Friday, April 8, 2011

What Not to Say

I have been thinking about this post literally for over a year. I have heard some crazy and downright irritating things come out of people's mouths regarding Jack and having a son like Jack. I know for the most part, people are clueless and are only trying to make some sort of connection to our situation. But, words have POWER and can literally set the tone for days and weeks. So here is my personal list of what not to say to a mom of a preemie or child with special needs:

-Is Jack doing _______ yet? I literally get this question on a weekly basis. It is such a downer of a question for a mother whose child is definitely on his own timeline when it comes to development. And on top of that, I don't know why our culture is so VERY obsessed with following this very specific chart or guideline for things like rolling over, crawling, walking, talking, etc. People are so competitive. Even with a healthy, full-term child, people can be absolutely ruthless when it comes to comparing their children and who meets a milestone first. I mean, just look at Facebook or go to a play date. The topic of conversation most certainly revolves around what my amazingly brilliant child is doing. "So my child is crawling! Well isn't Jack around their age? He's not crawling yet? Oh... well... um... he will get there eventually". Trust me, I get these sorts of questions constantly from therapists and follow-up clinics and rightly so. But I don't need a constant barrage and reminder that my son is developing at his own pace from the common layperson.

-Oh my son (or cousin, sister, whoever) was a preemie. At this point I usually ask at what gestation they were born. You'd be surprised at the answers I often hear. "Oh around a month early" and "It was so scary" and then proceed to tell me how horrific it was to have a baby at 36 weeks and spend a couple days in the NICU. Well I don't know if I really need to explain why this comment is so irritating. Jack spent 100's of days in the NICU. And here is the truth, you really can't compare the situation to Jack's unless the baby was a micro-preemie. Comparing your personal situation is very tricky, so it’s best to tread lightly.

-I know a preemie who is like a NORMAL child now. What is normal? And because Jack has health problems, it makes him like some sort of unfortunate alien? Humans are so cruel to the weak, constantly putting them in a separate class.

-I had a horrible pregnancy. This comment is one of those annoying ones that begs an "oh really, why?" I then normally hear something about how the person was so uncomfortable, had morning sickness and then wasn't able to breastfeed. Peppered in the conversation are outrageous statements like "I was basically starving my baby because he/she wouldn't breastfeed." In my mind, I want to yell out "why didn't you give the baby some freakin' formula!" When your child doesn't eat or have the ability, the whole breastfeeding v. formula debate is pretty much a non-issue and is rather trivial. And when your pregnancy was ended rather abruptly, after months of illness, it’s very hard to relate to someone who had a full-term pregnancy.

-So now that Jack is almost 2, he's pretty much ok now, right? Really? REALLY? Can I please chalk this up to someone just being a complete idiot? Too harsh? Maybe. But that's really how I feel sometimes. I spend a whole lot of exhausting time explaining each and every detail of Jack's health history to people. It's like they demand I prove X, Y, and Z to them. I get questions like "well I thought you said Jack was eating now?" Do I really need to explain the intricacies of oral trauma and the psychological effects it has? Do I really need to explain why preemie lungs are susceptible to pneumonia and NO, it is not good for Jack's immune system to get sick now and again! It doesn't "build up his immunity!" Many babies that are born extremely early, cannot simply "grow out" of their prematurity. There are often long lasting impacts.

-Does Jack have a short life-expectancy? This has to be one of the most hurtful questions one could ask. Does a mother ever want to be asked about the possible death of their child? It is really a sick, twisted question when you think about it. It totally takes curiosity to an inappropriate place and covers what truly matters - the heart and feelings of the person being asked. Just because we have been so close to death's door with Jack, does not mean we carelessly talk about life-expectancy or even quality of life for that matter.

-Complaining, of any sort. I have seriously debated shutting down my Facebook page because I just can't stomach the "wah wah wah" complaining status updates I read through. I am especially sensitive to pregnancy related complaining. I seriously debate whether I should comment or not each and every time I read a complaint ridden status update. But I normally talk myself out of it, thinking it's not worth my time. And definitely please don't complain in front of me. Please don't complain about your healthy children, AT ALL. Just don't do it, because it shows how out of touch one is with reality. It shows that the person has no perspective on life, the frailty of it, or how good one has it (especially in America). It shows how self-absorbed someone is. It is such, such a turn off to me.

-Comments about Jack’s appearance. Here is another area that can be very touchy. Preemies go through many things, medically speaking, that can alter their appearance. For instance, our son has two shunts to regulate his hydrocephalus which was caused by brain hemorrhages on his second day of life. We have actually had people say to us “wow! those shunts are sure big!” Not good. Many preemies also have misshapen heads (from being outside the womb too early and various other reasons) that require helmets to reshape their skull structure. And most micropreemies won’t have those pearly white baby teeth because of the intense amount of antibiotics, intravenous nutrition, and liver medication that is used to save their lives. It’s a small price to pay. The eyes are another area where people often feel the need to comment on. Our son has two separate issues going on with his eyes. He has ROP (Retinopathy of Prematurity) and the brain bleed makes his right eye very weak. He will eventually need glasses. We are just thankful he isn’t blind! A lady once exclaimed to me (very loudly) that “he has a dancing eye!” Not good. This list could go on and on. Jack has a feeding tube. Try using a feeding tube in public… not fun. I could talk about the need for adaptive equipment and mobility issues. That Jack will probably walk ”funny”. We are just thankful that he MAY be able to walk! People love to comment about appearance. We certainly don’t need someone pointing out any of these things to us! And just look at the picture as the header of this blog. My boy is beautiful.

-Comments about our so-called lack of a social life. This happens more to my husband than me, but we are constantly getting questions about why we aren’t at certain events, happenings, and get-togethers. Being the parent of a child with health problems is very, very time consuming and exhausting. Jack is tube fed, doesn’t have much mobility, has constant therapy, and sprinkled in there is some play-time. It’s not easy for either of us just to drop everything and grab a coffee with a friend. We have to plan it out with Jack’s schedule and allow each other to have enough down-time to get some rest. I don’t think my husband has rested in 2 months. He doesn’t get a break. When someone says we are “stuck up” because we’re never able to hang out, it is really irritating and mean. When someone gives us a hard time for not being able to go out to something, it is hurtful. When someone asks “where’s Jessi and Jack?” when Jon is out alone, it is extra careless! For some reason, people refuse to comprehend that Jack can’t be out in public during cold and flu season, no matter how much we explain things to them. This gets exhausting. We would just love to get out together as a couple, too. It’s hard to find a babysitter that knows how to care for a feeding tube and g-tube emergencies. It is no fun showing up at family-centered events all by our lonesome. We often skip these to be able to spend time together at home. Our lack of a social life is not a reflection on our thoughts or feelings towards you (although in our limited time, we choose to be around positive people), but purely our reality while being Jack’s parents.

