The Chaos

“in the midst of movement and chaos, keep stillness inside of you.” – Deepak Chopra

I suppose we all suspected me publicly bringing any of my feelings, especially with this controversial of an issue would end up leading to some pretty opinionated, and at times offensive messages. I have yet to have a reason to delete a comment on my blog but the poll I shared Thursday night has spread like crazy where I have many people talking in many different ways. Some supportive, some offended, some just praying. Some are so highly opinionated and only thinking of their personal beliefs, which I understand, but I suppose they misunderstood the purpose of sharing that survey. I tell you all again…it will NOT be a determining factor of our decision. In fact, in a moment I will close that survey and let the results, which are pretty much a dead tie stay as they are with the 200+ participants. For me sharing the poll was important because I’ve received countless messages or people telling me in person “I just wish I could share with you my thoughts but I don’t want to hurt or offend you”. So for me the poll opened this opportunity…the opportunity to listen – which at this point I feel I need to do. It helps me see more than one perspective. Ultimately only Jason and my decisions are the ones that will count but your voice helps me think more deeply of all these tough choices.

I am a member on and have been since I was expecting Hope. It can be a very helpful place to connect with other parents in similar experiences, especially while pregnant. They also have boards for other topics where support is needed such as miscarriages, termination, and even spina bifida. I connected instantly once I learned of the one for spina bifida. I just know hearing personal stories would help me tremendously in seeing what we had to expect. At first it left optimism. Then my heart flip flopped reading back and forth through tons of families who have a child with spina bifida. Most left me feeling more fearful of the significant needs I read about on their blogs. I’ve shared a few thoughts these last couple of weeks and typically they’ve been supportive, until the survey I shared. And I won’t say all are unsupportive, despite the choices I have which many never considered or never had the same options, but most are heartbreaking. I’ve elected to step away from babycenter until we make our decision and even then to be honest, I don’t think I could ever reach out to parents who have expressed themselves in such a way that they care not to listen and find my thoughts offensive or insulting. I will not say this holds true for everyone but it does me no good to speak to a group that I thought would give support when instead they’ve mostly done the opposite. But I could sense it would happen from somewhere. These parents have already made their decisions and I value their passionate beliefs but right now I’m not at that point where I’ve made that decision so it is heartbreaking to hear some thoughts. I have come to learn that all of the discussion boards on baby center end up leaving parents struggling with truly trying and controversial decisions and thoughts only end up leaving other parents up in an uproar and not thinking once about the support these parents need, but rather leaving them to throw out their opinion thoughtlessly only thinking of themselves and not the heartache the person is feeling. And I’ve seen it on many occasions with other parents for more than just what I have shared. Due to that it makes it senseless to call it a “support group” in my opinion and don’t be surprised if I send these thoughts to babycenter directly someday.

The thoughts on that discussion thread are still public, not sure if they will remain that way but you are welcome to read the things I’ve read which leave me not wanting to read more. I thought I read enough yesterday and to wake up this morning to read more hurtful messages really truly leaves me unsettled but it is what it is. I let the moderator of the board know that if she wishes she may close the board or not. The remainder of the thoughts are irrelevant to me but if they care to continue to vent and need that space to do so then so be it. I wrote the moderator my thoughts this morning and felt it would be very beneficial to share after hearing soooooooooooooooooo many of your thoughts the last day or so. Perhaps this will help you understand things a bit better. I will close comments on this thread because I’m not seeking further input at all. Those that really truly care about me know how to get in touch with me. And the rest truly don’t matter. Thank you all again for your thoughts…every single person I know and who cares for me has told me to trust my heart and to listen and though each person has had their own opinions they assured me that those closest to me that I truly care for will never judge us no matter what we decide. Here’s my message to the moderator:

First let me thank you for offering to close the board and to even speak up to notice it is getting way out of line. You may not think so but I’ve read some offensive, discouraging and even one person straight saying “I feel like I hate you, and then I hate you even more for making me feel this yucky.” And then people to tell me “you need help”…go to counseling. I am very open and honest and very confident my heart is strong willed and I suppose if I “need help” now it’s due to the bitter messages I’ve read in the last day who refuse to even listen to any other point of view than their own. Someone who cares for me and my family dearly read the thoughts by many of the parents and heard my heartfelt message of concern I sent yesterday and said this in regards to everyone’s opinions: “seems there are several people out there who think their opinions and feelings are more important that yours when it comes to this hard decision of yours and honestly i don’t really think they have your and your family’s best interest in mind…. and the reason why they don’t like your poll is because they don’t like people who have contrary opinions other than theirs.”

