“Get over it”, “Just Fine”, “Normal”

I recently saw an exchange on Facebook where a preemie mom was posting facts about prematurity in support of Prematurity Awareness Month.  This particular post was around the cost of healthcare for premature children and then at the end, she posted how much money her own daughter’s medical costs have been so far.  Someone responded, “Money is nothing, be happy she’s alive”.

I have to give the original poster credit.  She nicely replied that she is, of course, happy her daughter is alive but she also felt it was important to bring awareness to the magnitude of the problem that prematurity is for all of us.  The response back was something like, “I was just trying to point out the positive :-)”

It wasn’t my post to comment on and I don’t know the circumstances of the commenter or the relationship between the two women, so I stayed quiet.  Maybe it was the, seemingly, passive aggressive use of the :-), but that comment made my blood boil.

In this blog space of mine, I do want to address my interpretation of that exchange because I think many of us preemie families have the perception that the rest of the world just wants us to “get over it”.  Once the baby is out of the hospital, and everything is “just fine” the family and the world is supposed to move on and be “normal” again.

This vent/response is for the moms and dads that are hurt every time someone makes them feel that way.

No, I’m not over “it” and here’s why;  “IT” is not over!  My days revolve around “it”.  Between tube feedings and oral feedings, I work with my son on feeding for 4-5 hours a day.   When I’m not working on feeding, I’m scheduling appointments… pulmonary, nephrology, genetics, ophthalmology, audiology, physical therapy, occupational therapy, neonatology, allergist, pediatrician and soon, we’ll be adding in speech therapy.

 

Every cold and every sniffle sends me into anxiety.  I instantly start thinking about what plans I am going to have to cancel and what is going to be impacted if we go back into the hospital.  And by hospital, I often mean the Pediatric Intensive Care Unit.  Nineteen months later and I still worry if he is going to be able to breathe on his own when he’s sick.  Nineteen months later and I’m still lugging around oxygen tanks and monitors and tripping over cords because he needs breathing support.

 

Yes, he is alive and I am so thankful for that.  However, I’m not sure which parts of “Medically Fragile” and “Failure to Thrive” fall into the “just fine” category.  The fact is Owen is better than he was and, in many ways, exceeding expectations, but there is a long way to go to get to “just fine”.

 

And then there is the most hated word of all.  “Normal”.  I’m not 100% sure what “normal” means, but I do know Owen’s course isn’t it.  He’s not had a typical course and so far, his outcomes are not that of a typical child his age.  He is different and it’s my job to prepare him to navigate these differences.

 

So far, I really think most people understand the Owen piece. However, what onlookers have a harder time understanding is why the rest of us aren’t our “normal” selves anymore.  Let me just put it out there really, really simply.  I will NEVER be the same person I was before Owen was born.  95% of the ways that I have changed are for the better.  I’m a more balanced, empathetic, appreciative and kind person.  The other 5% are the memories of fear, helplessness and devastation of spending 181 days in a place where babies – very real babies, not just babies I’ve read about in the newspaper, friends’ babies and nearly my baby – die.  You see, in my old “normal” world, babies didn’t die.  In my new world, I think about those that were lost every day.  I’m no longer naive to the true pain that is in the world.  I’ve felt it and the scars still ache.  I’m prepared for them to always ache.

 

So yes, I have changed and I am moving forward from where I was, but I will not forget.  I won’t forget for myself, or my family, because with the pain, came so many wonderful things.  I also won’t forget because there are new families going through it today and more families will go through it tomorrow.  When it seems like I’m dwelling on the negative, please keep in mind that it’s not about being negative and not being able to move forward.  Prematurity awareness is about reality.  It’s the reality for 12% of births!  Sharing knowledge is not being negative.  It’s about wanting to do something – anything – to help others never have to feel it.

Ahh, that felt good to get off my chest.  What do you have to get off your chest today?

Click to pin on Pinterest

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

109 thoughts on ““Get over it”, “Just Fine”, “Normal”

  1. Aghh!! For the past 2 years I have really struggled with this. I assume that most people want us to be “over it” because Jack is so cute and looks “fine” and he seems “normal.” I’ve said it a million times: “Yes, Jack is adorable. But his lungs are NOT!” I’ve had family & friends tell me that they are/were worried for me because I was obsessed with prematurity! I was so hurt, but now understand that they have not walked this path and are uncomfortable hearing about anything that isn’t “rainbows & butterflies.” It’s quite possible that Jack will be “ok” or “normal” in the future, but his start and my beginning as a mother were anything but normal and I have no other point of view to base my anxieties and fears upon. I was and still am so frustrated as to the lack of awareness among “regular” folks and the medical profession. I was told about gestational diabetes, pre-term labor, etc…but NO ONE once mentioned preeclampsia (the cause of Jack’s early arrival) or the devastating effects of prematurity. I will continue to tell his story and mine…I will never downplay or diminish what happened to our family…no matter who it makes uncomfortable.
    http://www.jackryansjourney.blogspot.com/

    • Joel, I think when I pin this post my description will be, “Papa Joel said, ‘Ooooohhhh weeee’ after reading this post. True Story.

