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Monday, June 22, 2009

Response to Comments from Happy and Sad Post

Felt this should have it's own post.

This is in reply to a commenter from my previous post:

WTF....

Sorry but I had to reply. My gosh!!!

I could just delete, but if you've been reading my blog for any length of time, I don't delete others opinions, but I had to reply....

Jean's Quote: " as a regular reader, I have to finally say that I wish you'd please, please, stop classifying your children as "super-duper delayed" and focusing on the loss of Corrine. Kids develop at varying rates - some are faster than others and some are slower than others. And not every child who doesn't sit up when you want him to needs some sort of intervention. "

My response: Quinn is STIFF, very STIFF. So Stiff that I can't get him into his car seat, bend his legs to put his leg into his pj's and I can't put him in sitting position at times. He also wants to arch backwardes out of my arms. This isn't my "wanting" him to sit! His is now totally able to sit on his own (and prefers to at all times) he can't get to sitting position, He can't roll, nor do much else.

Our Pediatrician did notice at his 9 month review that he's delayed (3 months delayed, reminder he is only 6 weeks early). She offered the ability to visit a PT one time. I declined, feeling (hoping) that things would get better. They haven't, they have gotten worse and I know that our Pediatrican will agree when we see her for our 12 month check up next month.

Quinn hyperextends his legs and arms and it's preventing him from developing as he should. At this point PT and EI CAN help him to get back on track. I KNOW this. It's not when I "want" him to sit up. How can you "offer" opinions when you don't really know what he's doing? I haven't posted much about it, as I've been hoping that he would stop doing the stiff legs and arms and hoping it was from reflux. But it's getting worse not better.

You think I don't know that kids develop at different times? If he was just developing slower than I'd agree. But Quinn is doing things that are very noticeable.

Jean's Quote:

"Many kids aren't good drinkers of breast milk or formula. Life with an infant can be difficult - most infants are not fun most or all of the time, they are a TON of work! "

my response - do all infants have blood in their stool and scream bloody murder? No. Because of my persistence we discovered that Quinn had a milk protein intolerance (from my drinking dairy). After we got him on an elemental formula and reflux meds he went from hardly drinking 3 ounces at a time and screaming all the time, to drinking 8 ounces.

Ok, and what's normal? Probably not your neighbor coming over to ask if everything is ok when they've heard Quinn screaming for hours on end.

Jean's quote: "But constantly complaining, worrying and researching which dreaded disorders your children might have takes away the precious time you have with them - time that is particularly precious if you're a mom with lots of outside activities and a demanding career."

my response - constantly researching dreaded disorders???? WHAT?? Not sure where you fabricated this from...Don't even know what to stay about one... Is this in regards to Quinn? Fabricating bloody stool? Signs of reflux?

Or Kaitlyn? I believe that is my research to find solutions is why Kaitlyn is doing so well today. She is going to graduate out of special education at her 4th birthday. I'm soooo happy. She still has issues, but she is doing GREAT. Really Great!

Jean's quote:
" I know Kaitlyn has difficulties that need to be addressed, but for goodness sake - let Quinn grow for awhile without trying to classify him as a candidate for (in your words, not mine) "the short bus.""

My response - Quinn WAS a preemie. He IS delayed. He is hyperextending his legs, arms and trunk, he wants to stand on tip toes when put on his feet. He goes stiff at any opportunity. This can be from reflux from pain. I don't know. He had a GI follow-up today and The GI couldn't believe how stiff he gets. She said that he indeed should be evaluated.

I'm SAD and BUMMED that this is happening. I'm not making this up. I wanted a regular experience this time around, and Quinn isn't easy. I've EVER expected babies to be easy. (I'm sure you've got something to say about my comment here).

I KNOW that he'll be fine. But I also know that EI will help him. and I NEVER said that he needs special education (or my one time of saying the short bus...which you took totally out of context."

Jean's quote: "Finally, I truly believe you should see a counselor for your paralyzing grief. I know you will always grieve Corrine's loss - it was and is a terrible thing. Despite that fact, you need to move forward. You need to let Kaitlyn be Kaitlyn and not attribute her perfectly normal habit of talking to herself (i.e. entertaining herself) to missing her sister. Kids talk to themselves - frequently while lying in bed waiting to fall asleep. While sad, it is true that Corrine and Kaitlyn shared a womb and that Corrine died so Kaitlyn will never know her. But the reality is that Kaitlyn didn't know her and can only be hampered by you not letting go of them as a two-some. Any grief she feels now and in the future over that loss will be because of your desire to instill grief in her psyche, not a cosmic attachment from the womb."

my comment:

"shesh! paralyzing grief! Did you not read that I stood outside my daughter's door for almost 10 minutes smiling from ear to ear at how amazing my daughter is?