-Placing Blame. There are many medical reasons why premature birth happens. Most, if not all, are out of the mother's control. The only exception I can think of is illegal or overdose of harmful substances (alcohol and drugs). Beyond that, it's really not up for judgement. I just read tonight on Facebook (yes again, oh the joys of Facebook) where someone was speculating why so many women are having preterm birth. She wondered "if prego mamas are just doing to(sic) much/doing activities that our mom's wouldn't have dreamed of doing while they were pregnant." Can you imagine how I felt when I read this? I dreamed and discussed with my husband every possible (awesome) comeback I could think of. But you know what? It's not worth it. I just de-friended. Thank goodness for the de-friend. To insinuate that I caused the premature birth of my son because I was "maybe doing too much" is pretty much akin to saying that all us preemie moms almost murdered our own children just by living. And trust me, my four months of bed rest pretty much flies in the face of this so-called "Facebook Friends" assessment.

To end, here are some things you should say:


-How are you doing?


-How is Jack doing?


-Is there anything I can do to help?


-I am praying for you!

I know I could add more to this list, but I just felt an overwhelming sense this morning that I had to share. Please don't take your words lightly. If I ever say something that is offensive, let me know! I don't want to remain ignorant to someone's pain or ways I am furthering their hardship by the words I speak.

May the words of my mouth and the meditation of my heart be pleasing in your sight, O LORD, my Rock and my Redeemer. Psalm 19:14


*UPDATE! Make sure to read this. *


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104 comments:

Chet and Brianne said...

I can see how those comments would all be insanely frustrating! It seems that there are so many people in the world that don't realize all the complexities micro-premies must endure and the effects throughout their lives... and all the hard work that you and Jon are putting in to help Jack stay healthy and to reach each new milestone. Reading your thoughts and frustrations is good for me... it helps me to remember to think thoughtfully when speaking to my patients and all of my friends who are moms. We all need to be uplifting each other, not comparing how a child "should be doing", etc. Praying for you, Jon and Jack... you are an amazing mom and you have such an amazing son!

Shannon said...

BRAVO - a couragous, enlightening, educating and thought-provoking post. Thank you, Jessi!

Lindsay said...

I'm so sorry that you get such a barrage of inappropriate questions, Jessi! It honestly makes me sad, thinking about all of the hurtful, mean, flippant, cruel things you've heard. Why aren't people more thoughtful of others' feelings? As far as facebook is concerned, just hide people who complain all of the time (or delete them altogether, although for an "avoider" like me, hiding works wonderfully!) I can't stand "Debbie Downer" types, who can't seem to be grateful about anything in life, as well. Overall, I'm glad you posted this. It reminds me to choose my words carefully, and to be all-the-more mindful of the effects my words have on people's feelings. We have power to either build up or tear down...I want to be a builder upper! :)

Julie said...

Glad you posted Jessi! It needs to be said! We can so thoughtlessly and carelessly hurt others with our words. And I agree with you on the facebook thing...I get super annoyed anytime someone is complaining about their husband being gone for a weekend!!!

I am so proud of you, your honesty and your tenacious commitment to Jack. He's so blessed to have YOU as his mama.

Chelsea said...

Wow Jessi, I have to say THANK YOU for posting this. I wish everyone in the world would read it! I have been hearing these same questions/complaints for the last 2.5 years and let me tell ya, it sure does get old. I really try to remind myself that most people MEAN WELL but just really have no tact or have no way to go about it. Then there are people who are just morbidly curious and stupid. I have one friend in particular that is always asking me, "So when do they think he will start talking?" I want to say, "Oh 'they' say he will start talking on June 9th at 3:27pm." Like, seriously!? No one knows when he will talk or how much he will say. Comments like that are just a constant reminder that he is NOT talking. I already know that, don't need to be reminded. Ugh, anyway, thank you for posting this. I wish I kept up with my blog so I could steal it and repost it, because it is fantastic!

Babs said...

Great post, Jessi. I'm one of those clueless types. I never know what to ask...so I usually don't. But, I constantly wonder how your little guy is doing. And, I always want to know how you are doing. And, I'm always sending your family all the positive energy I can possibly muster. I love your honesty in this post and your strength.

Emily Real said...

"amazing mom" "courageous" "honest and strong". I am copying here, but wholeheartedly agree! I want to affirm who you are, Jessi, especially in your "tenacious commitment to Jack"--so true and well put! I agree that this is an important post, and one people need to see, so thank you. Also, thanks for helping us with what TO ask. Can't wait to see you this weekend...and you betcha I'll be asking in person if there's anything I can do to help! Love you!

Lori said...

Jessi,
Thank you for the reminder that most of us have no reason to EVER complain. To be honest, I didn't know that Jack was struggling so much, so I've likely been too nonchalant about your life when I've seen you. So there's another heads up for me that that beautiful little boy is still fighting and that I need to start praying for him again. If you need to get out of the house to art and craft, please let me know!!!
Lori

Jessi said...

Hi!
My aunt Laurie just told me about one of your recent blog posts and wow....I am soooo glad I am not the only one who is totally annoyed with people's stupid questions and comments. I just tried to post a comment on your blog (I was so moved that I had to say something!) but it didn't let me publish for some reason, so I will put what I was going to say here:
Hooray, Jessi! Thank you SO MUCH for writing this! I can't tell you how many times I have thought the same things. Man, it makes me want to write something similar on my blog...because people don't know. They really don't know. There are so many days that I also feel upset about something that somebody has or hasn't said (I think I can count on one hand the people who have asked me how I'M doing).
The fact is that people who haven't been in this situation really don't understand at all...and they just don't know what to say. Even the doctors who smiled and said a big 'congratulations' to me when our girls were born (congratulations FOR WHAT? For having 2 babies who might die? For entering the worst nightmare of my life?)...or the friends who think that just because the girls were 'small', it doesn't mean you should count their age from their due date (they're 5 months old, so they're sitting up and getting ready to crawl, right? Um, no...they are laying on their backs on a blanket on the floor like newborn babies usually do)...or the lady who said she totally knew what I was going through because her baby came 5 weeks early...or almost everyone who thinks that just because everything is going well now that the girls are and will be totally and 100% healthy and fine, that they are miraculously recovered (maybe that's my own fault because I make everything sound so positive, but that's because I don't want to drown other people in my own misery and worries every day)....or the people who think that it's ok to come and visit us because they only have a bit of a runny nose (a bit of a runny nose to a healthy adult can equal pneumonia and ear infections for the girls).
The only thing to remember is that in almost all cases people don't mean any harm and they just want to say something but don't know exactly what to say...but of course that doesn't make it any less hurtful. There are just different degrees of pain in this world and those who haven't experienced real heartache think that the minor bruises and scratches are a really big deal....because to them, they are....because they don't know.
Sorry I wrote so much here, but I guess I had something to say....maybe I need to work on my own blog. :)))
Take care of yourselves and give a big hug to your Superman from my little Wondergirls. :)

Kelli Johanesen said...

This is a great post, Jessi. I am dumbfounded at the completely insensitive things people can say. I'm going to post this on my facebook page, if that's ok. It's a great reminder for everyone.

Jessi said...

Kelli - totally fine with me!

Bonnie said...