  2. Great post! I don’t think people understand that preemies don’t stop being preemies when they walk out the NICU door. Jackson is three and we are still dealing with some of the same stuff like watching for shunt malfunction, working on eating and almost five days of therapy a week. Thanks for posting. I think we will really need that drink next Wednesday! 😉

  3. What an amazing post. I’m the mama of 2 preemies…one little boy in heaven and one home with us now and no matter how “fine” my child may seem, he is not done being a preemie. Thank you for this post…you have a new follower!

    • Hi Amanda, Nice to meet you. Nope, never done being a preemie and no angel is ever forgotten. I look forward to getting to know you and can’t wait to see what you’re suggesting to read next.

  4. Been struggling with this the past 2 years. My son looks “fine” and I should probably “get over it,” except that getting over it would downplay or diminish all that he (and we) have been through. I’ve actually been told that my family & friends were worried about me because I was “obsessed” with prematurity. No one really wants to hear the reality…they just think everything is “normal” now because he is so cute & happy. I’ve said it a million times: “Yes, Jack is cute, but his lungs are NOT!” And putting an NG tube down his nose into his stomach was not cute either! It may not be the “normal” (i.e. filled with positivity and rainbows and butterflies), but it is OUR journey . Jack’s beginning was not ideal by any means and my introduction to motherhood was frightening at best. But, it’s the only perspective I have and it’s our reality (like you said)…and I will NOT stop talking about his premature birth just to make others comfortable. I so wish someone would have mentioned preeclampsia and prematurity to me. So, yes, I may be “obsessed” because all I want to do since Jack was born (@ 28 weeks) is educate myself and everyone I know about prematurity and its impact on babies and families. When Jack turned 1, I definitely lost it for awhile and was a little worried for myself, but I also knew that everything I was feeling and experiencing was completely normal because I had found a few preemie mom bloggers…like you! Thanks for all you express (that most of us want to say but haven’t) and thanks for educating everyone too!

    • Heather, you have the best Preemie Pin Board that I know. Thank you for sharing a little about your story and when you’re feeling like you’re the only one that’s being told their obsessed, come back to this post because it seems a lot of parents feel the same way.

    • Thanks Sarah, I think this post has been bottled up in me for a while, but based on the response, I’m so glad I put it out there.

  5. Oh my gosh! Well said, I’ll be sharing your post! I only pray my family will read your post so they can try to understand why I will not “just forget” and ” just get over it”.

  6. Wonderful post, thank you! It’s so nice when someone can put your thoughts into something that makes so much sense. 🙂 Our daughters were born at 24+4 weeks. They are doing extremely well now at 2.5 years old, but it doesn’t mean that the journey is over. You are so correct when you say that your life totally changes when you see babies die or almost die. I will never get over my obsession with washing hands or the way I cringe when someone next to me starts coughing. We are all forever changed, no matter how well our babies are doing.

  7. Hmmm, the “passive aggressive use of :)”…I like that one Tatum!! As usual, this post hits home in many ways. One of my common struggles is knowing what to say when people ask how Drew is doing. He’s doing amazing but there will always be things “we’re working on”. Are people being polite or really want to know?

    • As you know, “passive aggressive” (oh, I’m sorry, it’s called MN “nice”) is part of the MN culture, we can spot passive aggressive behavior from a mile away.

      I struggle with that question too. Deep thoughts for a bottle of wine when we are finally able to meet.

    • I always struggle with that question, “How are they?” Do you really want to hear, because it will take awhile. So most of the time I just say, “Fine.” But it doesn’t cover what is actually going on because the truth would be confusing and take so long to tell.

      • Stacy, I’ve been wanting to check up on you and see how having your house full is going? Thanks for the note and insight, yes, it is always hard to know how to answer such a simple question sometimes, isn’t it?

  8. This is beautiful! If I could, I would print this and han it out to ALL family members and friends. They all think our days are “normal”. When my son Owen, now 3, goes into the hospital, people often say to me, “at least you don’t live there anymore. Be thankful”. I guess because we have been through the worst, we are not aloud to be worried about the “little” things. They don’t understand how it feels to have a medical supply room in your house an how much time it truly takes to take care of a medically fragile child. They don’t understand what’s its like to have the very vivid memories we have of events that happened in the NICU that will probably never go away. Thank you for your words. I love knowing that there is someone out there that truly does understand.

