In My Defense: Why it May Seem I’m too Harsh

I hear it quite a bit.  Normally people are very nice about it.  “You know, most of the people really are well meaning,” they say.  Or more often than not, it’s a comment on this site or somewhere in social media guiding me to be more patient with those who are trying to support me with the words that just stung so badly.

Let’s be honest, this blog is full of posts … especially the most popular posts… filled with “Please don’t say this about my child / my experience” type posts.  The top five shared posts on this blog all fit in that category: “Don’t tell me to get over it“, “Don’t tell me most of these kids catch up“, “Just wash your hands and don’t argue with me about it“, “Never, ever tell me it’s good for my child to get sick” and “Even if you are a preemie parent, don’t assume we hurt exactly the same“.

Some days I look at that list of most popular posts, and even I think, “Tatum, you are a complete rag.  Lighten up.  Don’t be so sensitive.”  And then I’ll go back and read those posts and I think…harsh or not, it’s really how I feel.  The fact that they are very well read posts, tells me it’s also how many others feel.   So, I wondered…why?  Why am I, and seemingly many other preemie parents, so sensitive.

I can’t answer for the universe of preemie parents…but after some reflection, I can answer for myself.  Each and every single one of them comes back to one thing…

I desperately want people to ACCEPT Owen…me…our family and this situation.

I want people to accept that our situation is different.  I want people to accept that we make the decisions/requests that we do, not because I’m psycho-mom, but because our situation IS different.

The reason that acceptance is so important to me – the reason that I struggle to let it go and the reason that I sometimes get a really feisty about it is that I want people to…and I really fear they won’t…accept Owen, not just today, but also for whomever he becomes.

Every time someone tells me that it’s okay for my child to get sick, or that I’m too over zealous on hand washing and vaccinations, or that their situation is exactly like ours, or that I just need to move on because these kids all grow out of their issues…those comments tell me that people don’t accept where we are today.  And if they don’t accept where we are with a cute, smiley little toddler (who looks “normal” but still has significant needs)…If they can’t accept this boy, then what about the future young man?  When he’s a pimply faced teenager, or maybe a somewhat awkward adult, or he can’t run as fast as the other kids or eat what the other kids are eating … will he be accepted then?

When it matters to him.  When Owen’s happiness can be impacted by other’s thoughts about him…then will they accept him?  Because clearly, his situation…the realities of it…they aren’t accepted today.

I accept that Owen will very likely have life-long differences.  I don’t write those words because I have given up hope – we absolutely will continue to push Owen to be the best Owen he can be and the fact is, I think that Owen is, and will be, amazing.  I write those words because I ACCEPT it.  Because I ACCEPT Owen…with whatever his difference(s) turn out to be…he will be okay.  Maybe not everyone’s definition of okay, but my definition of okay and hopefully, his definition of okay.  I don’t just love him…I accept him.  I want other’s to accept him too.

My biggest hope and dream for both of my sons is that we are able to give each the resources and support to find their own version of amazing and for whatever that version is, he feels accepted.  That’s what every parent wants, right?  Our kids to be accepted – and ultimately, to accept themselves?

So yes, I know, I can be a rag who is sometimes a little harsh towards people who probably didn’t mean harm with their words or actions.  I promise, I will continue to attempt to accept that sometimes, a lack of understanding isn’t a lack of caring.  At the same time, I ask that when you hear that mama bear in me roar that you realize behind it is simply a mom who desperately wants her family…especially her children…to be accepted.

2013-06-16  'Marinkovich Family'  025

Photo shared with permission. All rights reserved, Pichette Photography, LLC.

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

16 thoughts on “In My Defense: Why it May Seem I’m too Harsh

  1. This post really resonates with me. I’m not a preemie parent but a mama bear to a medically complex and fragile son. I feel all too often judged, misunderstood, and disrespected by people (even family) who doesn’t get it.

  2. Hi Tatum,

    I worked with you briefly at GMI in PBUS. I have been following your blog for a few months. You have an amazing gift with words.