The grief that came on was from a realization that I wish my TWO daughters were talking to one another. Is this paralyzing? hell no! I miss my daughter. I miss her not being here. I don't know if you have lost a child or not. BUT I know that I will hold the empty space in my heart for my ENTIRE life.

I don't recall writing as Jean said: the reason she was talking was due "to missing her sister" . I felt it was so great that she is having imagination play (she's only been doing this for a few months now) and I loved it. Yes, after quite a long time, I got hit by a wave of sadness (which I honestly said here) and I got sad that she wasn't in the room "playing" with her sister, should her sister be alive today.

And yes, maybe you find it creepy, but I do believe that Kaitlyn's sister Corinne watches over her. And I'm sorry if you feel that I have paralyzing guilt" that I thought of Kaitlyn "talking" to her angel sister.

I recently met a grandmother in her 80's that told me she lost a child. She carries that "grief" still, but she's living her life. It's not paralyzing me. It's healthy the way I look at it, I think it's more worrisome for those that ignore it. That grief IS there somewhere inside. How can it not be? It's what you do with that grief and whether you let it run your life (I certainly do not).

For those that know me, they would NEVER call me paralyzed with Grief. I'm a very happy person. I love helping others with their situation (just today a mom called me with a difficult decision to make about carrying twins or not).

Jean's quote: "I have always found it a bit disturbing that you take Kaitlyn to twins events. It sometimes seems like a pathetic plea for attention - "look at me, I'm the mom with one surviving twin, feel bad for me because my daughter died at birth." I think it is creepy that you would force your young child to be a singleton at twin events and absorb the idea that she will never be a whole person in your eyes - she will always be the live one-half of a pair for which you endlessly grieve.

My response. Now in this case I think you have a point. I realize that. When I first attended a twin moms event not long after Kaitlyn came home from the NICU, the Club President told me, "Liz, we'd still welcome your membership, you are a mom of twins and will always be a mom to twins." That's stuck with me.

There are a few reasons I still belong to my local twins club and I'll tell you: 1) The moms that I met when my water first broke hold a special place in my heart. They were there to support my in my darkest times and I will forever cherish their friendship and support (to me a stranger at the time) . I attend functions to see them and they always want to know how Kaitlyn is doing. They really care. Now I mainly attend the mom's functions. These are my friends!

2). I had a hard time bonding with moms in regular moms groups. Their experience of motherhood was nothing like what I was going through with Kaitlyn. It's harder to be a mom of twins than it is of a singleton. They "got" a bit more of how hard my life was so I didn't have to hear women complain about how their child "spit up" or applying for preschools (when I just wanted my daughter to eat)" That may sound heartless, but it's the truth.

3) I haven't taken Kaitlyn to any twin events now for close to a year as now she is getting older and I don't want it to be uncomfortable for her. (this is where I think Jean made a good point), I don't want to be there for a pity party for me, especially for the moms who have never met me before. It was nice to go when I knew so many members and know their children, I have more friends in the local twins group than I do in other mom's club. It felt like "home" to me.

4) I continue to belong to the club as I get asked all the time to help mothers who have lost twins or are having serious twin pregnancy complications.

jean said: "I started to read your blog because it provided some information I needed when dealing with a similar situation. But now, I look because it is like a car wreck - I can't seem to turn away."

My response: Train wreck? hmm, don't know how to comment on that one!

Jean's quote: " Please, please, get some help for yourself before you damage your children. And yes, fellow blog readers, I know I am a terrible person for saying these truthful things, but I am concerned for those two beautiful and perfect children - Kaitlyn and Quin. Sometimes, the truth hurts, but that pain might trigger a change for the better. Probably not, though. And to make everyone happy, I will now avert my gaze."

My response: "damage my children" How in the world am I damaging my children? The truth hurts?

I'm all for the truth. I will tell Kaitlyn about her sister. I am very aware that she could suffer from survivors guilt. I will do EVERYTHING in my power to prevent that from happening. I know that Quinn wouldn't be here with me today if I hadn't lost Corinne. We only wanted to have 2 children. I'm forever blessed to have my son Quinn.