    • Kathleen, check out the comments my Nurse Amy just a little further down. Maybe those would be good words to share with your family. And definitely know, you’re not alone. I think it’s why the preemie community is so close – we get each other and everyone needs that.

  9. Thank you for this post. I think the hardest is when you hear it from a spouse or family member, but it hurts every time. My son’s journey has been so much less traumatic than many others that I do feel guilty when I let things get the best of me.

    • Having had both ends of the spectrum of prematurity, I can tell you the hurt is just as vivid regardless of the trauma level. Not getting what you expected…and for your child…that’s a tough pill to swallow.

  10. I saw this on LeaAnna’s facebook (who posted above). I am a nurse and we are not even allowed to chart using the word “normal” because there is no such thing. Everyone has their own issues, experiences, and problems. There is no way for every human to measure up to some standard “normal”. I think those who have experienced the impact of prematurity should hold onto that experience and educate everyone they can. It is a part of life. It is a part of who you and your child are. To move on would be diminishing the life of your child. Personally, I applaud you, LeaAnna, and all the others out there devoted to fighting everyday for their children.

    • Thank you Amy!! I often wonder if people get tired of me posting preemie stuff on facebook, but then I think it’s raising awareness! It’s part of me and who I am! I also agree with Laura, sometimes I feel guilty because I know several people have it much worse, however no matter how long your NICU journey, it’s still traumatic! My twins were born at 30 weeks weighing 2lbs each and we spent 8 weeks in the NICU. It was traumatic! And we deal with it every day, with therapy and eating issues, the fact that my daughters were premature will never change!

      • No, it won’t change. They will deal with prematurity all their lives. No one complains when a parent of a child with cancer tries to raise awareness of childhood cancer. It’s the same concept. It’s something you and your child have to deal with for a lifetime. What’s worse is people don’t realize the impact of prematurity like they do for cancer or other illnesses/disabilities. You should be spreading the word. It needs to be brought to peoples’ attention that it’s not a week or month long problem, it’s a lifetime issue.

  11. Tatum –

    You are making a major contribution of understanding life with a preemie to all of us who had no clue before Owen came into our lives, through your blog. We appreciate and admire that you share your life with the world and are grateful for your role in opening a dialogue with all those who share their experience with you and Kyle. Keep your story coming and we will continue reading!

    • Thank you for continuing to follow, Lori. Sometimes I wonder how many of the friends and family are still reading since the content has shifted from the caringbridge to blog transition. I love hearing that you are.

  12. Tatum,

    The other night, I was laying in bed, trying very hard to not think about the fact that I was wide awake and had to get up for work in about three hours, and I ran across your hero of the month post that featured Kellen. As usual, I was moved almost to tears by your writing. Through your Caring Bridge posts and your blog, I feel like I have gotten to know you and your family well over the last year even though we haven’t seen each other since high school graduation.

    As I was laying there, given that it was late and I was dead tired and not thinking straight, I wanted to call you and ask if I could be a guest blogger on your site because somebody needs to write a hero of the month post about you. Of course you and Kyle and Kellen have changed over the last year. I see the three of you AND Owen as some of the most courageous people I “know”. But you, you have been amazing. You have grown into such a beautiful, strong, intelligent woman who faces adversity with her eyes wide open. You never backed down. You fought so hard for Owen – to make sure he had the best medical care that was available. I have no idea how you managed to spend so much time in the hospital taking care of Owen, being Kellen’s mom, working, being Kyle’s wife and still managed to learn as much as you could about every medical issue Owen faced so you could make the best decisions for him.

    I watched as you wrestled with so many difficult personal decisions – taking a leave of absence from a career you obviously love, finding new homes for your pets, whether or not to go on a girls weekend with your friends. . . Every decision you made was for Owen and for your family.

    I can’t imagine your grief or the amount of tears you cried in silence or in private, yet mostly, in your blog, you focus on the good things – how much Owen is growing and learning and surpassing the expectations of all of his doctors and therapists. I was so excited to read about him learning to scoot and stand and “eat” salty foods, how “quickly” he recovered from his last cold.

    I can by no means fully understand or grasp all that you have been through in the last eighteen months, but I want you to know that I think you truly are a hero. Owen has made so much progress, grown so much, and learned so much because you are his champion.

    I wrote most of this as I was waiting to get on a flight to DC to “visit” my daughter. After I wrote it, I almost shut my iPad down and let my comment delete, but something stopped me. I admit, I felt a little cheesy and maybe a little mushy, so I guess awkward is the word I’m looking for here – this isn’t really isn’t something I do often.

