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Wednesday, December 31, 2008

Happy New Year

All I can saw is, WOW, I can't believe all the drama that my last post caused. It caused me 2 sleepless nights as I debated how to answer, but instead I just let it be.

I've got to say:

I now feel if/when I post all the great things that Kaitlyn does (that I don't normally have a lot of time to post about because there ARE so many great things) that I'm doing it because readers have told me to. uggh. I hate that pressure.

I've been dealing with some serious lack of sleep as Quinn is refluxy/colicky. It's been very difficult on me. Guess that's what motherhood is all about, just learning to operate on a totally lack of sleep with a baby who is either really upset or happy/laughing. We have extremes with Quinn. He goes 2 hours straight at night time cycling between crying, eating, burping spitting up, sleeping (for about 3 minutes) for 2 hours straight. He's no closer to sleeping more than 3 hours at a time. During the day he only sleeps for 20 minutes at a time. I've been begging to my docs to get him a different reflux med.

Kaitlyn is amazing. There are so many times EVERY single day that she does the most amazing things. Her eating has been tremendous as of late (was going to do a post solely on this subject) as I'm in awe at the difference in my little girl in the last year especially in the last 2 months. Her speech has just blossomed lately, she's talking all the time and is now saying more sentences. Just yesterday for the first time she started asking: "What's that?" Now that she's figured out I'll answer, she asks "what's that" for everything! it's her "why" question that I'd heard about. We went to costco and she asked "what's that" about a million times and it was joyous!

I tend to use my blog as my own cathartic therapy. I used to journal when I was younger. When I've gone back and re-read my journals, it seemed I always wrote about the bad stuff, not the good stuff. I think that I feel better after getting things off my chest, hence why the negative posts, and don't bother with the good posts (just too many little amazing moments and too busy) Please keep that in mind if my blog has been negative. I need to vent. Doesn't everyone?

It's now New Years Eve hug your children, hug your loved ones and be joyous!

New Years day update:

I forgot to mention a few things, I didn't want to delete the negative comments on my blog as I do believe in freedom of speech and differing opinions. Just as not everyone has to agree with me, by deleting "negative" comments isn't really allowing freedom of speech on all sides. Also, I think it can be helpful to take in negative comments, absorb and process them and see if there is anything that could be true. I'm always up for growing. Hence why I went a few days without responding I was too mad and upset and wanted to calm down a bit.

Thanks everyone for your support and I hope your 2009 is starting out great.

17 comments:

Jennifer said...

Seriously...Liz you are an AMAZING Mom!

All you people that don't like the way she posts, there is this cool concept...it's called "push the X button and STOP READING!!" Clear?

Liz, I read every single blog post thoroughly, and there are PLENTY of positive aspects that you write about! The people who commented on your last post obviously overlook it and only see the bad. Don't listen to them. They can go play in traffic.

Jennifer said...

aww, I'm so sad by what I just read. I've been following your blog a long time and didn't even notice all the comments that were left from your last post. I tend not to comment, I figure you get tons. Just didn't realize they were so negative!

It's as if they think they are watching a TV drama and are writing in and asking for a script change, however, this would be a reality show. There is no script for the REAL WORLD!

This blog is your "home" your place to call your own, to express yourself in whatever way you see fit. There will always be someone who doesn't agree. You have enough keeping you up at night, so please don't let those comments weigh on your mind and heart. You need whatever precious sleep you can get.

You are living this life, you know what it's like, there is no way they can know what every moment is filled with nor should they be allowed. They choose to read this blog, they should relinquish the right to place demands on the contents.

skeybunny said...

Liz,

I had read the "EPS" post but not the comments until just now. I have always admired your honesty. I don't always agree with what you have to say, but I completely support your right to post what or how you feel. It really saddened me to read those incredibly negative comments. I think all of your blog readers probably have something in common with your situation, but not one of us has walked a day in your shoes--and we don't have the right to pass that kind of judgement.

Sarah

Anonymous said...

Liz,

Happy New Year to you too.

People should stop talking about the earlier post.It's gone way to far and Liz heard so much!There are bad and good comments and everybody gets criticism once in a while even the president gets all the time. The people are not against you liz,they just want to hear something good about Kaitlyn and it's good that you posted new thing to stop that but people are still going on!Hope Quinn feels better soon!