Those who really KNOW me know that I have found the positive in Corinne's passing. I tell folks this when they ask me how I can seem so "unaffected" when I tell them about Corinne's passing.

I truly believe in finding the positive in really crappy situations. I'd take Corinne back in a heart beat, and spare Kaitlyn from her prematurity related issues, BUT I have found: amazing new friends, strength that I never knew I had, the ability to help others more than I ever had in the past, getting involved with charities, and the ability to overcome such hardships to come out a better person.

So, please tell me what type of damage I'm inflicting?

Oh and one other thing, I often write how I am feeling at a moment in time. I'm crazy busy. (you can probably tell by my infrequent blog posts). Life is good. Really good. I don't take the time to post as I'm spending time with my kids (and working), which is MORE important than blogging right?

And to the poster after Jean, how dare you say that "Kaitlyn find her voice"...you do know that Kaitlyn has a paralyzed vocal chord don't you? What type of voice do you "want" her to find? You said rebel against me? Do you know how often I hold her tight (when she lets me, which is ONLY in the shower due to her dislike of being held) and tell her over and over how special she is to me, how much I love her and how happy I am that I'm her mama?

sheesh!

38 comments:

Anthony's Mommy said...

I just wanted to say in regards to the losing a twin I know that pain. I lost my daughter at 20 weeks gestation, kept her in for 6 weeks, delivered her, and then had my son Anthony 4 days later. I didn't get to really greive for my daughter till months after my son came home from the NICU (26 weeker). It is a hard line to walk, grieving for the loss of one child, and celebrating the life of the other. People make it seem like you are not allowed to be sad for the one twins passing because they weren't here very long and after all you have another baby *rolls eyes* but that doesn't take the place of the one you lost! You loved them both!! I had a very hard time the first year of Anthony's life. I was scared to death of issue's he was going to have due to prematurity, and I don't think any parent or person will understand that unless they have had a micro-preemie. So it makes it extra hard when you are dealing with that and the loss of a twin. I've found a couple moms blogs that I have connected with that have had preemies and lost a twin and you would be 1 of them!!! I never read your blog and feel annoyed with you! Because I have felt the same feelings and fears at times too!

As for being persistant with your childs care I am proud of you! I know Kaitlyn had lots of issues with eating and if it wasn't for you getting her the right therapy and help she wouldn't be where she is today! Eating like a champ! My son hasn't been talking or babbling and he's 2 now. I've heard many people tell me "Oh he's a boy he'll talk later" or "just give it time, he's fine" But in my gut I knew something was wrong!!! Finally after exploring multiple avenues and seeing different speech therapist that really had no idea what was going on I went and had his hearing tested. He has severe hearing loss in his one ear and mild hearing loss in the other from fluid! Keep in mind he's never had an ear infection. But if I wasn't persistant and being an advocate I would of never found this out! Or it would of been when he was older. So the sitting back and letting things just happen doesn't always HELP your child!

I just wanted to tell you all this and I think you are a great mom! Please keep writing!

Kim

Estela said...

A friend once told me there are 2 kinds of people: those that have kids and those that don't know there are 2 kinds of people.
I now think there are 2 kinds of parents: those that have medically complex kids and those that have no f^&*ing clue what it is like to loose a child or come close to loosing a child.
The posters you refer to in your email have clearly no clue what an awesome job you have done to manage your children's health.

Jennifer said...

That commenter obviously hasn't read your entire blog, or hasn't even had a sliver of experience with delayed children and LOSING A CHILD. You have EVERY right to vent, and talk about your children in any way you want to. This is YOUR blog, last time I checked. If they don't like it, they can STOP READING! Duh! It's a simple simple solution. They don't need to bash you for talking about your children and ESPECIALLY about Corinne. Your baby DIED. It doesn't matter how long ago it happened, it still hurts. They don't know what goes on at your house on a daily basis. They haven't even seen a recent video of Quinn! So how can they say that he is just developing at his own pace?? She's pulling this out of her ass!! I can't believe some people, they just need to leave you alone, Liz. You keep blogging whatever you want to blog. "Jean" can go SUCK IT for all I care.

Sorry, but this has hit my last nerve. Why don't they just stop reading instead of making you feel like a bad mother? Because you are an AMAZING mother! I don't know how you do it, honestly. You blow me away, Liz. Your blog has inspired my future career. That is how much your blog has influenced me. My future plans are thanks to YOUR blog.

Liz, never forget it!!

Leanne said...