    I flew home today in my uniform – the one I wear everyday to what is basically a 9 – 5 job that pays quite well – and so many people thanked me, the flight attendant offered me free drinks, and one woman tried to hug me. I thought about that when i opened my ipad tonight and this was what popped up. I don’t deserve that hero status. No one sees the things you have done, are doing, and continue to do for your sons; you are the one who deserves the free drinks on the plane not me!

    But still, I wrestled with my decision to hit send. So I read it to Kayla – she has been following Owen’s story through my verbal updates – and she was wiping her eyes when I was done. There it is: I’m hitting send. If you are ever in the Atlanta area, let me know. I’ll buy you a drink or two.

    • I agree with this comment with all my heart! I didn’t know the before Owen version of you, Tatum, but from the day you introduced yourself as ours sons struggled to survive next to each other, you have been my hero.

    • Jennifer,

      I’m going to need a drink or 6 after reading that. Thank you. I can’t begin to express how overwhelming, in a good way, your note was to get. It’s normally Wednesday nights, while writing the Thursday Therapy post, that I cry. I truly believe that any mom would (and do) do the same thing – it’s proven by all the preemie families that follow this little blog – even still, having someone list it all out does remind me that some days it’s okay to write a feisty post like today because, I (and we) have given a lot and do deserve to get a little pissed off now and then. Our story is like so many others, I’m just one of the voices because – like when we were kids – I still can’t shut up.

      Thank you, thank you, thank you for having the courage to post this because it really made my day.

      As for you, and the drinks and attempted hugs that you get. They are well deserved. You are part of what keeps us all safer and just like I represent Preemie families who have been through hell – you represent our country and the men and women who fight for it. We don’t get a choice in our battle. You, and your colleagues did and you chose to sacrifice for all of us. You are a hero. Don’t forget that.

      T

    • Jennifer…
      I don’t know you or Tatum and I’m weeping… Tatum made me feel sane in her original post. And them you made me feel proud. Together, from the inside I now feel validated, appreciated and respected by your words.

      My son was a 25-weeker… And just as you both said- incredibly improved BUT still battling. And NO ONE in my life acknowledges it. It has been so heart-breaking becoming “the problem” instead of being recognized as a hero–someone courageous enough to LOVE/LIVE like this… Worst of all, until today, I’d struggled to acknowledge it myself– hence the tears. It’s so mean to do to myself. Thank you greatly for helping me stop!

      I wish I could say more, but I must let the tears settle. :-).

      Lovingly and gratefully Yours,
      Tamara

      • Thank you, Tamara for your beautiful words. As I said previously, you are not alone, many of us are here with you, please reach out when you need someone who understands.

      • Thank you, Tamara for your beautiful words. As I said previously, you are not alone, many of us are here with you, please reach out when you need someone who understands.

  13. Pingback: A couple things… | Quiet Light Foundation

  14. Tatum, reading your post was like hearing myself nearly 10 yrs ago….i would have loved to hand this post out to all those who looked at me with those “arent you over it yet” looks – I have now for the past 7yrs run Australian charity the Lifes Little Treasures Foundation http://www.lifeslittletreasures.org.au. Who’s main aim is to provide support, friendship, assistance for families of premature babies and information that will enable them to become their childs advoctae. On Nov 17th we will be celebrating “World Prematurity Day” with many other groups around the world to help spread awareness.

    • Shusannah, I’m so happy that you found a way to give back after what you’ve learned through your own journey as a preemie parent. Thank you for your commitment to helping those behind you. I look forward to celebrating World Prematurity Day with you.

  15. Thank you for posting this. I truly understand the feeling. We had a NICU stay of 5 1/2 months and everyone thinks that I am dwelling on the negative when I tell him that I won’t take him out until after April because of RSV.

  16. I struggle with this too. My son was in the NICU a short amount of time but has a speech disorder due, in part, to his premature birth. He will be four soon and this time of year is especially hard. I have had people ask when they will “get over” the NICU or when their friend will be “back to normal.” My answer is “never but it will likely get easier/different as time goes on and you process the whole experience.” There’s a “new normal” and a “new world” and you will be a different person, all of which is okay.

  17. I can sum up my response to your post with: Yes! Yes! Yes! and of course Yes! and by then, I was 1/4 of the way through your post. #justraisinmyhand Thank you for this post. Every #preeme parent relates.

  18. Wow Tatum, what an amazing post!! Thank you for letting us into your world and spreading awarness of what life is like with a premature baby. Another great example of why we should never judge anyone until we are in their shoes (for that original post you referred to).