Bre.

Cora said...

Hmmm...I had to go back and read your last post to refresh my memory. Because when I read it the first time (and the second), it wasn't negative. It was honest. I'm betting that most of your negative commentors don't have their "own" Kaitlyn (or P, or E) for that matter.

I too tend to use my blog as a journal. Keep it up, you write great stuff, and I enjoy your honesty.

abby said...

Happy New Year, lovely McCarthy family! I can't believe you guys managed to pull off a New Year's post. I'm jealous. I have been meaning to get to this, some time last year. And alas the year is over (even practically where you are....sigh). We love you guys, and we love your blog.

The expanding Eble-Schraders

Anonymous said...

Please don't stop being totally honest. I started reading 2 blogs (after filtering through many) when I went in to pre term labor at 25 weeks, yours and Holland and Eden's. I stuck with them because I felt you both were honest about the ups and the downs. You both have helped me so much with my own struggles. It makes me sad to think you might start censoring yourself. I plead with you not to start writing only the happy parts of parenting a micro and a preemie. There are plenty of other blogs for people to read if they only want the sunny side of parenting.

Stacy said...

Oh Liz - I'm so sorry for all the negative commentors. I doubt that many of them have walked in your shoes or understand the pressure that you've been under. I doubt they realize the stress and trauma that you go through when you have a preemie child - or the guilt that a preemie mom feels when her child is born early...and every single time they experience issues with prematurity.

We're always told that Tanner is "doing great" - and "looks well". And, he is, really, he is. I love the boy to pieces, and I wouldn't change him - but if I could take back some of the stuff that he's been through, I sure would! We recently had to deny all of his special services (OT & Speech) because we would not be able to choose our elementary within our school district if he had services. Sounds like discrimination?

It's hard not to have a label that can be applied. People it get it when you say your child has "Downs" or "Autism" - or many other things, but they don't necessarily "get it" when you say your kid was a preemie.

Hugs to you - keep writing - you are a wonderful source of support for many preemie moms out there!

Amy said...

Liz,

I usually don't comment in controversial situations, but I only just read this today and want to let you know that, as someone who has followed your story since Day 1, I'm sorry you had to be put through the wringer on this.

Sweetheart, you lost a child. Most of us will (mercifully) never know that kind of pain. Then, instead of having time to grieve over the loss of Corrine, you went through YEARS of just trying to get Kaitlyn the help/service she needed. You WERE her tireless advocate and she would never have come as far as she has without such a strong mother. I've told you how much I admire you countless times. I've cheered along side you and cried along side you since you began this blog. Early on, I would get tired just READING your blog with all the specialists/appointments you had to see.

I agree with some of the commenters that your blog has been rather one-sided lately (negative/depressing--whatever label you want to give it), but you know what? It is how you feel. You are owning that. I personally just feel like you have been through HELL the last few years and haven't had the time to sit back and process it all until now. Plus, the post-pregnancy hormones probably don't do you any favors.

You are probably right that Kaitlyn will never be "normal" and that she will be teased. My God, how heartbreaking that is as her mother. I think it's only normal that you feel upset, cheated, etc. It doesn't mean you love her any less. I know that. And I know that you will make sure that she knows that.

Kristin said...

Happy New Year Liz,

Don't ever censor what you have to say. This is your blog/outlet, not theirs and if their choose to find whatever you have to blog about as something they find negative, there's the door, don't let it hit them on the way out.

Being a mom, regardless of prematurity or not, is not an easy job. I'm sure that if I had continued blogging P's life, there would be many posts of the impact of prematurity on her and the impact of puberty on R's life and the combination of the terrible twos and puberty at the same time has a dramatic impact on the colour of my hair.

But on the other side of the coin, I have done little to post the milestones either daughter has come to.. how proud I am of my full-term daughter to be a responsible teenager and not hanging out with psycho friends or getting into trouble or how proud I am of my preemie for having spent 4 hours today making me breakfast, lunch and dinner in her play kitchen .. but all three meals were pancakes and tea. But that she will eat next to nothing would take away from it.