I've also been a long time reader but have never commented (blush). But I just have to say that I cannot believe some of these commenters. That people have the nerve to come into your personal space and criticize the small glimpse of your thoughts, your feelings, your fears... it's completely and totally irrational. We're not a part of your life so we have no idea what your day to day looks like.

I guess I just want to affirm you and encourage you and your blogging. It's a tough job parenting preemies... and I cannot even imagine what it's like to lose a child, to celebrate one life and mourn another. You are an encouragement to many.

I'm almost tempted to discourage you from even responding to these people and giving them a voice, but I won't. It's YOUR blog and you can say what you want.

Your children are adorable and I'm rooting for them, and for you!

Nancy Brown said...

I am a mom to a micro preemie who was born at 25 weeks. While I was persistent in feeling like we were missing something and researched like crazy I have been the one to point out MAJOR problems. Tyler has Cerebral Palsy, hydrocephalus, ROP and the list goes on. Every shunt malfunction has been caught because me as his mom had a feeling. He is 4 and doesn't talk. It is me as his mom who is having him evaluated for Apraxia of speech. If I didn't ask for help on these things he would NEVER have gotten any help. Whether it be more speech or DEATH with shunt malfunctions. I can't even begin telling a "normal" mom what it feels like to KNOW there is something wrong and have someone else say They see nothing wrong. IT is the most frustrating feeling EVER. Then only to be rushed into emergency surgery so they can feel heroic and "save" Your dying child.

Yes, while some think we should not focus on the disabled part, how can we not. It is RIGHT in front of us everyday. While a mom is signing up her 4 year old to play soccer mine can barely walk. How can you not notice he is different. As we attend 4 days of therapy so he can function somewhat normal you miss out on normal kids and mom playgroups. While we deal with nine specialist, a normal mom sees her pediatrician when they have an ear infection. There is nothing normal about having a micro preemie. Any one who says there is. isn't being honest with themselves or with others.

If you really want to start leaving mean comments on a blog go start looking around the blogosphere and see she is NOT alone and isn't making it up.

Zack's Mom said...

Truthfully...she is the person I run into who thinks my kids "spits up" or will eat if he's hungry. She just has no clue. I understand...I really do. When you're part of my world you're going to hear about Zack...a lot! My world centers around trying to build him a healthy relationship with food...It's people like this that are insensetive because they haven't lived the heartache and utter abject misery of losing a child...or spending hours trying to get a child to take a nibble...or never going anywhere because your kid projectile vomits constantly...BUCKETS...It just comes from ignorance...and I mean that in every sense of the word. These blogs are ways for us to get things off our chest...to celebrate successes and commiserate over downfalls...I enjoy taking the journey with you and it makes my journey a little less lonely. This blog just isn't for her...and that's OK.

Kristin from The Krumwiede Six said...

Liz-

YOU ROCK!!!

nuff said

Linda S. Cina said...

I have a preemie born at 33 weeks. Though so far the only issues we have is her reflux, heart murmur, and being small I will always treat her with a special care. I will never forget she was a preemie and i will always remember things like adjusted age, etc.
I just want to say that you ROCK! I follow your blog with my heart open to you. Hugs always.

Amy said...

Sad- I guess it's what happens when we open ourselves up on a public forum.
Please don't get discouraged and stop, however. Your blogging/ writing has got me through many a tough time as I don't feel so alone and frustrated.
And I appreciate your research- it has helped me take my son much farther- quicker- having heads up and some direction in solutions.
It's a very scary thing being a micropreemie mom. There's no blueprint on what to expect, just that you need to consistently renegotiate your expectations. You always hope and pray for the best- all while being prepared for something else, so you're not blindsided.

There's no authority to lean on- as there aren't enough studies to make proper conclusions.

Often, you're left on your own to figure it out for your child and family.
Your voice in that darkness was one of the first I found.
I appreciate you and this site.

The Gonce's said...

"Jean" had no right to say any of those things to you. I do not often comment on your blog but I read often. My husband and I have had two twin pregnancies and have lost a twin in each one. I will always remember that I should technically have four kids and not two, but I love the two I have with all my heart and more. I can relate to your feelings of seeing Kaitlyn playing and talking to herself and it hitting you that she should have someone else there playing with her...it's a hard thing to deal with, but we do.

You are a wonderful mother who loves your children and you work very hard to address their needs and to get them the best that they deserve.

abby said...

Hey Liz,

Keep on doing what you are doing. Those that don't get it aren't worth the energy. I find this in my real life, and also in my virtual life.