    I love how open and honest you are with your posts. I admire you deeply!

  19. I have thought this same thing a thousand times! This journey will never be over for my family and I so appreciate how while reading this I instantaneously felt less alone. Thank you!

  20. You took the words right out of my mouth. I constantly battle the mentality of others that just don’t seem to get that my daughter’s life started out so rough and will likely never be that of other kids her same age.

    Thank you for putting down into words the exact thoughts I have had for the last 4 and a half years.

  21. It is unfortunate that some people never realize the day to day reality of raising a preemie. I have been blessed by my little miracle every single day for the past 7 years and 2 days. He is not “normal”, he is himself – mostly healthy (finally), happy, and inquisitive – and I wouldn’t change a single hair on his head. It has not always been an easy ride, but it has always been a blessed one. I am thankful that after 7 years of doctors’ visits, specialists, various surgeries and procedures, breathing treatments, etc., that we are down to one Occupational Therapist and one counselor. I pray that one day parents of term babies will understand the tremendous emotional, physical, financial, and sometimes spiritual toll that our little miracles have on us. I pray for all of those working with our preemies, that God would guide their hands as they work to help and heal our babies. I pray for all of the preemies themselves that they will develop and grow to be as “normal” as God has planned. Finally, I pray for all parents of preemies; I pray that you have the continued strength that you need, the peace in knowing that you are an awesome parent, and that you can watch your child grow older, hopefully healthier, and become the person that he or she is suppose to be.

  22. Pingback: A Crazy Filled Week | Ain't No Roller Coaster

  23. Thank you so much for this post! It seems I’ve read it a few days late, but I really needed to hear it tonight. It was a day filled with runny noses and coughs (oh no- is it RSV?!?), and Doctor visits, and trying to get my little man to.eat, so we can get enough calories in him- even though he’s so stuffed up he can barely nurse or take a bottle. Then we finally get home, RSV-free! And the phone rings, and the inevitable barrage of comments and questions from the in-laws. Some examples: “You know, you don’t need to run to the doctor over every little sniffle the boy has”, “When our kids were babies, there was none of this RSV, paranoia crap-it was just called a cold!!”, and my favorite, “Babies need to get sick every once in awhile-it builds up their immunity and strengthens their lungs”. That would usually be time I go into all the information about antibodies, and preemies missing out on the last months of lung development, and trying to explain that his lungs are half the size of a full term baby. HALF!! He struggles for breath with just a “normal” cold, with RSV there will be hospitals and oxygen involved. But I’ve said this to them before. Many, many, times. So instead I calmly say, “You guys have had your babies to raise. Luckily they were all full term and healthy. However, our son wasn’t so lucky. And we will hold him as much as we want, take him to the doctor as much as we want, avoid public places and family functions as much as we see fit, and most of all-protect him everyday of his life. We are his only voice”. That should stop their comments… Well, at least for a day or two.

    • Nikki, I’m sorry to hear of your day’s events. Those comments are the worst. If you haven’t seen my post about our experiences with RSV, I’d suggest sending it to them. I know you know this, but you’re concerns are absolutely valid and you deserve their support. If you don’t get it – I’m always here to listen to a vent when needed. Wishing you healthy thoughts for your son!

      • Thank you soooo much!! I love there’s a place for all of us to go to support and listen to each other. Everyone has been awesome!!

  24. This touched me in so many ways. On my boys’ first birthday I wrote them a letter. For me the key point – never let yourself be constrained by normal. (http://www.streamdoubletrouble.com/2011/05/27/an-open-letter-to-my-sons-on-their-first-birthday/)

    We are off oxygen. We look “fine.” But prematurity is a part of us now. It is the new “normal.” Some days I wish that ignorant bliss on any new mother glowing with a swelling belly. But I also truly appreciate the miracle of life now. And the stunning beauty of a simple breath.

  25. Loved what you wrote, so very true!!!
    My little girl was born a 25 weeker, required a tracheostomy at 5 months and was finally discharged after 8 months…And we are oh so grateful and happy to have her home, but it is not just fine yet…we still have a long road ahead.
    Thank you for sharing this!!!
    I started writing my little girl’s story not too long ago, if you’d like to ever read it at http://www.malenalola.com I’d love to hear your thoughts.

    Thank you again!!!

  26. Thank you for your post, my micro preemie (23weeks) turned 5 a few weeks ago. He is a triplet and we lost his siblings. Birthdays are hard, we celebrate the miricale that is our son but we also mourn our lose. We will never Get over it, or be Normal again. Even at five long after the feeding tube and Ostomy are gone, he’s still a micro preemie. We even struggle getting family to understand. I dread Christmas and my mother in law two years ago my 3 year old got inline skates, last year as a 4 year old he got a pogo stick. Leo can’t climb stairs on his own and has trouble running with out falling. So these gifts collect dust. Thank you for speaking up.