Honestly, I’ll leave it up to you but the more I read the messages the more absolutely disgusted and heartbroken I am to read or even be a part of this group. To me the mom’s have beat the horse to death. In fact, I sit here and have an extreme amount of hope for this child and I have said it many times…I thank you all for reaching out and trying to help and for sharing your stories – through you guys I get to see what other children and families are going through. You guys give me hope. But it does NOT take the fear, the hurt, the uncertainty away. And though you all have helped give me strength in the last 2 1/2 weeks reading your stories – you are not me, you have no idea what my life entails. You all may have similarities – but my life, my values, my beliefs – they are not necessarily the same as anyone that has spoken publicly on that board. What you don’t see is that that bit of hope you all have given me…has quickly faded from the bitterness. To know there are mom’s out there that aren’t even receptive to listening to the choices any family should have and instantly get offended and not realize a parent such as myself needs the support…not the bashing…that is what is truly sad. I felt more hurt by the women who said …don’t bother talking about termination at all on this board. However, for expecting mothers – this is something that should not be scared to speak of. Yes, there’s a termination board and yes I have been there. But you tell me which should give me more optimism…the one where people are living lives with SB or the ones who terminated. And I hate to say it…though I appreciating learning of everyone’s experiences – it is the SB board that has sucked the life right out of me, not the termination board. I didn’t come asking you guys to tell me to terminate…but in hopes to accept that I do have these choices and understand that it makes my decision harder. And to me if you deny any parent expecting a child with SB these feelings and decisions is wrong. Don’t bash them because they’re thoughts and beliefs are different. I never once said “hey i’m looking for validation to terminate”…as some have accused. It’s just sad that that’ is the perception many have and it just proves how much of one track mind most on the board have. It’s not supportive…it basically says to me that unless a mom hides these feelings and fears and proclaims she’s prolife that it’s worthless to speak up at all when she shares her concerns and worries about SB.

I did not share the poll with you guys to say “please tell me you guys would have terminated”. You all really truly have bashed me down to a level proving your misunderstanding of me, my situation, or my purpose for sharing. Again, I felt you all held hope for what I have not let go of…and that is this child but I am still uncertain if it is fair to my child or my family or our future. And I’m sorry if those thoughts have hurt or offended you all…but I didnt’ ever once ask you all to send such insulting messages. It’s left me quite hurt…but I am stronger than the words sent that have hurt me and I will not allow them to hold me down or belittle me further. It has only confirmed what I have felt about baby center since sharing Now I lay me down to sleep information with parents after a mother experienced a 2nd trimester loss and also as I just read on the more touchy topics like circumcision, finding out the sex of the baby, or abortion – and that is that mothers seem to only stand to their own convictions and only a small  number are receptive to listening and being able to help a mother as she battles these sorts of decisions. I didn’t expect anyone to vote for termination, especially not in this board, but they have – and I think that speaks volumes of how heated of a topic this is. And I’m sorry I’ve brought it to light to those of you who have been where I am. I hear you all say publicly on the board “I would never go back and change my mind” – yet, what you do NOT see are the private messages of the women who are scared to speak up, they are silent, and whether they have terminated or they have had their child and now live with regrets…I have received just as many of those messages through baby center’s messages or email. Yes, there are mothers caring for children who wished they had terminated…they’ve told me. This does not make my decision – it allows me to listen and just again think about this more and harder and to make sure I give it full thought because this will impact me, my baby, my family and so many surrounding me. To just jump to any decision with out serious thought only shows my selfishness and thoughtlessness of all those I care for. So forgive me for being open, honest, and caring to receive opinions. The poll was NOT intended to make my decision…I said that and apparently some did not read or have some other perception. I have always felt it useful to use surveys to just listen…not to make my decision. Again, as I shared with the board – go look back at my “logo” survey for my business I shared…that one logo everyone picked not a darn person knew this but that was the one I was completely against but my designer was so amazing and I wanted to share all her work and just listen to what everyone thought. And perhaps it’s me the designer and educator who feels opinions are vital to growth and life in general – if we just sit and do what we’ve always done or sit and do things without serious thought – we never improve or live life to the fullest. Or as the quote by MLK shared in that blog post states, “Our lives begin to end the day we become silent about things that matter.”