I tried to explain to P's paternal grandmother that she still wasn't caught up and I would expect it to be a while yet.. I got a speech similar to Anne's comment. So, for me, reading your words, Liz, allows me the chance to agree silently and know what I need to do for her without an audience, without judgment and without scrutiny.

Thank you for your honesty, albeit brutal honesty, and don't change a thing!

Lots of hug and love,

K, P & R

The Microblogologist said...

Maybe you need a disclaimer telling people that you use your blog to vent sometimes and that you are totally aware of how amazing your children are, might keep the first time readers from making assumptions about you that just are not true. I have not read the comments in your ESP post and probably won't given I was mad enough reading the horrible comments from the real estate post. Why can't some people grasp the concept that there is often more to the story than just what someone says in a single blog post, or even on an entire blog? Yes people open up their self and their life on blogs like this one but they can't possibly tell everything and in most cases who the hell are they to judge?

You and I definitely disagree on one thing, free speech. I believe in freedom of speech in most places but do not for my blog. Currently I have never actually censored a commenter on my blog (to be silly I even let a few spam comments through) but I reserve the right to by having comment moderation in place. Depending on the comment and subject is if I would allow a negative comment on my blog (I actually have since it was a regular and he had a point). I see my blog as my place, my outlet, if I post something controversial then I am likely to let people who disagree with me through but only if they are respectful of mine and my other readers' beliefs/opinions. Depending on the topic I am more than willing to discuss opposing views as long as it is a civil discussion and not a exercise in how to belittle and demean someone (I've been in way too many of those "conversations/debates").

I don't know, I just think that people are taking some of this way too far and need to take a look in the mirror before attacking you and anyone else in the blogosphere. You should not have to feel the need to censor yourself on YOUR blog! Especially since they seem to be people that either have very poor memories and reading comprehension skills and have not read more than maybe a post or part of a post before spewing their poison in your comments. I think you are a great mother who obviously works her butt off to make sure her kids have everything they need to grow up and be the best they can be, the only way to do that is to acknowledge the areas they need help in. Maybe I'm wrong but as someone who has read this blog from the beginning (as in I read your archives after discovering you) I don't think I am.

Best,
Karen

Shannon and Carey said...

Love ya Liz.
This is your blog and you can say anything you damn well please. I have read your blog for about 2.5 years now. And I'll continue to read it and be your friend and support you from miles away.
-Shannon in Austin

thehobbs said...

Liz~
I stumbled upon your blog a while back through another preemie's blog and spent many hours reading your story...feeling your joy and your pain and being fascinated by all that happens in the micro-preemie world. I am an NICU nurse and I always wonder what life is like for the parents after we patch their kids up enough for them to be able to survive at home and then push them out the door. I was appalled by the negative posts on your last entry. Some may know what you are going through and others may not but none of them have the right to get onto you about how you feel. Let's face it - you drew the short straw. It sucks. And if you need to vent about it and you need to search for answers endlessly and you need somewhere to post what you are feeling then do it. You have every right. Feel sorry for yourself, feel sorry for Kaitlyn, mourn Corinne, wonder what will help Quinn...and tell the world about it. And all the while...don't care what people think. Until they've stepped into your house and lived your life they can have no idea what you go through. You have done much of this journey with Kaitlyn yourself (as far as the feeding intolerance goes) and I admire you for that. But God knows it wasn't easy and there is still a long road ahead of your family. I know there must still be the picture of a perfect family in your head with two healthy term girls and a happy little boy. And, if you want to be upset about not getting that then do it! If you need a place to vent your feelings and this blog is where you choose to do it then those who feel you aren't appreciative enough or think you are bringing your daughter down don't have to read it. I honestly can't believe that people who don't know you any more than what the've read on an internet blog would feel it necessary to leave comments like the ones they left. It's immature. So, I guess what I'm trying to say is....I love reading your blog. I love hearing updates on Kaitlyn and hearing your angst in getting her to where she is. I love seeing one example of what preemie life is like after the hospital days. I love hearing your trials and how you work to overcome them. Please don't change how you do things bc a few people couldn't keep their mouths shut. Your love for your daughter (and son) radiates throughout this blog and anyone should be able to see that. Good luck with everything.

Kerri and Cody said...