    • Thank you for sharing your the story of Leo and his siblings. I really hope that he receives gifts that he can wear out this year. Wishing you a better holiday season and for Leo’s continued success.

  27. I so understand how you feel… you never fully get over it, you simply learn to live with it and like you said, celebrate the miracles that are our little micro preemies.
    It’s hard when our own families don’t quite understand our world, and that no matter how normal they may want it to be, it is not. It is indeed unique and even thought we are grateful for it every single day, we also bear the scars of what we have been through, of watching our little miracles suffer and struggle, of loss.
    Thank you for being a voice to relate to, big hug!

  28. This is an excellent post! My daughter, a 23 wker, is now 6 and still not “normal” G-tube, therapy 2 a wk, apraxia, lots of preemie issues. I have reposted on my FB page and hope people read and learn a little bit. My twins were born 2 yrs ago ag 36 wks b/c of knowledge and the MOD! Thanks for your “vent!”

    • Thank you for sharing the post and your story, Blake. It’s been overwhelming to see all the support around this post. I’m glad that so many of us could take comfort in knowing we aren’t the only ones who feel the way we do.

  29. My daughter was born in March, she is still in the hospital. My good friend from high school came to visit us for the first time this past weekend. She exclaimed at least I have a healthy baby. What! What part of 8 months in the hospital, high o2 support, and only ever been tube feed did she not understand? I was worried I was being over sensitive, thank you for this post.

    • Cami, I’d definitely say you were not being over sensitive. At ALL! However, I think, I understand where that apprehension was coming from – it is hard to not be empathetic to the fact that, a lot of times when people say things that hurt, the wrong words are coming from a place of good intentions. The NICU is a scary place and makes visitors uncomfortable and they often end up saying really unintelligent things. I’m no Dear Abby, but I do think it’s okay to say something like, “she’s definitely come a long way, but an Intensive Care Unit is still the best place for her – she’s a sick little girl”. Sending you hugs and hopes that your daughter comes off the high flow and can make her way home soon. If you want to see how a little who spent 9.5 months in the NICU is doing 14 months after being home, look at Friday’s post – http://aintnorollercoaster.com/comfort-in-other-preemie-families/

  30. I know your more then likely super busy but, after reading this, it really hits home. The problem I have now is, that when everything happened with my daughter, I didn’t want to talk about it. I would say as little as I could get away with. Around the time she turned 6 months, I now feel up to talking about it, or atleast I don’t start crying when I do, and everyone dismisses me. I always get the “Well, she is fine now,” or something of that nature. Granted, she is doing better now, but, nothing is this “fine” everyone seems to wanted to call it. I got diagnosed with PTSD, I work as a cashier, and the beeping random machinery makes gives me flash backs and then the nightmares. My daughter looks fine, however thats because of doctor’s appointments, keeping her on lockdown during cold season, etc. When I tell someone about the issues, or what happened, or about PTSD, and they dismiss me with a “she is fine” type of answer, I normally get annoyed with the person. I’m never rude, but, its like, it hurts when all you want is someone to listen.

    My question for you is, will I ever get to a point where it won’t bother me as much?

    • Ashleigh, You will get there. Partly, I think the pain lessens. But, it also takes work.

      I’m going to refer you to a great post on Life With Jack, because truth is, I think Jessi’s closer to “there” than I am. http://www.lifewithjack.com/2012/08/how-do-you-get-there.html

      For me, writing is my release. As a kid, I always kept a personal journal and then I didn’t write as much once I got into my mid 20’s. When Owen was born, I found so much release in caringbridge. At first, I only wrote about the facts. “today Owen is…” and that really helped me understand what was going on with Owen. As I slowly came more to terms with the facts, then I slowly started toying with the emotional components of the journey. I cry during writing many, many posts. This is really, really hard stuff and you shouldn’t expect yourself to suddenly be over it. We didn’t get what we had expected and our babies didn’t get what they deserved and the hardest is knowing that for many of us, our first lesson in parenthood, is we can’t always give our child what they deserve. That’s heavy!!!

      You mentioned you’ve been diagnosed with PTSD. It’s real. I have a few people who are very close to me who battle PTSD. I saw a quote recently that was something like, “when you learn someone has a mental illness, remove the the word mental and just know, they are ill” If you aren’t, please see a counselor regularly. I’ve heard others say costs are too high for a counselor, but there are free resources – if you need help finding those, send me an email and I will help with a search.

