Warning my mom, friends and family who read this blog...this is about my virtual life (lol) and is not directly about S&E today, it may be boring/confusing so feel free to stop reading here.
It's like I just ended a toxic relationship, and it feels great...lol.
I have received comments and emails of support with regard to the ongoing debates over at TPE. Thanks for those.
But I decided things were getting too toxic when one reader wrote: (she is referring to preemie mom blogs here):
"Most of the crop of bloggers kids are <3 with H&E [Holland & Eden] being the exception. Perhaps the future isnt something they want to look at daily. The common posters here all for the most part have older kids and it may not be something that bloggers with younger kids want to confront/see.
Most of the preemie blogs I read, the parents all think "they" are the exception. One day this will all be a memory and their kids wont be impacted. Hard to keep thinking that when helen and others show you those darn bothersome statistics.
I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
Ok, so I didn't even respond to that, I think I physically shook with anger and I knew I would end up writing something really nasty, but thankfully Jennifer (Arianna's mom http://mailin2.blogspot.com/) did a great job responding. It was at this point that the wheels started turning...why do I keep trying to defend myself and attempt to defend the other moms who I have come to know through the blog world, who are most certainly NOT "sticking their heads in the sand" but who refuse to live in the "doom and gloom" world of some of the moms who comment on TPE?
I was getting so angry at the way people talked about preemies 'damaged fetuses that nature meant to abort', and their own special needs kids. It's like because we don't think our lives are terrible, 1.) we are in denial or covering up for some underlying guilt we feel. 2.) We will feel miserable once are kids are older and at that point we'll reach out to Helen and others. If you read there you'll know what I mean. These are ever present in nearly every post...except for the posts about the author's daughter accomplishing something positive, then these miserable ones don't have much, if anything to say.
So after reading the garbage and the claims from Helen that once our preemies got older we would realize how right she was to wish her child was dead, (rough translation here, but she's literally said she wishes he had died and claims that he would chose no life over his current one), I said to myself, "what are you getting out of this blog anyway?" Even Edwin who usually isn't too interested in what I do online unless it's a video or pics of the kids said "why do you go to that stupid blog?" Once in awhile it had some useful info that I stored away for the future just in case, and often I felt passionate enough to try and get these people to understand someone else's perspective, but it is to no avail. I am dismissed as a "new mom" whose children are too young to say they are doing well, and in 10 years I'll be right with "them." So I'm all done arguing with people who clearly have the opposite idea from me of what it means to be a parent. I will never "change" them and they will never come to a place of acceptance, and I finally see that. So thank you for all your support, but there will be no rebuttal from me.
My last comment was pretty funny and actually caused the blog author to disable comments because I was "getting off topic." But it's ok when people post comments like the one I copied above. I wasn't going to go back because if "they" responded it might compel me to defend myself, but I needed to copy and paste these comments. I won't go back again so I never feel it necessary to tell them off again. Here is my final ado for those of you who want a good laugh:
"I've decided participating here is useless. I have a good basis for what to expect in the future, and thanks to the many preemie mom blogs that talk about the REALITIES of their every day lives, I am equipped with much more useful information than I find here. Statistics are one thing, reading about parents going through these experiences in every day life is much more helpful to me.
So you can accuse me of "putting my head in the sand" because I'm yet another "new mom" who doesn't want to hear some of you moms talk about how much your lives suck anymore. It's actually kind of toxic to hear how miserable you are. I guess this means I'm in denial, huh?
And don't hold your breath Helen, I won't be emailing you in 10, 15, 20, or however many years. You'll never win me over to "the dark side.""
Just think, if we all stop reading and commenting what will they say? They live for the conflict of trying to convince "new moms of preemies" that we don't know anything and our blogs are lies about our lives because we call our children miracles. We talk about the good, the bad, and the ugly. People take pictures of vomit for goodness sake. Anyway, the defense of my children and how amazing they are is chronicled almost daily here, so I feel I'm still doing my duty as a mom who believes her children's lives have value (and no I don't place value on my kid's lives so I can feel better...what an idiot).