My first was born at 31 weeks at 2 lb 15 oz and did not really have much trouble, she is now 4. My second was born at 24 weeks 1 lb 14 oz and we have had so many ups and downs. She is now 16 months old. People keep telling me I need to let her out more so she will build her immune system. She was just in the hospital for 2 weeks because of the flu and needed 2 blood transfusions in the hospital. Here we are three weeks later and my other daughter is having a birthday party. People want me to bring my youngest. I refuse to have her around so many 4 and 5 year olds, but people keep saying the ignorant thing. “Bring her it will help build her immune system to be around all those kids”. No thank you, I do not want to spend more time in the hospital with her then I already do. People just can’t imagine the things preemie parents have to watch out and look for. Sometimes I feel like I am raising my kids on a completely different universe then other people.

Jessi said...

Hi Bonnie!

Welcome! I so agree with you and get where you're coming from! The whole "build up their immunity" arguement doesn't apply to preemies who basically have ZERO immunity. In fact, I've heard it take until 2 yr old for their lungs to heal to a newborn stage! Do people even take their newborns out around germy people? I don't know.. but I hear ya! Do what you have to do for your child. Hopefully you can surround yourself with people who support and understand!

Scott and Nancy Ward said...

Jessi, Scott and I have prayed for you guys and Jack lots. We keep up from Paula and your folks. We are sorry that there have been hurtful or insensitive things said. Let US say that Jack is such a beautiful boy... wow amazing pictures. We will continue to pray for all of you. We will pray for wisdom and insight for the doctors, for joy and strength for your family, that there will be great moments, even though you guys have been through some challenges. We think so highly of your whole family, and know that you are people of strong faith. It is just a journey with these ones that start so tiny... We didn't even have 1/4 of what you have walked, but we do know that God is with us on all roads, and we pray that you guys will always sense His presence with you.

Alyssa said...

Again, so great to read your words! Thank you for updating! I would love nothing more than to spend an afternoon with you and discuss all these things to get it out of my system. :)
I'm so sorry that you've still been hearing unwelcome comments.
The appearance questions/comments have really bugged me too (they're so hurtful!)....like someone saying, 'oh, their heads look so much better now', or asking, 'the cute one or the other one?' Cruel! I don't think you should say those kind of things about healthy babies, let alone those who have struggled to survive. All I want to hear is, 'the girls look great....they've gotten so big...they're so cute...they're so sweet!'
The social life thing is really hard. When you do have a moment of free time, sometimes the last thing you want to do is tread out in the dark winter weather when you're already exhausted. It's funny how people can be so totally in their own world that they can't understand that.
I also find it funny how people complain about their 'little' problems in front of us and expect us to feel sorry for them. Last weekend my husband was at a birthday party and one couple was going on and on about how it's SO difficult to go anywhere with their child (healthy, 1.5 years) and they don't know what they're going to do about a vacation because it's SO hard to go anywhere with a kid. HA! It almost makes me laugh. :) When you know that the man sitting next to you has 3 babies, 2 of whom are quite sick, and that this man (even after the roughest year of his life) possibly won't have the option of even going on any kind of vacation this year...you just don't complain about those kind of 'problems', not to us anyways! Having one healthy kid is definitely not a 'problem' in my book.
I think always when you go through a crisis situation, there are people who just don't know what to say and little things that wouldn't normally bug you end up sticking in your head forever. I remember also when my brother died, I would get SO MAD at people who were complaining about how annoying their brothers were. I wanted to just shout at them, 'You don't even know how lucky you are!!!'
Instead of being angry about these things (because they linger in my head for weeks and months...sometimes years), I'm trying so hard to just remember that people don't know. In general, I wish that people would remember to take a step back and think a bit before complaining....think about who your audience is. Imagine that you have a paper cut that is hurting like crazy and the guy sitting next to you just had his arm amputated....you don't complain about a freaking paper cut to that guy!
Phew...thanks for letting me vent a little again. This is actually quite therapeutic. :) Hang in there Jessi....and just try to block out those unwanted comments. Unfortunately they will probably keep dwindling in for quite a few years still....at least from people who aren't reading your blog. :) If you think of some cheeky comments for answering insensitive questions, please share! ;) -Alyssa-

jaymie said...

hey Jessi! I got your sweet comment on my blog...thank you! I hope you will PLEASE let me know if we can help you in any way. It sure seems like our boys have a lot in common. You're doing AWESOME!!!

Emily said...

Your boy is BEAUTIFUL!!!

jules said...

Amen!!!!!!!
I have also thought about shutting my down my facebook as well because I am so sick of people's post and I am so tired of people asking if my son is walking yet.

They don't get it. Preemie development in so different, he catches up in his own time.

I am following this blog!!

JMM said...

Our micro-preemie triplets (born at 24 weeks) are still in the NICU. We often get the "I know someone who was a preemie..."

I know those people are trying to deliver hope, but it is annoying. I find that those people, even those who have given birth, are uneducated about the difference between a 24-week baby and one born at 36. More or less, they seem to think the "difference" is only in weight or size.

Leaping Hurdles said...

I enjoyed this post, Jessi - it really hammered home the realities of micropreemie life. Nice! Thanks for inviting me to read it!

Daria said...

Love it! Have to add that I'm super annoyed when mom's tell me thier kids "don't eat a thing", yet do not have a g-tube.... ahhhh...

I've been thinking about writing something similar for mamalode and actually hadnt thought of any of the premmie comments. People just don't think.

Anyway. great post!

Jessi said...

Welcome Jules, JMM, and Leaping Hurdles - so glad you stopped by!

Jessi said...
This comment has been removed by the author.
Jessi said...

And Daria - you should totally do that for Mamalode!!!

GavinMitchell said...

It never ceases to amaze me how people just can't get it when I tell them that no, we can't go to something because we don't have anyone to watch our son. Due to his medical needs, we never found someone we could train (and afford) sufficiently to babysit him. Thus, we've been out 3 times in 3 years, all of which were when my MIL could watch him for a couple of hours so we could go to a 2 hour movie, then home.
And I'm with you-- I hate being told that it would be good for him to get sick to build up his immunity. Um, NO! Not when the kid has lung disease! He already gets pneumonia every spring when those thoughtless people go places even though they're sick, because they figure "it's just a little cough." Well, that "little cough" gets my son sick with pneumonia, every year.
One of the most hurtful things I've ever heard of, was when another mother of a preemie told her grandmother about the premature birth (at 24-25 weeks), her gram said "that must have been easy, just like taking a s*#@." Yeah, like she had the kid that early just to avoid the pain of full-term childbirth. Like anyone CHOOSES to have their child so early.
I've discovered that the only people I really have anything in common with now (after my son was born), is parents of other preemies. Other people JUST DON'T GET IT!

Kristin Kyung said...