And I’d like you take a moment to go visit the march 2011 babycenter board – I imagine my comment will show up in my profile somehow. There is a woman who shared that she “hated” her baby – she was reaching out in fear and uncertainty after telling everyone about the baby she never wanted and having the father be a deadbeat she felt hopeless. I did not participate in that discussion and didn’t even read it but I did read the one of a member on the board who wrote how disgusted by the conversation on the board. Now you think about those cold, dark moments when people are faced with adversity and tough decisions that will forever alter their lives. When they are reaching out for support – and you go ahead and tell me how wise it is to not at least listen and give an objective opinion. I expected to hear virtually everyone on the SB board to say “I’ll never go back I love my kid.” – but if you can’t at least listen to the pain and fear I must face with this decision and what is ahead with whatever I decide and do so and only offer support in a way that will help offer support, not for termination but at least acknowledging that the feelings and thoughts are real and not wrong to have…that is where I have to tell you it is sooooooo wrong to read a lot of what I’ve read on the board. Go back to that pregnancy board and the woman who stood up to speak out did an amazing job – and shared a connection to some other “support” board she learned about and how this type of misunderstanding and bashing caused someone to commit suicide. It’s so wrong on many levels. I understand we all have our own beliefs but the purpose of the board is to offer support, not to bash and belittle one for having differing opinions or for doing as I have done to receive opinions. And again, I’ve had a ton…and I mean a ton of a people say “I wish I could tell you what to do but I don’t want to hurt or offend you”. So to me, this was their opportunity to speak up anonymously…I felt I owed it to the ones I care about and I DO want to hear what they think. It will not make my decision for me…but it opens my heart to just think MORE.

And I worry not about me…I know this will be hard no matter what we decide. We have not decided still. And will not for a week or two. I fear more those people who “lurk” or those people who are scared to speak up or speak out. They read. I guarantee for ever person that commented there were 10 or more for each person that read the posts on the board. In fact, I’ve had one or two email me to say “thank you I was feeling that same way” since posting that. They are the ones I’m worried about. They are sitting reading and looking for hope silently and they are likely sitting alone hurting and crying feeling the same pain I have – yet, they probably feel more helpless I feel…because they are frightened to share their voice because as you can see – it causes a great deal of retaliation when you bring something like this to light. Have some of the things said hurt to read. Yes. Have some made me cry. Yes. Will it define my decision. No. It only makes me listen more and really it’s a battle for me to work out in my own heart that to be honest just only helps me see so many more aspects to this decision that I never thought about. If you want to leave it open…so be it. It will not hurt me further. I am not objected to being the voice and perhaps a better word is, scapegoat, for all those women who are scared to speak up or who remain silent. I guarantee there are just as many who feel and think as I do …likely as many or more than the number of SB parents on the board.

My intent was not to bash the SB families or children. I admire you all so much for being able to make that sacrifice and perhaps I can find it in my heart to do the same. And you’ve helped me see so much more than those books, pamphlets, and chats with the doctors have helped me understand. You’re experiences have helped me see the personal side of SB – touching, yet still so heartbreaking regardless of how much joy you claim it brings. It just reminds me over and over how unfair this situation is, even more so after all I’ve been through.

I was appalled to hear someone ask if I’d take my other two children’s lives…and they have no issues at all. These connections you all make are so wrong. I share with you a few thoughts from a mother who emailed me in regards to our children or if anything else medically happened to them.