I was getting ready to leave a comment in your EPS post.. and I was shocked by the response! I just wanted to say thanks for recognizing that things don't just turn normal at the age of two (like everyone always says and seems to expect) and there are definite issues that us preemie moms deal with and have a need to evaluate because we want to help our kids any way we can!!! My son just turned three.. he got a couple of more weeks (28 weeker) and while he escaped a lot of issues.. I still feel like there are definitely sensory issues that are there because he was a preemie! He's a smart little guy and does a lot of great things above his age level.. but wow does he get "set-off" and turn so mad sometimes if someone just looks at him wrong when he's tired or just doesn't want to be looked at! (yep.. total EPS!)

I came across your blog awhile back while researching some preemie issues and read your story and I think you've helped far more people than you probably realize. (this is the first time I've posted) You find good information because of your concerns and you share it!! (I have to admit my blog isn't very in depth at all.. I just use it to update friends and family with pictures and stuff.. my in-laws actually created it to keep everyone informed when my son was born as I had a pretty difficult recovery as well and was in the hospital for nearly two months following his birth!!) Anyway, so I've admired that you are able to share so much information with others out there. My son didn't have a g-tube.. but we've definitely struggled (and still do) with feedings and weight gain, etc!! (He finally hit 24 lbs. at 3 years)and I've found some of your posts helpful to me with that issue!

As for the whole EPS thing.. I'm with you on that one. We visited Ansel's NICU doctor recently for his usual developmental follow-ups and I asked his doctor and the therapist some about how easily he gets agitated. They told me they tend to see this in preemies.. that for some reason that particular part of the brain that processes those emotions seems to develop slower in preemies and it would just take patience on my part dealing with him. (I was glad to hear that because I feel like when he has those moments that others see him as this cranky brat (as one obnoxious lady in the store called him once and said he needed a good spanking) I just hate that because to me he is the sweetest most loveable cuddly little guy who just has a few issues from being born too early!

Anyway... sorry this is so long with tons of run on sentences I'm sure.. I've never left such a long comment anywhere!! But I just wanted to say thanks to you for the knowledge you've passed on to others who care about it.

kirsten said...

I've also been following your blog since the beginning (I used to live in Marin but moved to NH and have 3 year old twins).
I think your amazing,courageous and I so, so appreciate your candor and honesty. Your blog is here as a sounding board for you- and if people don't like it they can read something else.
Everyone experiences motherhood in such a different way- it's the toughest job. Any mom that has to deal with health issues big or small on top of just the normal everyday parenting stuff is a Hero in my eyes. Thanks for sharing your story with us.

Eriness said...

I think you are a hero and an amazing mom. I have never once thought that you were ungrateful for Kaitlyn, you have always been her biggest advocate. Those comments from the last post are unacceptable. This is YOUR blog, and you never once asked for their advice. I had similar problems with my own blog which no longer exists. So I say f*ck them. Say what you need to say and don't censor yourself for ANYONE. Stay strong and know that there are more of us lurkers out there pulling for you and your family then the negative jackasses!

Anonymous said...

Hi Liz! I am the mother of a former 25 weeker who just started school. I was out on the internet doing research today trying to get some information to better understand how best to help.our daughter. And I was amazed when I came across your post because I also keep feeling like people who have absolutely no experience or knowledge about micro preemies nor have ever been around very many keep looking at our child through the wrong lense, and consequently, keep misunderstanding, and trying to miscategorize or mislabel our child. For me, I personally don't think extreme prematurity syndrome is the right naming for it, as I don't view my daughter's challenges as a syndrome, but instead view them as what that doctor said to you: our micro preemies missed three months in the womb and that development took place outside the womb. What our children are now dealing with is all of the fallout from having been born so prematurely and not having had that three months to finish developing in the womb. For me, I agree that there does need to be some classification for this, otherwise it won't be looked at through the right lense by professionals when evaluating our kids. I don't have the right term for it yet, but I think something like micro preemie health and development challenges spectrum or something else like that might be a more fitting description/classification for our little ones. (I.e. From everything I have seen and read, and other micro preemie moms that I have spoken to, there does appear to be a lot of common themes yet also differences across what all of our micro preemies face both during and after they leave the NICU. Thanks again for the post!!