Thank you so much for posting this today. I really needed it! This is exactly how I feel most days we go out. I have a 23 weeker that weighed 14 oz (410) grams at birth. He is a surviving twin and has endured a 170 day NICU stay in three hospitals. I kind of understand your frustration! My little guy has endured 9 surgeries thus far, everything from pda ligation, ROP, illeal atresia, ostomy bag, paralyzed vocal cord, g-tube, pulmonary hypertension...you get the point. He is amazing in every way! Michael is 19 months old now and is doing very well! Yes, he is doing things in his own time, but he IS doing them. He is just learning how to stand up, say Bah, Bah and learning how to eat baby food. He never sat up or even crawled until 2-3 months ago. This is my normal and it drives me crazy when people, even relatives, ask when he will be "Normal" again. Thank you so much for having the courage to post this today! I am sharing it on my page for friends and family to read. God Bless you and your Miracle!

Kristin Kyung said...

One other thing I wanted to let you know is that I dressed my Son up in funny t-shirts like "Wow, all the ladies keep checking me out"! We tried to make it funny when we went out because of all of the O2 tubes, wiring, g-tube, helmet for plagiosephaly, glasses, etc. he had on when we were out. Michael is still on O2 and fed by a g-tube, so people often stare and say very rude things. People just don't know what to say when they see him and usually it is very rude. Over Easter, I was at the store and encountered the questions and stares by a Mother and her son..."What is wrong with that kid"? The Mother then answered "I don't know but it doesn't look good at all". Really?! She never talked to me at all. Instead they followed us around Target and to the checkout line. Absolutely RUDE!!!! Just know that there are so many of us MP MOm's out there dealing with this too. I can't wait until the day he walks, so I can quiet the questions about "Is he ever going to walk?". IT will happen!

Anonymous said...

This was very informative. I have no children and am completely in the dark as to what may be offending to people who have babies with special needs. I see now that support I've tried to offer may have been offensive.
It sucks being so absolutely clueless and trying to reach out to a friend when they're in need. I actually spent a lot of time trying to think of what to say and totally fudged it anyway. I hope that despite being ignorantly rude they at least got the message that I care.

Jessi said...

Kristin - thanks for stopping by and for your comments! It sounds like you have been through so much with your child. I am glad my little ole' post was helpful!

tbvb05 said...

If that is a picture of Jack at the beginning all I can say is OMG he is beautiful. My God, those beautiful eyes make me think I am looking into Heaven. That is how beautiful he is. Thank you for sharing him with us.

Jessi said...

@ tbvb05 - that is such a nice comment. thank you!

Sarah Pope said...

I have been thinking these same things for over a year now. The one that used to make me so frustrated was when people would ask, "So what is going to be wrong with him?"
Glad to know someone has been there too. I really appreciate how you wrote this...you aren't griping, you are informing, which is obviously the best way to give advice.
Again, I love this and so appreciate it!

Anonymous said...

THANK YOU for posting this list, in particular the "normal" & the "oh my (insert relation) was a preemie" lines. Our daughter weighed 1lb 10oz at birth on 5-6-11, and while I greatly appreciate all the people who are trying so hard to be supportive, the stories of 3 or 4 pound kids seem like a disservice to Hannah. They simply don't understand the stark difference between a preemie and a micro-preemie. It is frustrating, and I feel like I have to just smile and be gracious, but sometimes I just want to scream at people to shut up because they don't have a clue. That's pretty harsh, I know, but it's a slap in the face when I get a barrage of "success" stories for kids born more than twice my child's size at 36 or 37 weeks & didn't have the "pleasure" of her tumultuous battle (which she's currently enduring in the NICU for who knows how long). As for "normal"...I hate that word. Why is my daughter not "normal" just because of her size and/or setbacks?! "Oh, she looks normal now!" That hurts so much. She didn't look normal with her 10 tiny fingers and 10 tiny toes 4 weeks ago?! Did she not look normal sleeping peacefully because she fit in one of my hands instead of my arms? I'm ranting; I know. It's just hard when you look at your beautiful child and see a soul that is strong & worthy of all the love in the world, and it seems that so many out there - unwittingly - want to tear that kid down and bully them from the start. So, thank you for your "rant". I think it helps others to know that their words can sting awfully hard, even when they have the best intentions, and it helps those of us who have similar stories to know we aren't struggling (and celebrating all the small victories) alone. God bless you, your family, and most of all, Jack. He is beautiful.

Abbi said...

I love this! While my Jack was a tiny 1lb 10oz, his maturity helped him avoid major complications so we are truly blessed. At 6 months, he still only weighs 10lbs. I am so tired of people commenting on his size or thinking he's a newborn! I finally started just smiling and nodding, but sometimes if they go on I'll say "Well, he started out at a pound, so yes, he's small!l Or "does a newborn hold and chew on his toys?"
I also agree with much of the comments, especially about the 4-5 lb preemies! Or "I knew a preemie.."
Glad to have found your blog!!!

Anonymous said...

Jack is beautiful!

Anonymous said...

Comparing is annoying. My daughter's airway is only 2 mm. I get a lot of the " my neighbor's cousin's baby has really bad asthma and needs a nebulizer." I want to say, I am sorry to hear that, but my daughter does not have an airway. No airway! I would do a lot for just some bad asthma. Any who, good post. Jack is so cute and I think anything and everything he is doing is just perfect.

Zsuzsi Balogh said...

Your boy is beautiful, Jessi.

Jord said...

THANK YOU! I am the mother of 26 weeker that was actually smaller that Jack. It seems like we are in our own little world. Even my husband's family doesn't get why we protect him. You sum up my life and thought. Jack is a wonderful little boy and you inspire me.

Marie Louise said...

I Love this post. While I am among the dreaded "mother's of 3lb babies" group. I really do understand. Even we got looks, and were asked dumb questions about his size, etc. Just a little thought. Don't discount the fear of any mother who has had a child born early, even if it was only a little early. Or a child born healthy, but then develops issues later. We are all parents, we all love our children, and while we may not all understand EXACTLY what your day to day life looks like with Jack. I'm sure most of us understand love. Yes the mother's of preemies, especially micro preemies, have very steep mountains to climb. But so do the mothers of autistic children, or children born with Downs Syndrome. I learned to give people the benefit of the doubt when I was asked for the 9,000th time "how much does your baby weigh?" When it comes to babies, most people, generally, really are not trying to be rude.

Jessi said...

I'm definitely not discounting the fear, pain, and trauma of what others go through. Whether it's prematurity or a life-long diagnosis. My point is that some who compares their experience to mine, are often not aware of everything that Jack went through.

Tarra said...