And in terms of early intervention---my strong belief is that it can only help and never hurt. It does sound to me like Quinn has an issue with stiffness and there's no question in my mind that pursuing things as strongly as you did saved his butt (and a lot of feeding aversion issues down the road) where eating was concerned (remember, I have proof of this one in my difficult-to-feed food allergic 3 year old micropreemie). Anyway, having Quinn evaluated and seen by professionals seems like a very good idea to me and hopefully they'll be at the very least able to allay your concerns and, more than likely, help him with the difficulties that he's having.

Anonymous said...

I just wanted to thank you for the insightful comments that answers to some of the harsh, gratuitous, and irrelevant criticisms made by a commentor in an earlier post.

For the record, I have read your blog entries for almost a year now, and I find most of your post incredibly informative and upbeat despite some of the adversity your family faces. I also find that if you do make 'plaintive pleas' for assistance (see posts like: please help us with feeding issues, etc.), they are not in anyway self-absorbed, navel-gazing, or used to pathologize your children. Instead, you provide an open forum where you can gather vital medical information to help your children and in the process share info. with others. One of the important things about your blog is that it helps parents read/ exchange information with one another about some of the difficulties faced by preemies. In between the medical appointments and consultations with specialists, these blogs are an invaluable service and help others cope.

I also want to say that if you spoke more about Corinne, and even spent twice the time at twin events with Kaitlyn and wrote about them here, this would be absolutely acceptable and totally understandable. The death of a child is something very, very personal and your blog is by its very nature a place to discuss Corinne's death and memory.

And as you mention, social ties and friendships have emerged from twin groups, which means that other twin moms benefit from your presence, and that of Kaitlyn's too. But in actual fact, this is nobody's business but your own family's.

Following Him said...

I am a LONG time reader and follower, but have been sparse on the comments lately. I read this past post and was in shock at the comments that followed. Amazed and shaken that so many can be MEAN and accuse you of such horrid ideas. You are a great mom and ADVOCATE for your children...do not forget that!
~Elyse

Lesli said...

Liz, I am so sorry that you have had to deal with the previous poster. What a piece of work!

I did want to comment in regards to Quinn's stiffness. It is very likely a result of the MPI(Milk Protein Intolerance) and reflux. My friend's little girl was severly MPI and was in so much pain she would stiffen to deal with it. Once they realized what was going on diet wise, and solved that issue, it took several months of Physical Therapy for her to learn to relax her legs. My dd was born a year later, and although she is MSPI, we caught it early enough(3 weeks) that she does not have nearly the issues with stiffness, although she does have some. She is just a little different when it comes to working her legs, and seems to be something that she is working out of and won't need therapy for. I hope that helps!!

Deni said...

Bless your heart - I don't get people.

There are called blogs for a reason. If you don't like what someone writes, no one is forcing you to read it.

It upsets me that people feel the need to be so negative and act like they know it all.

I have a preemie myself - and I have PPD and PTSD and I have a lot of pain and emotional stuff I am working through - does that make me a terrible person, NO! It makes me real.

Personally, I believe you have every right to cry, be upset, research (I do) and be concerned for your children.

I appreciate your response. It's very well written!

Anonymous said...

Wow! Your Happy and Sad blog was both happy and sad. And totally relatable. Funny. Insightful. Full of great details. It's totally true to the experience. I will never get why some people feel like they have to comment like Jean did. That kind of "intervention" is mean-spirited, unhelpful, and comes from a place of ignorance. And your response definitely shows that you know that!

Jenn

Catherine Chandler said...

Oh my goodness. I'm glad you dedicated a post to responding to those comments. Anyone who has lost a child would not tell another mother to get help for their grieving. And what does she think you're doing, sitting Kaitlyn down daily and telling her how much you miss Corrine and how you wish she was there? No, you're doing with it in a healthy way and you should not have to filter your grief when it hits you--THAT would be unhealthy.

Kaitlyn is going to know about Corrine, and many twins share a special bond that stays with them through their lives. They are of the same blood and time, and they share a connection that we 'singletons' can only imagine (my partner is a twin and we have twin friends too).

As far as having delayed children, I am so so so glad that you are on top of things with your children--getting them into EI early does WONDERS. The immense leaps and bounds that I saw the little girl I nanny go through was amazing. I was there at PT to see her first step, and to help her learn how to eat and speak.

You do a fabulous job for your community and family, and I love reading your updates about them! Keep up the good work--you are a trooper! And a great mother :)

Anonymous said...