(I have a feeling they may comment on this blog...because for some reason they actually come over to my blog and read about my "miracles." Remember Helen's eager comment to "help" the new 23 week mom? Anyway, just ignore them, and if you or I find it offensive and I'll delete it when I see it. This is MY space and I don't invite filth here.)
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22 comments:
Sorry to hear about your internet drama. Sometimes I wish people would just use their heads before they feel the "need" to say something hurtful. You want to know why there are so few blogs about older kids that were born prematurely? Because blogs haven't been popular for more than a couple of years! Moms of younger children are likely younger themselves, are they not? Meaning they're more likely to be "up" on the technology involved in the blogging world. I bet there are a lot more bloggers in their mid-20s then their are in their mid-30s out there. And it'll be that way until the current group of bloggers age. Is she implying that once your children turn 3, you'll just stop blogging about their lives?
I'm sorry you've had to deal with so much animosity over at TPE. I commented to my husband that you are a stronger person than I am - I gave up trying to get them to see another POV a loooong time ago. I think I might start commenting again when Noah turns 3 in May, though. They'll have to listen then, right? Only another 6 months until I realize that *gasp* he's not "normal". Good luck moving on! :-)
I'm in most of the groups and blogs and I've been reading this debate as well... I don't get into the gloom and doom scenarios, and i don't think any child is the *exception*. I had twins at 24 weeks and lost one of them... the only thing I ever think when reading the blog of ANY preemie... is Thank God he/she is alive. I know the parents may have very hard times with them depending on their medical issues but I'm just happy to be reading about them!
It probably sounds a little sugar coated but that's just me.
I agree with you Jen about the age of the bloggers. I am in my 30's and rarely blog! lol
i started emailing you yesterday and deleted it
I am not a preemie mom and hate the fact that hh dismisses dissenting voices as new preemie moms or special interest groups - i am neither and she offends me greatly.
I think you have done a great job over the months of presenting the other side, the people who choose to find joy in their circumstances. I find it offensive that this is said to be "making lemonade"
But I also think you've done the right thing in leaving. HH and her cronies are bitter, twisted and poisonous.
Anyone who believes that kids under 24/5/6 weeks should not be resucitated can say what they wanted and is the subject of adoration. Anyone with an opposing experience or opinion is attacked, vilified, has there words, twisted, etc.
Anyway, Kudos to you Stephanie
I am so glad that you have rid yourself from those EXTREMELY miserable women. I stopped commenting long ago on there because I felt that anything positive I had to say would be cut down and turned into a negative. Which is very sad because any "new" mother out there seeking answers could become so confused from these two.
HH seems to only refer to negative stats. I personally feel that she should be spending less time reading all the negative preemie outcomes, and focus more on her son's life.
I have often felt sorry for her son, not because of his disability but because of the hostile environment he lives in. If she wanted "perfect" she should have gone out and purchased a puppy. Not had a child. She blames so much on prematurity but seems to forget that even a full term birth can result in a disability.
Don't ever let these women bring you down or make you feel you need to justify yourself. We are the better not them. We appreciate everything our children have been through, everything they have overcome, every milestone they have reached,every smile they give us, and just simply that they are alive.
Giving birth to a premature baby is very tragic, but not all preemie babies have a tragic result once they come home. There are a lot of positives out there.I was willing to take my kids whatever way the outcome was meant to be. I wanted them no matter what. They are the loves of my life and yes miracles do exist. Whether those two want to believe it or not.
Interesting neither of them have a blog isn't it? Makes me wonder why they hide behind a computer. It's usually the cowards who do that. Hmmm.....
I fumed at what was going on over there (though I hadn't read about it until the head's up on the preemie mom list earlier today; I got to take the whole thing in at once, which was a little much, really).
Anyway, I just want to offer my support to you, and to say that, if in five or ten years Hallie has any issues that crop up, you better bet your a** that Helen Harrison will be the very last person to whom I will turn. Her singular lack of capacity for empathy is bone chilling at the very best. Yes, I am all too aware that none of our kids could possibly walk out of the situation into which they were born unscathed and that there is no denying that their births were not what we wanted for them, but walking around resenting them hardly amounts to decent parenting. To put it extremely mildly.