      The final thing that I want to say to you is that if you feel like your support group isn’t being supportive to you, seek out others. Try your NICU to see if there might be other graduate families willing to meet you. Many have mentor programs. Or, try Life After NICU and see if there are other families in your area that are willing to meet. I’m always here for virtual support, but real life people are important too.

      Sending you hugs, Ashleigh. You are not alone.

      • Thanks for your reply. I have been seeing a counselor regularly, and it has been helping to have someone listen. I didn’t see one at first because, I guess I felt kinda guilty. I had the mindset that I shouldn’t feel this way, that because she is alive I should just be happy, but, as we both know, its not as black and white as that. I have been looking into finding more real life support, my NICU has a few things here and there but, they are in a town about an hour or so away, so its a bit hard to get to. However, I found out the other day at work that one of the mothers from my NICU that’s son was across from rayven’s room lives in my town, which she told me but, seems I forgot. She and I exchanged numbers, so I am hoping to have something there. Its easy to talk to people who have gone through the NICU, thats why I was so happy to find your blog and the Kimmel’s. Its nice to not feel so, alone I guess. Most of the people I am around don’t really seem to get it.

        On a side note though, I really want to thank you for your blog, I don’t know how often you hear this but, I really enjoy reading it. Its helped me alot with dealing with my own experiences, and seeing Owen doing so well and seeing the fighter he is, its just amazing! My counselor actually was the one who told me about Life after the NICU, and from there I found this blog.

        Thanks for the comment back too.

  31. Pingback: Posts of 2012 Every Preemie Parent Should Read | Ain't No Roller Coaster

  32. Thank you so much for taking the time to write about your family’s story. As a proud new follower and fellow preemie mom, I am so appreciative of you stating what I can’t seem to put into words. I look forward to reading your blog again and again!

  33. I have found your blog off Facebook and while my son’s NICU story is quite different than Owen’s, I have felt the same anger. I had a friend (had being the operative word) who never wants kids. When the son of a coworker was in the NICU, I commented to this friend how I hoped my coworker would reach out to me if needed, as I remember what a lonely place it can be. She remarked that I was overstating and over dramatic. I think until you have been there, knowing your child almost died…. it’s something you can’t understand. People who haven’t been there should just be quiet and thankful they haven’t had that experience.

    • Thank you for stopping by, Stacy. I’m sorry that your former friend tried to downplay, rather than attempt to understand, what you’ve been through. No matter the outcome, we didn’t get what we had hoped for or what we expected and lost expectations need to be grieved too.

    • Came here from danielle’s blog. My first thought was, what was it like before the internet offered a forum to share the triumphs & emotions of having a premature baby? A mere 20 years ago. I know what it was like because I’ve been a therapist for over 35 years.

      The internet has provided an invaluable support tool for mothers. IMO

      As expansive as the internet is, not everyone has learned perfect social skills for talking to a mother of a preemie. Each time it happens to you is an opportunity to teach that person, to l

      et them know how their comments hurt, to share more of what your life is like, to invite them into a better relations Findhip with you, or, walk away from them to affirm yourself in your ability to withstand many more years of imperfect commentary from relative strangers.

      • Postscript (because the reply box wouldn’t let me enter more)
        My unsolicited advice: seek out a mother of a preemie who is now 20 years old. Form a relationship with her. IRL

      • Thank you for comments, Barbara. I couldn’t agree more, I think that on the most part the internet is a wonderful tool for special needs family but I would never want it to be my sole place for companionship. My mother and father a great resource for me – they too have dealt with extreme prematurity and like me also had another typical-needs son who was 27 months older than their child who spent months in the hospital. I now look at my brother, who is 38 and still struggles with ADHD ,and think about how alone my parents must have been. ADHD wasn’t understood in the 80’s even more so than it is now. As his sister, who knew my brother was a preemie and that ADHD (ADD at the time) was common with preemies, I still didn’t see my brother as having a special need. I just thought he was naughty…really, really naughty sometimes. There are some members of our extended family who still see him as a bit of a black sheep and would never consider him as having special needs. It was seeing what my family went through that was one of the biggest reasons I started this blog. I wanted a place to educate – as well as celebrate, heal, and connect with families who have similar journeys. Thank God for the internet, but it’ll never replace those IRL friendships.