Ignore them, Liz. You are an awesome mama; your love for your children is obvious with every post. How dare others judge you for your grief.

Stay strong, peace and *hugs*

Kim said...

I've followed your blog since 2005. That is a very needy woman who envies the "attention" you get and found a way to get some for herself.

She is literally no one to you and your darling children, who I have checked up on now for three years :)

You don't need to justify a thing. You are admired far and wide, and someone got jealous. Keep up the good work Liz, you DO rock!!

Michele said...

Liz...I am just floored that someone could write these things to you...must have been someone with a perfect life...LOL!!!
No one but us moms of surviving twins will ever...EVER know what it is like...it hurts very bad. Seeing one of your twins but not the other...almost torture...but then again, its a blessing. We have it harder than a mother who has lost their singleton because we see what could have been. We lost that special "mom of twins" badge when our babies passed away.
Then you throw in the Extreme Prematurity in there...HELLO!!!This is something that WE have to deal with DAILY. Not made up. We dont sit and look up what "could be" wrong with our micro preemie child.
I am taking total offense to this poster because I am pretty much living in your footsteps. You are a great mother to your children. This is from a troll who is trying to get you upset.
You hang in there and give Kaitlyn and quinn a big hug from us here in Ohio!
You know...I love reading your blog because it is so upbeat. My blog...well...I've been taking this whole thing a little harder than you...and it shows in my posts. You give me the courage, strength and hope that I need. I look up to you and admire you as a mom and as a woman. Thank you for helping me through losing a twin, having my twins at 23 weeks and now, all the problems (because they are REAL PROBLEMS...not just made up ones) that we are facing with Kenny.

Blessings From Above said...

You are an amazing mom. You have enough on your plate without having to deal with clueless commenter’s such as Jean. Hang in there!

Stephanie said...

Oh man I wish I could just hug you right now. Long time reader here. As I have said before, I started reading your blog after my daughter, Charlize, died at 15 weeks into my pregnancy. I was terribly sad and depressed and turned to the internet for support and found your blog. This Jean woman must not know what it's like. She can't possibly. My daughter is always around and playing with her sisters. I totally believe this. I believe Corrine is too! For me it's not, "Is she around, is it real?", it's "How can she NOT be around? Of course it's real!" Of course you will be sad. That's because you have a heart! It's because of my situation and then because of yours that I am now a mommy in college and getting my degree to work in Early Intervention. It's because of your kids and my Charlize that I will get to help others some day! So thank you Kaitlyn, Corrine, Quinn, and Charlize! Your little lives are going to help so many others! Hang in there Liz, you are amazing!

Stephanie

Anna said...

Dear Liz,

As a super-busy working mother of two, your time is precious. I feel bad for you that you had to waste your time answering these comments. I would be furious!

This is an example of the 'mommy wars' at it worst. I suggest to enable comment moderation for a while. You will not have to waste your time answering morons unless you want to, and you'll feel good by cutting their comments out.

Estela, very nicely put.
Ciao.

Stacy said...

Oh Liz, I'm so sorry. What terrible rotten things to say.

As a mom of twins, you will always be a part of our "club". Parents of medically fragile kids - they advocate for their kids. That is what they do. And, often that is following hunches or feelings long before they are full blown problems.

Hugs to you.
Stacy

Anonymous said...

I have pretty clear proof that there are angels in our lives. I didn't ever really believe this and still wouldn't had I not been there for my grandmother's last conscious moments.

She was in the end stages of ovarian cancer and had been on morphine IV for several days, during which she had not been responsive. I went to visit her and started talking to her and she opened her eyes and talked to me for about 15 minutes.

I'm now a geriatric OT; I'm around death a lot. She gave me the clearest idea I have of it.

First she told me that she had been seeing all of these people she'd known in her life walking before her, but she knew all were dead. She said they were so happy to see her and greet her.

Then she turned to a chair (empty) in the corner and asked who that beautiful woman was. I asked her what she meant and it was very clear it was an angel. Then she smiled, closed her eyes and never moved again. She was gone 12 hours later.

I've gotten so much comfort from that over the years. More than I can say, in fact.

(Also, that same grandma? She mourned for her baby who died her entire life. Even near the end of her life she spoke to me of the baby only once and she cried then. Nothing ever makes that loss better. If it did having additional children would serve as a nice "replacement". It doesn't work that way, so you get to mourn.)

Shannon and Carey said...

