone else would do in your situation. If this decision feels right for you, than it's right.

We'll miss you, little fetbryo.

[Gretchen]

I, too, am a de-lurker. I am sorry to hear about your news. We were pregnant with a baby girl who we found out at 12 weeks was not developing a lymphatic system. prognosis was similar to yours 99% demise prior to birth. We opted for a D & C and terminated the pregnancy. Our next pregnancy resulted in our 3 year old son, Sean. My thoughts are with you.

[Kristen]

I'm sorry, Julia. Thank you for your honesty and bravery, which already has and will continue to help others in your situation.

[Brooke]

I am so sorry to hear this news. I was hoping for the best and thinking you might be getting a break this time. I am so sorry, again. Please take care of yourself.

[Kris]

My heart is broken for you. I'm so sorry.

[Angie]

Oh my God. I am so sorry that you have to go through this. So sorry.

[Kay]

I just sent you an email saying this, but I'll say it again here -- I'm so so sad and sorry that this pregnancy didn't work out for you. It's just so unfair.

Wishing you much peace.

[Susan]

My heart goes out to you. Thank you for sharing this news, as hard as it must be for you.

[grumpygirl]

so, so sorry.

if it means anything, i think you are amazingly brave and tenacious. there are some things in my personal life that i keep trying (and trying and trying) at and the results are never good. i always feel like a stupid failure, but my best friend always says i'm brave and strong and always keep trying.

i didn't believe her till reading your post.

it's beyond awful, but at least you can have a margarita...,

[Elaine]

So terribly sorry, I truly am for you and your family.

[Becca]

I'm so sorry, Julia.

[Kara]

I am so sorry.

[Rose]

Damn it.

I am so sorry.