“And as far as their arguments that anything could happen at any time to any of our other children…..yes, that is true.  But if, IF, prior to your child getting cancer, or getting hit by a car, or whatever, you could see the probable outcomes and you COULD choose…..what would you choose?  A chance? A life of suffering?  Death?  You can apply this same question to yourself too.  What woud you choose?”

I think of my father-in-law who suffered a heart attack less than 2 years ago and our family decided to take him off of life support after only a couple days. Something I know many are against….but what’s to say a miracle couldn’t have occurred. But we had suffered enough and couldn’t put our family through the hardship…we took his life and we live forever with the memories and the guilt but know it was for the best for everyone, including him.

As far as me choosing to “accept what god sends” or appreciate “gods plan” – I’m over those words after dealing with 3 miscarriages and now this. I believe and try not to doubt what he plans but this “plan” for me makes no sense at all. It hurts and sucks really bad. If I just accept what position God puts me in and don’t listen…or act after thinking through the decisions I am able to make…then I am just sitting here waiting for him to act. And that’s non-sense to think we are just accept he will deliver without any action or thought on our part…lets just deal with what happens I suppose is the thought. If that’s the case we’d all sit on our behinds our entire lives, never work, pray to win the lottery, pray for a family, pray for some great things to happen and hope no bad comes our way. If that were the case the act of conceiving wouldn’t ever be an issue – because God would just deliver babies to who he felt deserved them. I know in my heart he wants me to listen…and to act. And I’m not sure yet about that “act” part – but I’m listening and have a huge heart to listen to all 3 choices I have. If he didn’t want me to do this he wouldn’t have allowed me to find out this early and give me these choices.

So I leave it up to you if you care to close the board, I honestly do not care…the opinions are irrelevant at this point and all I’ve been reading is how much I’ve offended people. I get it…I get that you all faced this decision and you are passionate about life and and that you have experienced the hope. Lucky lucky lucky families…because not all people get this experience. Your children offer so much hope – but it doesn’t eliminate my fear nor have I felt that seeing your stories will steer me towards my decision. It just helps me see the hope and the fear I still have. So again, I don’t care…you decide and if you care to share this message with the rest of the mom’s however, go for it. I will NOT post it or anything else publicly on the board. It is senseless to fuel the fire or upset anyone further. If people care and want to listen then they are following my blog. But I will remain disconnected because the comments have been pretty hurtful and to be honest, useless…they only confirm that some of you would never even think about these options I have…and that alone tells me how different we are just because of our beliefs. I did not say I am terminating or looking for a justification to – but I have not heard enough for me to rule it out. So again, share this if you care to but I will not post publicly before my decision is made, and to be honest, even then, regardless of my decision…it’s pointless for me to stay on the board at all. I can find better support here in Orlando based on my decision. I thought reaching out would help…but it has only done the opposite. In fact, I’ve disconnected from every single SB person/family I began to connect with until I get through my own emotional struggle of making this decision. It’s not worth my time to be judged by people who don’t know me and only have a one sided opinion as I seek support. I fear being judged no matter what I choose – but not by my family, friends, or anyone else around me that cares about me…but but those like you all who do not know me at all. I hear the echo time and time again, that I am sinful for even thinking these thoughts – and I’m sorry…I’m not. I’m not ashamed. I’m stronger than any of you know. Am I hurting since learning all this news. Absolutely. But I am one to become so much stronger through adversity…again you all don’t know me…go back and look at what I’ve been through the last 11 years. I have every right to sit and listen to God…he will lead me to the decision that needs to be made.

I can’t promise I’ll be on babycenter at all for a long time so if you care to respond email me. There’s a link on my blog to do this if you don’t already have my email. I’d appreciate you not sending the mom’s to send me all these thoughts like posted on the boards. And I’d appreciate you caution them for how and what they say not just on the board but on their own blogs…I’ve read many…and if they’re not saying their thoughts on the board – they’re speaking out of their disgust of me just having these thoughts or doing this poll and if you can’t understand my reasons…then I’m sorry. But it makes sense to me and those closest to me. I care about their voice…it will not drive my decision. It only confirms how badly this decision and this situation sucks.

Thank you for your time. I’m again sorry if I offended anyone.

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