I have to say.... I love this post! If I had a penny for every time I have heard stories of others and the differences. No preemie story is the same... I had a micro preemie a bit bigger than your Jack. My son was born at 25 weeks weighing in at 840 grams (close to 1 lb 14oz. He weighed the next day 1 lb 9oz and was stuck there for days) Now at 3 1/2 (born June 14th 2008) is still super tiny and only weighs 23lbs. I get sick of hearing, "When is he going to grow? Will he always be small? Do they think there is something wrong with him? (My daughter our "surprise" pregnancy and is 19 months younger (my big baby! 5lbs 8oz born at 35 weeks same condition as Logan but monitored much closer with lots of Dr visits and medication) I get so sick of hearing, "Wow she is almost as big as Logan! She is going to be bigger than Logan before you know it... YOU THINK WE CANT TELL THAT?! What would you like me to do? Stop feeding her? Ugh! Or the "Is he on track? What happened? Why didn't you carry him to term? What made you want to have another one after that?" or "Wow, he can talk really well for being that early! Does he have issues with learning?" He can understand you! Hes going on 4, stop talking to me like that, about him, IN FRONT OF HIM! The hardest part is when you see that he is clearly understanding what they are saying about his weight and his sister. People just need to us be! Its one thing to bring it up with someone to talk about it, but to be asked about it so MUCH, it just gets old after awhile. I Love my baby boy and he is amazing to me, small and all... Anyway, Loved reading your post... :) Sorry for the rant!

How are you?
How is your buddy?
He is just so cute! He is an amazing kid and you just keep loving him mommy! Keep up the good work!

Jessi said...

Welcome, Tarra! Thanks for leaving a comment. I hear ya! And don't be sorry for ranting... that's what a blog is about :)

Julia said...

Hi Jessi!!! I feel like you have written the last year of my life!!! Our Colin was born at 23 w 2 d and he was a surviving twin weighing 1 lb 8 oz. We have h
Dealt w bilateral brain bleeds ( grades 3 and 4) and were basically told that he won't even live a week .. The wimpy white boys.. Lol. Heart surgery at 2 weeks, ROP, NEC, and the lovely g tube after 22 weeks in the NICU! Thank you for putting your feelings out there because people really don't get it!! Colin turned one last week and I am amazed every day but his bright smile!!! Would love to talk to you more about your experiences!!!

Anonymous said...

You speak the truth, I have often thought these same things but didn't quite know how to express them. Life as a micro-preemie paret is stressful enough without having to deal with ignorant comments! I am sharing this on my facebook page :). My little man was a 25 weeker who spent 4 1/2 months in the NICU. Praying for you and your little one, who is absolutely gorgeous by the way.

Anonymous said...

Thank you so much for this! I am a mom of a 27 weeker now around 3 months adjusted and I love following you on twitter. I feel understood every time I read your blog, just love it- thank you.
Abby ahoryczun@hotmail.com

Dorota, Lily's Mummy said...

Jessi, what a wonderful read! I totally hear you on so many of the points! My girl was a 34 weeker but has had a hard road since her birth with many health complications, NIcU admissions etc. She was tube fed most of her life and was just recently weaned and I get so frustrated when people ask stupid questions related to her feeding issues! as if it's not hard enough with a child with special needs! Anyway, just wanted to say well done and that Jack is absolutely gorgeous!!!

Becky said...

Jessi,

This is wonderful! My second was a preemie... not a micropreemie, but still very much a preemie. God has blessed us and she has caught up remarkably well. But I appreciate everything you said here! I have friends with micropreemies and a cousin who just had her baby 16 weeks early. I will be sharing this with them. Hopefully it will make them smile and feel understood. I'm praying for your family and that God would touch you all in a miraculous way!

Jessi said...

I just wanted to say that I've read each of these most recent comments. Thank you for sharing your stories and your frustrations! So good to know we are not alone in this!!

Anonymous said...

I can definitely understand where these feelings come from. And I want to say this very, very gently, but after two years, if you are still very sensitive and angry about what you've been through, you may need to check out PTSD and talk it out w/ a professional.

And I say this from one who "gets it", in fact, if you want to play the suffering Olympics, I got you beat (which means, really, I'm the biggest loser) because I lost my child after spending days and weeks and months in the hospital watching him have surgery after surgery, and infection after infection, and suffering and coming so close to making it, and then watching him die.

And trust me, I was ANGRY and BITTER and SENSITIVE, too. Which is normal...even for two years. But going into the 3rd year, you should see a decrease in these feelings. If not, I'd give you another year pass just in case, but its verging on extended grief. In the 3rd year I felt much, much better and didn't use such hard, black and white judgements for my friends. If they comaplined about their kids, I joined right in with them (I have others). If they made a faux pax, I could swallow and smile at them and know they didn't mean to stir up unpleasant feelings for me, and I still loved them and appreciated them. It got to the point, where all those things you outline didn't make me want to scream anymore. I sincerely hope you get to that point, and that should be your end goal. Because its not healthy to feel like this forever. And hon, you're not gonna have many friends if you tell them they can't even complain around you. :/

Just remember, its not a pissing contest. There's always going to be someone with a worse sob story than yourself (speaking to everyone reading this, too) so we need to try to be gentle with everyone and understand that hey, even though she still has her child, some days just stink raising kids. And she deserves to vent about it just as much as I deserve to vent about losing my son.

Anonymous said...

"-Complaining, of any sort."

But how come you're allowed to complain about all of this? Because you had a premature child? You don't think there are people who have lost children? Or had other crosses to bear?

I'm sorry for your troubles, but you are the self-absorbed one who doesn't know how good she's got it if you can't see this. And especially your 'in America' comment. Excellent healthcare, and your access to it, saved your son's life. There are a lot of people even IN America, who do not have that.

I understand your desire to educate people on 'what not to say'. Complaining about lack of sleep with a new baby, when you were struggling with a child in the NICU, for example, would have been insensitive. But to say that no-one is allowed to complain about anything, ever, makes me think you are losing perspective.

Michelle said...

I just want to throw out that she's allowed to complain to "anonymous" because it's her blog! That's what blogging is for. It lets bloggers deal with whatever emotions they are feeling. It's her blog and she can vent, complain, brag, celebrate, whatever if she wants to! You don't have to read it if you don't like, and the least you could do before criticizing someone else's personal space is to leave your comment under your name rather than "anonymous".

The Trousdell Five said...

Love it, love it, love it. I don't think there's really anything left to say to you about how wonderful this is because so many people before me have already said it. People need to be educated, and anyone in your (our) shoes GETS THIS.
ps - As per "anonymous" - who is anyone to say when you should be "over this"?! 2 years of grief/bitterness is ok but three is not?! Are you kidding me? I am 2+ years removed too and I don't know if those feelings are ever going to go away!

mouse said...

Hi,

I'm an English mummy of a 27 weeker and I have just discovered your blog which looks incredible. Me and scamp are in an earlier stage than your family and Jack and I feel that sitting down and reading your journey will be a godsend.
I haven't had time to really trawl through but I saw something about oral trauma, not eating and feeding clinic.....very interesting. I have a non-eater due to similar problems and suspect from what our dietician says that that is the next step. Will read with interest! x

Jessi said...

Hi Mouse! And welcome. So glad you found us! Please email me if you have any specific questions about feeding therapy. It can be so daunting!

Anonymous said...

This is an old post but I just have to say I cannot agree more. I cannot imagine that long in the nicu or having a baby as small as your's but my little guy is now 4 and was 26 weeks. It especially drives me nuts when they try to relate because their baby was 34 weeks or something of course it is hard when your baby is in the hospital but please have a little common sense and consider that the person you are talking to may have had their child in the hospital for months and that child with probably have lifelong difficulties.