Anyway, about the age of bloggers---I'm kind of an outlier, but no doubt some of that is due to the fact that I'm still in college (teaching, but still) and never quite grew up!
Thanks for all your support. I feel so much better not feeling compelled to go and defend against the preposterous things that are written there. It literally disrupts my day when I get so angry over their ignorance.
My suggestion (and it's only a suggestion) is that those of us who have been commenting there (which many have stopped a long time ago) simply stop. Helen's mission is to convince everyone she is right and she enjoys the conflict that ensues when she says something offensive or outrageous. If we stop adding fuel to the fire, the flame will wither and die. Stacy, the author of TPE, wanted a blog that talks about the long term affects of prematurity, but the posts she writes are overshadowed by Helen and Terri w/ 2's comments. Statistics are thrown around by HH, and Teri w/ 2 and sometimes some other anonymous person or a person without a blog will talk about how terrible their lives are. How is this helping us? What helps is when I can go to any of your blogs and learn about what your kiddos are going through and a lot of it applies to S&E. We can get ideas from each other and give support to new parents who are just finding themselves in the NICU with a 1 pound baby who wasn't due for another 3-4 months.
Everyone is entitled to their own choices, but I personally would like to see an end to HH's poison and the only way to do that is to ignore her and not engage in futile debates with someone who clearly is too far gone.
If you like TPE of course continue to read her blog, but the comments section is where all h*ll breaks loose. Some may feel how I did and feel passionate enough to continue the debates, (well we were actually asked to think about why we responded by Stacy, the choices were passion, guilt, or fear...b/c if we disagree with Helen it MUST be out of guilt or fear right? I think passion was just thrown in there to attempt balance.) Anyway, I'm still passionate about my kids and my decisions and I have this blog to talk about that. I want to see the end of the "doom and gloomers" and I think the only way to do this would be to stop participating.
And Emily, I'm not stronger than you or anyone else, I guess it just takes time to realize that there is no point in arguing.
"Never argue with a fool, onlookers may not be able to tell the difference." -Mark Twain
Although I think we can see the difference, I'm not arguing with fools anymore.
I just noticed that TPE opened her blog comment section...of course to Helen, this is after she said it would be shut down.
HH always has to have the last word!
Yet another reason to boycott. I refuse to go there and even read what this pathetic woman has to say. Make sure we close after 23wktwins'mommy says something mean about Helen, but make sure we open back up so that Helen gets the last word...whatever. I'm boycotting the entire blog.
It's such crap. All of it. I want so badly for HH to say just one time, "I see your point of view." Why is it so difficult for her to do that???
I have commented over there again, and I want to kick myself right in the a$$ for doing so. I swear if I was more limber I absolutely would!!
I can't say that I will stop reading there, cause I am certainly a glutton for punishment. But hopefully it will take me another 4 months before I post a comment again.
And yes, I find it so very interesting that the comments were closed only for them to reopen in order to allow HH to say more. I actually thought of emailing Stacy and asking her why she closed the comment when states over and over again that she wants her posts to be a place where people can discuss things. Yet the minute someone clearly points out how HH or Terri may want to reconsider something they've said, we are automatically the evil ones.
Ironically, HH's book was the second book that I purchased after Caitlyn was born. And I found it very comforting and it offered fabulous information.
If there is any choice in Caitlyn's prematurity that I could rethink, it would certainly be purchasing that book and giving HH any money towards her "endeavors."
Stephanie,
I think your kids are amazing and that you, your husband, and S&E are truly joyful and not in denial. I never post over there because of the negativity but have read up on the comments.
Have you considered starting a new preemie discussion blog something like: A community of people dedicated to the open discussion of the miracle of premature birth along with the challenges these amzing kids face on a day to day basis?
Like a counter to TPE. I think honest discussion without the poison is important.
Just a thought.
Or rather "the miracle of surviving premature birth" is what I meant =-).