Oh helllllllllll no! Who the hell does this woman think she is? Liz, I have never met you but I have followed your blog for about 3 years now. The things this person has said to you is beyond crazy!!!! I had a friend who had triplets and lost one. Is she not supposed to be a member of the multiples group anymore? NO.
omg, I can't even think straight. You have endured a heartache that a mother shouldn't EVER go through. Kaitlyn is who she is today because of you and Brian. How hard you have fought for her and it's not been an easy road. I cannot even imagine how many followers you have; people who seek your guidance about losing a child, feeding issues. How dare this person tell you to get over your grief.

I'm sorry she said these things. Liz, I like you because you tell it how it is. Life ain't pretty sometimes.
You are an AWESOME mother!
Your friend in Austin,
Shannon :)

Anonymous said...

Liz, you are still my hero! Mean Jean has a couple screws loose. You are balanced, sane, and positive in the way you deal with your kids' issues and deal with grief. I agree with Anna -- sorry you had to waste your time replying to such clueless comments. And the fact that you did it calmly, respectfully, and eloquently shows what a sensible, intelligent, and emotionally mature person you are. Cheers to you-- Ricki

Anonymous said...

Hi,
I posted earlier, and wow, look at all these supportive comments, which you deserve.

I'm sorry about those cruel comments made by Jean, and I wanted you to know that I think your blog is great.

I lost a baby due to PPROM last year and I find your blog a real support that I come back to again and again.

Thank you, Liz!

Anonymous.

Anonymous said...

C'mon...someone must have dared Jean to say that or something. I just can't imagine why someone would willingly post something so ignorant on a blog created for following your children's lives. And yes, that will include the good and the bad times. I think if Jean had actually been a follower of the blog she would have noticed that the good times faaaaar outweigh any bad times thrown at you! You know you're doing what's right for your children! That's why God gave them to you. BTW I've been reading your blog for a couple of years now b/c my daughter was born September 27 2005 at 27 4/7 weeks and we just had so much in common with our children. You've done a beautiful job! I know you feel blessed but know your children are also...

Vidyut Kale said...

Hi Liz,

I read some of your posts, and their comments. What I saw was that the readers here are very involved, and they care. They deal with what they find out differently, and some offer you unconditional support, others try to push you out of all the sorrow you see and see brighter things, which makes you defensive, as those are very real concerns for you.

I don't have a child yet. I am pregnant, so I have no clue how I could see myself acting in your situation, or how is a good way of seeing things or not. What I do know, is that if such devastating things happened to me, I would find it very difficult to keep going with a smile on my face.

Yet, I know that in any situation, when I find myself looking at overwhelming odds, somewhere, I'm losing sight of things that could help see me through. It is difficult to focus on anything other than my difficulty and it becomes a self-perpetuating cycle, where my awareness of problems gives them a greater place in my life.

You sound like a wonderful mom, and I don't know that you do that at all, based on what little I read of what is essentially a place where you obviously pour your heart out when things get too much.

A warm hug to you. I care too. Take some time out to celebrate the joys you find to pamper yourself and be all the more stronger for the battles.

If you already do it, never mind.

Love,

Vidyut

Kathy Ramsey said...

I will keep this short. My immediate, gut reaction is that Jean has a complete disconnect with regard to just how much parents of micropreemies (and I am one) have had to advocate for our children. This is why we have to do our own extremely detailed research when the best specialists in the United States blow us off and can't figure out the first thing to do about feeding problems, for example.

kathytwins said...

This woman obviously has no idea as to what it feels to loose a twin and have a premie. Guess what: I have and I am proud of you. I also had a IVF and became pregnant with twins. An amnio caused me to have PROM and I was lucky in that it sealed. I had a very complictaed pregnancy and at 31 weeks, I found out that I lost one boy and delived the other one prematurely and he spent 8 weeks in NICU. When he came home, he was on oxygen for 4 months and we struggled with severe reflux. He is now eight months old. Every day is a struggle with a baby with medical issues and a premature baby. I also had a hard time bonding with my baby while I was mourning the loss of the other twin. To add to it the IVF baggage and recovery from months of bed rest.
So Jean, if you have experienced something similar, I welcome your comments. But if you have not, please stop judging thoseof us who have.
You have given me strength to make it through those dark days after my PROM and I emailed you then and will always appreciate that you have this blog. Please accept my cyber hug.
Kathy

Anonymous said...