~♥~ Mr. and Mrs. Bouchard ~♥~ said...

I just posted on my blog about this! Some people are so inconsiderate and downright RUDE!! I get this kind of stuff all the time. I am right there with you! :)

Anonymous said...

This is cool!

Anonymous said...

Thank you for the great post.

It helps people like me who have a tendency to say dumb things while thinking it is helpful.

On the flip side, I have some friends who simply say, "That's not helping." or "What I need right now is (fill in the blank)" or "That hurts."

I've learned a lot from them and hope I am getting better at helping, not hurting.

KristalN said...

This was so spot on, I can't say anything else......but keep writing. As a mother of a 24 weeker, Harper....you really couldn't say it better.....I enjoy following Jack's progress. What a beautiful boy!

Mindizzle said...

I developed preeclampsia at 21 weeks, and had to deliver my baby girl. I get a little annoyed when people try to relate by sayingsoo something like s, "oh my daughter mis carried her first"
People say very insensitive things to me "you can have others". Yes I can, but I really loved the one I lost.

And yes words are power, but they own those words, and you choose how you receive them. I am not defending what idiotic things people say that offend you. I think it is best that you don't reply to what people complain about. I like this post but it is a little hypocritical in my eyes.

Everyone goes through different experiences with birth. I don't know what it's like having a preemie, and the health issues thereafter. Just like you don't know what its like having to deliver your healthy baby because your body is shutting down, and you both can't live.

So you can get mad at people complaining, but just keep in mind that they perceive their own reality, just as you do. It is annoying to read what people say, about how hard their pregnancy was etc.

But, you choose how you let things like that affect you. If they need to complain, then that's fine. To them maybe it is hard.

Mindizzle said...

I think sometimes people do just need to say, "that's not helping". It's hard to say, but of things big us, say it! Or people never know they are offending you.

Jessi McGee said...

All of those are things I've heard. Also, family being insulted if you don't attend holiday parties if there is someone sick, or to just avoid the crowd. Commenting on my baby's funny breathing,I actually had someone tell me, who didn't know my daughters were preemies joke about how ugly preemies are. And being in the presence of someone gushing about how far ahead their child is developmentally. And so disturbing, someone cooing over how small my daughters were, when they were OBVIOUSLY abnormally small even for newborns.

Jessi McGee said...

P.S Most of these things really are harmless, but all of this should be helpful to read if you are around someone with a preemie. It is nice to get things off your chest, if you have no one to vent to.

Eat.Sleep.Play.Love said...
This comment has been removed by a blog administrator.
Ashley said...

I love this one. We are in the NICU now. So far I'm just dealing with an insensitive mother in law who wants us to bring our son out after he gets out to see her, her side of the family and a ton of children. She thinks we are making it up. I really hope we don't get the insensitive remarks you have got.

Anonymous said...

I want to preface this comment by saying that 6 years ago I watched my daughter die. I understand grief and yet I know I do not fully know what it is to watch a child suffer for long because she died quickly.
However, I wanted to comment about other parents complaining. I understand why it is frustrating that people complain about their normal kids, but not sitting with them in their parenting frustrations is the same as them not sitting with you in yours. I still complain about my kids. I don't have fun when my 1 year old is up screaming 2 hours in the middle of the night or doesn't sleep all night because of an ear infection or my 5 year old ends up in the hospital with breathing issues. And I complain sometimes and I want people to listen and be compassionate with me just like you want them to be compassionate with you.

Anonymous said...

I had my son at 24 weeks when i developed an infection in my uterus and they could not stop my contractions. I watched my son's journey for 7 weeks before it all became too much for his precious little body and we had to make a decision to give him some peace. He passed away in our arms. The best advice i can give anyone is remember what your Mum said "think about what you say before you say it" Appreciate the gifts you are blessed with, any pregnancy you experience (you are lucky you can fall pregnant), every kick that causes you discomfort (it means your baby is moving), every cuddle (many people experience loss without being able to hold their baby), every smile (your child knows you and knows how much you love them). Spare a thought for those who face everyday with challenges and praise them for being so strong. Bless you all and best luck for the future, what an inspirational Mum you are.

Jessi said...

That last comment was so sweet and wise for us all to hear. Thank you!

Anonymous said...

We have been in the NICU for 5 weeks with our 23-week miracle man. The hardest thing I've been hearing is that people know exactly what I'm going through because they had a 31-week preemie or some other week preemie. Even with a NICU experience, you don't know exactly how I feel when they staff suggests that we consider a DNR or suggests that we consider baptism in case things take a turn for the worse. You don't know how I feel watching my son being baptized inside an isolette instead of in a church with a gown and loving family around (I never thought this was important to me before Rory came). You don't know the ache I feel because I can't hold my baby. You don't know the constant fear I live in that I won't be able to bring our baby home. You don't know the anxiety I feel about his potential future health problems. You don't know how helpless I feel. And you don't know the depth of my love for this fragile, beautiful little boy that we waited for, for so long. Saying that you know exactly how I feel is flat out ridiculous.

Sorry for the vent/rant. Some days I feel like I can do this and other days I have no idea how I'll do this. If only there was a road map or a crystal ball or something. The uncertainty feels crippling some days.

I wish you and Jack all the best. You're right, he is beautiful. And you are an amazing writer and mother. You inspire me.

Amy

Jessi said...

Amy,

Thank you for sharing your thoughts here! It's because of mom's like you, that I wrote this post. Too many are quick to say things, when they haven't thought about the depth of a NICU journey for a micro preemie. All those emotions and scenarios are so very real. Thanks again for sharing. I wish you all the best as your little one continues his fight in the NICU and as you begin to find your way in this new role of NICU mom. Much love and prayers.

Alicia said...

I am a mother to a 30 week preemie, so I cannot relate to the micro preemie but did spend 6 weeks in the NICU with our son. We were very blessed to have a healthy baby who just needed time to grow and learn to eat but we still have to take extra precaution with him given how early he was. We get comments all the time, mostly from family, about why we don't bring him to family functions or asking if they can come see him at our house with their school aged kids in tow and when say no and explain why they gives us these looks and comments about him doing so well that we are being too overprotective and a little cold won't hurt him, this drives me crazy and makes me feel crazy as well. This, and other comments about his health, well being, and development are thing that I can generally shrug off or just ask that they not talk about it anymore to me directly. The one thing that bothers me more than anything is when people complain about thier pregnancies, we have a friend who is newly pregnant with morning sickness and every conversation we have is about how awful she feels I kept my thoughts to myself for a while but finally just told her that I would have given anything to have morning sickness with my miscarriages or a whole nine months of sickness if it meant carrying our son to term. She follows this up with, you just don't understand your pregnancy was so easy, you didn't have severe morning sickness. To which I replied, no I was super lucky not to have morning sickness, instead I was hospitalized several times for kidney issues, I had to watch everything I ate because of my diabetes, and oh yeah my blood pressure was at stroke level so to save my life and my sons they cut him out of me far too soon, but you're right my pregnancy was super easy, I'm so thankful. I love my son, but I would have loved to have a normal pregnany with a normal outcome, but life had other plans and we adapted and if others can't get on the same playing field then we will be ok on our own.