  34. Hello. I haven’t read your blog before because I do not have a preemie, but a friend posted this link on facebook so I read it and most of the comments. I have a son with special needs and it is really amazing how similar the experiences are. People probably get sick of seeing my posts on facebook about my son’s particular needs, but like you, I feel like I am raising awareness. I think a big thing people don’t get is the pervasiveness of caring for a child with special needs is. There is not a single part of your life it doesn’t impact. The costs are much higher for meds and therapies, it’s hard to find a dentist that can deal with your kids, you have to learn more about pediatric sub-specialties than you even wanted to, and it just dang takes a lot of energy. I am unable to work outside the home. I’m sure some people around me roll their eyes behind my back, but they are clueless! Just want you to know I liked reading your blog and feel solidarity with all of you…best wishes and prayers for the health of all your little ones!

    • Keep spreading the word, Beth and if you need another place to spread them, I’m happy to share on my social media sites too!

  35. Every weary bone in my body that has worked on being grateful and bringing balance to life is giving you a standing ovation! Of course we still enter life and use a positive attitude to live fully but the other sometimes devastating truth is just as real. Thanks for sharing this.

    • Thanks for your comment and solidarity, Heather. I feel like your discussion re: positive attitude while acknowledging the truth is really validating to what I hoped to convey in this post. Thank you.

  36. I am not the parent of a premature baby but I am the parent of a special needs child. This was an awesome post and I totally get where you are coming from. I remember when my nephew died and 7 months later a friend saying “are you not feeling better about that yet?” I was completely astounded! We weren’t talking about missing out on a promotion for god’s sake, it was a loss of massive proportions that I would never get over it!

    • Thanks for the comments Lyndylou! I agree, all types of special needs, not just just preemie, parents have similar feelings. I am sorry for the loss of your nephew. Yes, that is definitely, something you get through, not over.

  37. THANK YOU FOR SHARING WOW!!!! Sometimes we don’t want to speak of the reality because of the guilt we will feel about sounding ungrateful, but thank you for posting this for the parents that feel this exact SAME way but cannot get the words out…I look back at some of the issues we had with Thomas in the NICU and how scary, real fear we went through, and I can honestly say that only Faith got us though it. We were told all of the “complications” he may have. From being blind to being on a respirator for the rest of his life. We were also told to be prepared to loose him or make a decision to take him off life support. I don’t care how strong of a person you are, hearing those words about your child is the most devastating feeling. And that feeling of loosing your child changes who you are. The fear is like no other fear. Hearing his chances and outcomes scared the living hell out of me, but my husband wasn’t ready to give up on Thomas. Me, myself, was scared, just scared plain and simple scared. I didn’t know what to expect for my son. The thought of loosing him was unbearable, but the thought of him never having a quality of life was as equally unbearable. But we couldn’t give up on him. With a grade 4 and 3 brain bleed, Drs. had very little hope that he would “thrive”. fast forward three 3 years I can say that he isn’t just thriving, but he is surpassing anybodies expectations, and I can honestly say he surpasses mine because every milestone he surpasses is a standing ovation for im because he wasn’t “supposed” to do it…I know Thomas’ case is rare and we are very blessed that he isn’t what the drs thought he would be..(blind, tube fed) but I know , like you said, the scars still ache. The NICU has changed me in so many ways. Thank you again for sharing.

    • Thank you Monique-ka for sharing your story with your sons premature birth. I am happy to hear your son is surpassing expectations. It’s amazing how each small step brings so much joy, isn’t it. Thank you for the note. I love hearing about each superhero preemie and his/her parents’ journey.

  38. another preemie momma here. I think this was posted awhile ago but I just saw it from a friend on facebook. YOu are right on the money. I have twin boys born at 28 weeks, we are just a few weeks shy of their four year birthday. They’ve come a LONG way but even now are still dealing with effects from their prematurity, lung disease and growth issues mostly. I still fear them getting sick, although they ARE handling it better as they get older and we are sooo blessed. I read somewhere that NICU parents experience PTSD and I so think thats true. We lived a different reality, have seen things and lived things the average person has not, that doesn’t just go away when we walk out of the NICU. It changes you. Hopefully like you said it can be for the better and God knows we sure appreciate milestones that other people don’t see or “get” but the fears, the unknown hang on to. I don’t think any one really “gets it” unless you’ve been there. Nice to meet another NICU veteran!

    • Hi Holli, nice to meet you! Your sons are adorable and your blog is great. I look forward to following the rest of your story.

  39. Pingback: What I Wish Everyone Knew About This Preemie Life | Ain't No Roller CoasterAin't No Roller Coaster

  40. Pingback: Coming to terms with "Almost" | Ain't No Roller CoasterAin't No Roller Coaster

  41. Pingback: Time | Ain't No Roller CoasterAin't No Roller Coaster

  42. Pingback: In My Defense: Why it May Seem I'm too Harsh | Ain't No Roller CoasterAin't No Roller Coaster

  43. Pingback: Living | Handpicked Miracle

Leave a Reply