I like this post, and LOVED your comment, it was FABULOUS.
Don't everyone go running off and telling everyone how much you love your children - loving a preemie puts you in a dream world ;)
Jusy wanted to let you know I've joined the boycott! I put my two sense in and now I'm gone too!!
I found you of course from TPE, wow I must say that I think the way you stand up and defend your little ones is great..I too posted a blog on Kellars page about this same thing after reading all of that negative mess..It makes me sick..I feel at times that HH thinks that anyone who chooses to continue care is hurting their child, I love my child NO MATTER what he is/isn't doing...Mind if I add your blog to Kellars site? Feel free to add ours as well if you'd like..
I love you and your post. I have nothing to add because you've said it all. You're fab! Our kids are fab! Helen sucks.
I lurk at TPE because it's loaded with info, but the one thing I always wanted to point out to everyone everywhere is that even the naysayers have it in their mind that 26 weeks is a great cutoff, and then look at my 26-week son who has more issues than EJ at 23 weeks. Anyway, I always thought it was amazing how you continued to comment and 'fight the good fight' so to speak. I personally have no opinion on resusictation because were I to take that one on, then we have to talk about why Down's syndrome children aren't aborted and why kids born with disabilities are allowed to live and, you know what? I saw quite a few term kids die in the NICU, too. My thought process is, and always has been, okay so we did this, get over it, now what? We can't change the past. I didn't get into the debate that night. I'm too tired and too old lol.
Anyway, you're doing a great job with your babies who are beautiful, and I hope it's okay to link S&E to Emery's blog.
Oh Stephanie....you are where I was a few months ago! I was over there commenting away like crazy only to be brought down over and over again. I was told that I was "sick" because I said that I wouldn't change a thing about Ashton. I was "sick" because I liked to see him in pain....suffering. Hmmm when the heck is he in pain and when the heck is he suffering?!? I told them all they had to do was go over to my blog and take one look at him....then tell me that he is in pain and suffering!!
I too used to get frustrated/angry/upset over the comments and my dh would also ask why I even put myself in a place to read all the nonsense. But it was almost addicting. I however did give up.
I used to tell them all that I felt sorry for any of their children that were disabled because they were obviously bitter and lived a pretty shitty life if you asked me. The way that we live affects our children big time, I am a true believer of that. If I was constantly "mad" because Ashton was disabled, do you think he would be the happy loving boy that he is now?!? I highly doubt it. He is the way he is because of the way I am. I love him and NO I wouldn't change a thing about him. He is perfect to me and I am who I am today because of him. (By the way this makes me sick in the head LOL)
Now with all this being said I can say TODAY that if I was to get pregnant again I would set a "limit" for ressusitation. I would not have said this a year ago even, but I have come to the realization that there needs to be something there for me...my own personal opinion.
You are a wonderful mother and have grown since your first email you sent me. (I still have it by the way)....you don't need to prove to anyone, anything!
I visit here sometimes but never comment, but I wanted to applaud you for this decision. I had to stop reading TPE and Neonatal Doc a long time ago. My reasons are different than yours, but in some ways they are the same. I was trying to present the other piece of the preemie puzzle, the piece that represents the parents whose preemies die, and I too never felt as though my voice was heard. I can't tell you how often I would cringe reading a mother with a living child say it would have been better for everyone if her child had been allowed to die. Not because I discount the very real challenges involved with parenting a seriously disabled child, but because I felt they were dismissing the life altering trauma involved in watching your child die. Being the parent of dead children is no picnic either.
I am happy for you, and all of the ways your babies are thriving. I don't visit her often, but every once in awhile I come to get a glimpse of what might have been. Enjoy every minute with those beautiful miracles.
I have followed your blog for a few months now, and I just want to add that your darlings are amazing!You have spoken up for all children on TPE much more eloquently than I have been able to, and for that you deserve a round of applause. I haven't yet decided if I am going to give up posting over there yet or not. I know I am beating my head against a brick wall, but she has such a wide readership that I still feel the urge to throw some reality in amongst the propaganda. My son is nearly 11 years old, and to protect his privacy I do not blog, or provide identifing info ( he is in the 5th grade, and if any of his friends stumbled upon his personal life on line ,well, I don't even want to think about it!!!) But suffice it to say that I have passed the magical "3" and "10" year mark, and am still going strong - I have no plans to start resenting my son's life anytime soon, lol.