Julie said...

Yes, yes, yes, yes! I love this post. I have a 6 months old daughter who is also a micro preemie (25 weeker, 500 grams, 11 3/4 inches long). I have had almost all of those comments as well and they bother me each time. The worst probably was when a lady kept asking me over and over again if my baby was going to die. Ouch. The first time I had pictures of my daughter developed, the photo lab personnel started calling out to each other "oh, this is her! The mom with the sick baby!" when I picked them up. Apparently they had passed around her pictures with pity, which was most definitely not welcome. Thank you very much for this post! : )

Michelle said...

Wow! Thank you! I'm a mother of a 26 weeker who weighed 475grams. What people don't understand is we are already our own worst critics. We exhaust ourselves learning therapies, medications, and schedules. We've noticed all our children's 'quirks' long before you did and have already gone through the long list of things we did, should have done, could have done, and heaven forbid if we just had a little more energy could have done better. I love your list of things to say!

Connie said...

I hope that your precious Jack is doing well and that hopefully things have calmed down at least somewhat for you. As another medical mom (my son was not really a preemie, but has multiple organ system birth defects), I can totally agree with pretty much all of what you say. People can certainly say stupid things, even those that mean well, and the rest, well,they just don't count. One thing I have to disagree with is the desire to limit other people's complaints... I understand the urge, I felt it when at 8mo old my child needed ear tubes and I was listening to the other moms angst about it (after we had been through GI system surgery, urinary system surgery, spinal cord surgery, etc) while this barely even registered on my radar as real "surgery" so their complaints annoyed me... However, as someone further in the journey in one of my support groups pointed out to me, if I HAD been living a "normal" life, I would have been the same way. It wasn't the other moms' fault that our life wasn't "typical" so I really had no right to get mad at them. That said, if listening to people whine on Facebook is annoying to anyone, DO feel free to "hide" them from your newsfeed, the last thing we need some days is more aggravation!

Hang tough to all you medical moms!

(((HUGS)))

Aubrey The Feisty said...

hi! i gave birth to a 24 weeker october 20 of last year, and we spent 122 days in 2 different NICUs before getting to come home in february. i just stumbled upon your blog for the first time today and read your "what not to say" post...i wrote something eerily similar a month or 2 ago on my blog! the things that slip out of people's mouths are unbelievable. thanks for your blog--i hear a lot of myself in it. jack is gorgeous!

holdingtomorrow said...

Thank you for this great post. My daughter has autism, and we have gotten the strangest comments and questions as well. I had a friend that would come over and complain about her healthy, neurotypical kids. I had to "unfriend" her in real life, because I just couldn't handle her inability to have a clue about the fact that I was fighting every day for my daughter to even learn to say a few words, to have any sort of chance at life. Things are better for my daughter now, but I learned to stick with the people who get it, and who know the questions to ask. I'll be saying a prayer for you and Jack!

Kate Maund said...

wow i never realised the things people say and they are mean.One reason why i dont want to go to all those baby groups. im pregnant and dont complain because i know i have nothing to do so about there are parents like you who works their asses off to care for a child so achy feet is a trivial nothing. From what i've seen of your son on this page,he is handsome chap and if he isn't up to 'normal' standards then screw it everyone is unique and shouldn't have to conform. Your passion and love is clearly visible and frankly that is all that matters.

Tettelestai said...

I deleted my own comment because it didn't sound very encouraging, and that is not who I am.

I do pray that as a society, we will all learn by asking sincere questions, how to interact with each other with love, learning to empathize through shared understanding of experiences and honest question and answer moments.

patti said...

My son was born at 34 weeks then my niece was born 2 months later. Family would always say "well shes doing this why isn't he?, he is older" I hated hearing that. My son did everything at his time. Just like it was at his time that he wanted to enter this world. A child is a child no matter what. A child should be treated different for any reason.

patti said...

Shouldn't, not should.

Anonymous said...

I'm so sorry that people would dream of saying any of these things to you! You seem like you're a great mother and have a wonderful little baby

Jennifer Armbright said...

I can't tell you how many times I wanted to sock someone in the face for saying those things! My biggest pet peeve was people saying "she's going to be ok!".. Of course I know she is.. But that comment always makes me think people are trying to disregard the situation.. Ugh! I never knew that I could feel so angry. Also, people having normal pregnancies make me angry when they complain all the time.

Jane P. said...

We have "friends" whose son was born the same day as our son and also born "early" (1 month). Whenever we see each other they're always trying to tell us how scary they're NICU stay was, I always want to roll my eyes. Their son spent 1 1/2 days in the NICU and he got to leave with them! We stayed 63 days, there is no comparison. I usually end up saying something comforting like "Well, any amount of time in the NICU is scary..."
I also get extremely ticked off when a pregnant woman is complaining that she's tired of being pregnant and wants the baby out... I don't get it.

Tina Hayes said...

This is an awesome post. My first born was only 7 weeks early. the worst thing someone said to me that has stuck with me 7 years on is "what's it like not having your baby with you?" it also happened that I was discharged christmas eve. Christmas away from him was hard for lots of reasons, but this question really hurt.

Anonymous said...

Your son is beautiful!

Anonymous said...

I have come to the conclusion that some people are just plain ignorant or worse mean. I never had to suffer through the pain of having a preemie and all the issues that come along with it. I did however lose a child at 17 weeks due to extreme high blood pressure and have to delivery my little girl after being induced. I have been too far away from a friend as she delivered twins at 23 weeks and are still in the hospital 4 months later (hopefully coming home within the week). I previously worked with adults with developmental disabilities for 6 yrs and if anyone things there comments said in passing to a parent or child are dead wrong. I dealt many times with clients who after hearing people on buses calling their friends retarded in jest come home and fall apart because it brought back taunting from their childhood. I do not understand the need to constantly compare one persons gifts or draw backs. These are our children who are perfect in every way because they are ours. I am currently 43 and expecting my child in about three weeks, my fiancé and I have beat a lot of odds to get to this point, our OB did not think I would carry her this long, she is thrilled and so are we. The sad thing is the one thing that sticks out about this pregnancy is a comment made by my soon to be step son's maternal grandmother. She told him that this child was not going to be normal, she will definitely have problems because I am so old....
Yep, people can be ignorant and mean.
Sorry you deal with people who do not think before they speak.

BrennaP10 said...

We are brand new parents to a beautiful sweet micropreemie, Prudence (25 weeks 2 days and was born way before the steroids could go into effect). So we are just now getting into the thick of things.

I have to say that I agree whole heartedly so far with everything you say! The other day someone said they would "never want to trade places with me." I didn't know what to say. I love my child. She decided to come early. No I didn't do anything wrong. And even though I don't wish any baby any where to be born early, I certainly feel blessed to have my beautiful child. And almost daily I have to explain the difference between preemie and micropreemie. I think a lot of people think I just made up the term to make her seem smaller.