I am almost completely in agreement with Kathy, except for one thing. Unless Jean has been through EXACTLY what Liz has been through, with ALL of the difficult pregnancy issues (both times), with ALL of the NICU experiences (both times), with all of the feeding and developmental issues (again, both times!), and all of the loss (remember, Liz lost a triplet before she even lost Corrine), I don't welcome Jean's judgment and criticism on how Liz thinks and feels about and is raising her children and how she grieves the loss of her beloved Corrine.

And even if Jean experienced exactly the same things, no two people experience grief in exactly the same way. It may surprise Jean to know that there is no convenient timetable for grief, particularly for the loss of a child. Unfortunately, we don't wake up one morning and suddenly find ourselves "over it". I only wish it were that simple. Believe me, it has been five years, and it still sneaks up on me sometimes. I watch my surviving twin daughter playing and I suddenly "see" her sister, or at least where her sister should be, and I start to tear up, but can't, really, because we have to keep on going, don't we? Anyway, I just didn't want to risk it sounding like we might be inviting comment from Jean again. I had my fill the first time.

Mom of twins - one in heaven and one on earth

The Hillbergs said...

Hi Liz, I just wanted to tell you that I stumbled upon your blog last week. We have 2 children, our 2nd was born at 34w (my water sprung a leak at 32 w). Reading your blog has been so interesting, you are an excellent writer and I enjoy the honesty. I spent a week reading every post (I have 2 little ones -- can only escape to read your blog every now and then!). I feel like I know you - which is nutty - but just wanted to say thanks for all your information! I have a blog too about my family, but its not public (personal reasons), but if you wanted to read it - I'd sure let you! I wish I lived in SF - I love that city.
Jennifer

Miracles said...

Liz,

Don't even bother with comments like these. I have come to find out through my own blog that there are people in this world who are just down right EVIL!

If she truly has a problem with your blog and what you write then she has a choice to read it or not.

Personally, I hope she opts for NOT reading it because the words you write are your experiences with your children and besides, it's your blog, write whatever you want. Don't let miserable individuals like this bring you down.

HUGS!!!!
Shannon

rhysgirl said...

i know this comment is way late, and you probably won't see it. i just wanted to say that i've lost track of your blog in the past weeks due to busyness here at home.

i can't believe someone would dare to think that they knew how your little man was doing without having both a degree in child development and the experience with him to know how he is doing.

when i was in the NICU with our lia, your blog kept me going. the idea that someone else out there advocated and worked hard with their children in a loving manner was so encouraging.

keep it up.

your children are loved and they know it.

Colleen Proppé said...

Hi Liz,

I am ever amazed and impressed with your tenaciousness in solving critical and complex problems for your children. You are a super mom goddess. Why else would you have been chosen as 2009 Family of the Year by March of Dimes? You are a spokes-heroine mamma! When people criticize, you can not let it infect you. Do not take the time to respond to these kind of people. Go on with what is important in your life. Learn to ignore people that hurt and criticize. It is a quest I am still working on for myself. There will always be other parents we don't get along with at our kids' schools... Unfortunately for us, it can feel like "high school" all over again. My one piece of advice is to be yourself, love yourself, and love your kids. Ignore any one that doesn't help you on that mission. : ) -Colleen Proppé

Anonymous said...

I'm reading your blog from the beginning after a dear friend gave birth to her twin girls at 23 weeks and lost I within hours.

I don't know if you'll ever see this comment, but you are a WONDERFUL MOTHER!!! Until you've been through any of what you've been through it's impossible to understand and to criticize you for having a vent, or blaming you for somehow damaging your children is revolting.

I had a healthy full term pregnancy but my beautiful daughter, who is nearly 10, has struggled with many of the issues you describe for extreme preemies - gaze aversion, peer aversion, sensitivity issues, hyperfocus/ADD, extreme anxiety (believe me, a toilet phobia is NOT FUNNY, though I've had many people laugh...), and she has suffered, in part because her father has, until recently, refused medications, but also because she's so 'normal' one on one. In the six years she's been at school she's never been invited on a playdate and has only been invited to one birthday party in the now almost four years she has been at her current school. I understand what it's like to feel pain for your children.

It's wonderful that you have such a fantastic support network - I don't fit in with other mother groups either, but my child doesn't have a diagnosis (no developmental delays, she's not on the Autism Spectrum... and people just don't understand. I'm lucky to have her in a wonderful school, with wonderful parents who pay for her wonderful therapists/behavioral aide.

I've fallen in love with Kaitlyn and Quinn - kudos to you for fighting so hard for your children - again, unless you have had to it's impossible to understand.