You guys are amazing and thank you for all of your comments and support.
I wanted to address a couple of things in these comments.
Shannon, I respect your decision (and other's) to chose comfort care if you delivered at 24 weeks again. It took me a little while to put myself in other people's shoes, to realize that the reasons behind this choice were not something I should judge. Although I still don't have a definitive answer as to what I would do if this happened to me again (I have S&E's interests to be concerned about) I do know saying what I would do at this point and actually following through is totally different for *me*. I was told about the consequences of my decision and I still chose it. I couldn't get past the idea of not trying, of not giving them a chance. But I definitely see why people chose comfort care and I truly believe people are entitled to that choice. Things get a little fuzzy to me after 24 weeks b/c of the babies I know who spent little to no time on the vent. And then there's the whole what about the 25.6 weeker? I don't know, I agree with Sarah, 26 weeks is no magic gestational age. It's a choice no parent should have to make, unfortunately, we know it is can be a choice we are forced to make.
What I disagree with wholeheartedly is how at TPE if you chose to resuscitate your child 1.) you had no idea what you were choosing and the evil NICU experimented on your child or 2.) you sentenced your child to a life of pain and suffering.
I also wanted to address Lori's point. Losing a child must be devastating and it's something I really don't have a right to talk about because both my 23 weekers survived, and even though we came damn close many times, I DON'T know what it feels like to lose a child. I have seen my sister-in-law continue to grieve over the loss of her 22 weeker, and I have read the pain that moms on my blogs still feel, years later, at the loss of their child/ren. For those who were not given a choice to resuscitate at a gestation that other hospitals resuscitate at, it must be devastating if your choice would have been to medically intervene. I am acknowledging the pain that Lori feels when people at TPE say it would have been better for their child to die.
I have also thought about Adam and Andrew's mom idea. Although I primarily still want this blog to document the lives of S&E, I think every once in awhile I may touch upon some of the more controversial aspects of prematurity and have productive conversations that don't involve spewing statistics and degrading preemies and children with special needs. The resuscitation question is always going to be sensitive to many of us, but I see no problem talking about WHY we make the choices we do. It can comfort others who have made the same choices we have and it can open the eyes of others who had not previously considered that point of view. I am also going to be bringing up some topics to discuss; one I have already started thinking about: nasal intubation vs oral. I have some thoughts on it and I'd like other's input.
And yes, I have grown so much since last January when my children came home. I was scared of what the future held and I still needed to get to a place of acceptance. Sometimes I still cry at night when I think about how much healthier they would have been had they made it to term. Sometimes I think about people who shouldn't be mothers who have these healthy children and don't even appreciate it. But most times, I am so thankful for my kids and am so thankful for all they have taught me in such a short time. It's why I talked about unconditional love on TPE. When your child isn't like a "typical child" in development, health, eating, appearance, etc. I think you learn to appreciate the little things you might not have before. Every new thing S&E truly amazes me, not because I didn't expect them to do it, but because I knew there was a chance they couldn't.
And of course, anyone who wants to is more than welcome to add our links, I have added Kellar's, Adam and Andrew's, and Emery's and am looking forward to reading up on them as well.
Sorry that you felt alienated at TPE. I wanted to say that your comment about what it might feel like to choose non-resuscitation for a 26 weeker really made me stop and think. While we made that choice, thankfully we never had to act on it. I agree with Lori that making these decision and acting on them is incredibly tough and I don't mean at all to dismiss the incredible suffering that would go along with such a decision. I do think it can be helpful, maybe even healing, to talk about them, however.
PS. I have continued a discussion about resuscitation at my own blog, Breech Mama, for anyone who is interested.
I think that this is hardly the ONLY topic, nor even the most important one to discuss. But it clearly isn't an easy one.
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