Anyways, I just want to say thank you for your post. We will be praying for Jack and the general publics knowledge of micropreemies to be heightened.

Anonymous said...

Praying for your family <3

Lucas, Em, Landon, and Lucy said...
This comment has been removed by the author.
Lucas, Em, Landon, and Lucy said...

I just saw your blog on this subject & haven't read through all the the comments. One big one that got to me was " WHEN WILL SHE GET TO COME HOME!?!?". Ya, I had no clue, and neither did anyone else. We only spent 53 days, but it was a long 53 days. You can't forget family that says ( in response to what guidelines for visiting the baby are when she comes home) 'Oh, they tried to tell us that too, but we didn't listen". When my baby was born at 29 weeks, even though she is at home & 37 weeks now, she does NOT have the lungs of a term baby. Your term babies were not told the same things that we were, and don't try to compare it just so you can say we are over protective. When Mommy almost passes away, and when you don't know what will happen to your baby, you will do EVERYTHING you can to make sure she stays healthy. Some people just don't get it, and they never will.

Anonymous said...

Thank you for posting this! I'm a preemie mom too. My daughter was born at 26 weeks (1lb 12oz). I often get these types of questions too and it is frustrating and annoying.

Anonymous said...

I wish I had found your post sooner! My son was born on 3/29/13 at 29 weeks. I had a meltdown the other night after reading two friends posts on Facebook about how miserable they were and "So ready to have this pregnancy over with" - each lady had two weeks left until her due date. My son is doing great but the emotions are still there from being in the NICU. I hope your son is doing well. Thank you for sharing.

Mims said...

At a loss for words. My grandson is a micro preemie, born 10-29-2013. My daughter lives 4 hours away. Needless to say nurse grandma was extremely distraught. He survived so many procedures and was determined to prove everyone wrong. Your words have given me new meaningful insight. Having 2 older grand children, one born 6 months before his cousin, I have been extremely cautious about what we talk about. Most of the time I am using comparisons to help her understand her son is doing great. She understands he is on his owm timeline, but forgets all children follow their own timeline. I am going to send her a link to her web site. You sound so much alike it is uncanny, empathetic, caring, loving, forgiving appreciative and extremely perceptive. You have such a precious gift " Jack"

Anonymous said...

Lighten up, for fuck's sake! Your kid is ALIVE

Chris & Krysta McRae said...

A flipin' men (to the post not the above commenter) I have a 27wkr (1lb4oz) he is now 4.. He is also the WORLD'S oldest surviving micro with his type of heart condition.
175 days in the NICU.
I get sooooo many of these constantly.. Most days I'm polite, somedays you just want to kick someone inthe face.
We were actually able to avoid the NICU head (thanks to an awesome nurse) and tube feeding (barely).
For the "OMG I feel so horrible preg, I'm ready to get this kid out now". FB posts... I always post "it's better than being in the NICU" and just leave it at that. With my last pregnancy(termie after Micro!) and this one (27w!) I get the "I bet your so tired being pregnant". Nope not at all. You should see the shock that brings!
Thank you for the post, absolutely love it! Some days we just have to scream :)

Janine said...

Thank you so much for posting this blog! My daughter was born in February at 27 weeks and was 1lb 7oz. Spent 91 days in the NICU. She also has ROP and CLD. We are fearing the winter months with RSV but praying there's no hospitalizations.
I've been going through some of these issues and it's so nice to know it's not just me that feels this way. We have gone through so much like a lot of parents with preemies and I don't think people realize the emotional roller coaster we have been put through. Everyone on the outside needs to thunk before speaking because they obviously haven't been in our shoes. Thank you for this amazing blog and all of your words, it's helping me through the difficult times. Thoughts and prayers are with you and your family. By the way, jack is so beautiful!

Tarquin Harvey said...

Thanks for posting this. Many of us whom haven't experienced a friend, relative or anyone known to them having a premature baby can make it quite tricky when it suddenly does happen. I can totally understand your frustration, however, I am certain that people will not be asking those questions because they want to upset or hurt you. I would have asked the same, and not because of a lack of empathy, but rather, a lack of experience. I think that you are in prime position to teach others how to respond to someone who has had a premature baby. Not everyone is going to automatically know how a premmie baby matures, and the vast differences between a prem and full term baby, and their development. Bless your little boy, what a gift from God he is :)

Anonymous said...

I understand where you are coming from. However many of us fellow parents of preemies need to understand that other people do struggle, and if we are quick to judge their situation without first really getting to know them, then we are just as judgmental as they are. Never judge a book by it's cover, even if the cover looks familiar.

Kat said...

Can completely relate to all this right now... My son emitt was born august 7 at 28 weeks.. And is still in the Nicu.. I was on bed rest for most of my pregnancy!! I have lost a lot of friend over having emitt due to them being rude about him and I, I have giving up my job because of my boss( was a friend) telling customers I was faking all the problems with me pregnancy and once I had emitt she then told ppl in our small town that me or my husband shouldn't be excited because he's probably not coming home! Yes we have had our ups and downs with him and we did almost lose him once but he's is strong and healthy! Some ppl just don't understand the stress and the road that you go down when you have a premmie baby.. I have never been so proud of anything I have done in life and I get to watch him smile everyday at me!! Now when ppl hear that my son is still in the hospital and the frist thing they say is" I'm sorry" I always say back to the oh sorry for what? The fact that your comment is rude or just sorry for not asking how is emitt doing?

Thanks you for writing your blog.. I hope ppl read this and educate them selfs on the road pm moms and dads travel on

Anonymous said...

My baby is a preemie and in the NICU now. What irritates me the most is when people ask if I'm breast feeding or not. It's no body's business!

Sarah said...

Thank you for posting this! I did not have a micro preemie; my son was born at 32 weeks and 6.1 lbs. When he was born at that size I got asked (more than once by the same freaking people) "why can't he come home? He is 6.1 lbs!" He was on a ventilator, being tube fed, unable to keep his body temp up, had his heart stop twice and had surgery due to bowel obstruction. We are fortunate that his only lasting problems seem to be asthma and digestive issues. I can't imagine if he were born earlier! I also made my grandmother leave the hospital after she asked me multiple times what I did to go into labor so early and maybe I just had my dates mixed up and he wasn't actually premature. SMH :(

Malou said...

Amen to that!
Hugs from another preemie mom, from across the globe :) <3

Daniela said...

Thank you so much for this post. Nice to know I'm not the only one that thinks these things are inappropriate and I'm not just being overly sensitive. I had my daughter June 3,2014 she was born at 27 weeks and as if this experience isn't overwhelming enough you still get comments like this from ignorant people. I have experienced every single one of these statements and they are very hurtful and at that irritating. Once again thanks for sharing this, I love it. Bless you and your beautiful family.

Anonymous said...

You sound like a total cunt. Most people don't really care how your special snowflake is doing. Especially people who don't have children. They're just trying to be nice and friendly. If I knew you I would totally do these things just to piss you off.