    My little one has had more than his “fair-share” of health issues. Thanks for writing the words I can never seem to find. Thanks for making me feel like I am not going crazy in my quest to let him be the best Calvin he can be.

    Continue the great work. Your are helping a lot of mamas cope. Thanks!!

    Marie McLean

  3. Once again your words amaze me! You are a Wonderful writer and an Amazing Mom who should never apologize for being a Mama Bear!!

  4. How do you do it…? Just last night I kept myself awake battling feelings of stress, sadness & frustration because I was asking myself those very questions.
    Im a mum of 4, including mum to 1 year old twins, including in that mum to a 1 year old with complicated addition needs.. do I want a trophy or medals.. NO I just want people to accept our family situation and ultimately accept my uk Owen… I too fear if acceptance isn’t here now when he is a cute cheeky baby who in his buggy no difference to his twin sister can be seen… how on earth will acceptance comes when he sticks out like a sore thumb? Unfortunately im talkin about family members.. Im always saying.. ” they just don’t get it” … I question do they not “understand” or do they not “care”
    I have found inspiration from you and started a small blog where I update owens progress, appointments etc and a few family members have joined.. this has become invaluable in making some previous mis-understanders now atleast understand a little more and therefore accept.
    Thank you for not making me feel like a complete crazy over sensitive mum.
    Sorry for long comment.

  5. Exactly! Acceptance. Validation. The best thing anyone ever said to me was, “I’m sorry things didn’t turn out the way you expected.” That was 3 days after Jack’s birth and she said exactly what no one else would accept or admit. This experience was different than anything than any of us had every known and she validated that. Unfortunately, that same person also said about 2 yrs into this journey, “You know, every parents worries that their child might die (hypothetically).” I wanted to scream…so many people have NO idea what is like to actually face/experience that very possibility. I wasn’t worrying about something that might happen…I was worrying about something that very nearly happened on more than one occasion. It’s just not the same…and I totally get it that people try to understand our experience by equating it to or comparing it to something they know or have experienced….but having a breech baby (known for weeks) at term and needing a c-section is in NO WAY the same as having an emergency c-section at 28 weeks to save both baby and mom’s life. Ya know! So, I guess it’s safe to say that I’m “oversensitive” as well. Or maybe, just maybe, some people are “undersensitive” haha! Guess I need to blog about this myself instead of hogging your comments! Take care!

  6. I started reading your blog in March after my former 25 week daughter came home from the NICU. I wish I had been reading it at the very beginning of our journey. I have recently been struggling with these very feelings. Asking myself if I am being too sensitive about the hurtful things people say. Thank you for writing truthfully, for finding the words that so many preemie parents struggle to express. I have gone back and read every post you have written. So many of the feelings you share are similar to my own. Thank you for helping me know I am not alone.

    • Heather, Thank you for introducing yourself. I hope your daughter is thriving at home. I look forward to getting to know you more on here.

  7. I adore you. I’ve said it before and I’ll say it now, even though you’re a rag (haven’t heard that term since 1992 when my brother called me one all the time so thank you for that awesome memory heh) – YES. We just want the world and other parents to accept our kids. I’ll make you a deal. I’ll accept and embrace Owen and tell the world how magical and wonderful he is. And tell them that you – hand washing freak that you are – are YOU because hello and DUH that’s what matters. Not them. Not the fact that they don’t get it. Hand washing matters sometimes more than others. Being notsick matters. Being kind, and seeing a kid for who he thinks he is matters. It matters.

  8. These so-called “harsh” posts have been amazing for me and my family. Our little miracle was born at 24 weeks and less than 1 lb. While everything seems fine right now, I am flat out refusing to travel during the holiday season to prevent exposure in our first flu season. I am not sure everyone in the family approves or understands my position, but I maintain my refusal to travel during our first flu season. Posts like this help me reinforce my position and allow me to send it to fellow family members who are less understanding. Thank you.

    • Thank you, JH. I’m glad these posts do have value to others too. For me, it’s often just getting stuff off my chest – but I also hope that it helps to start the conversation. Good luck with this cold and flu season and know there are many of us supporting you.

  9. I appreciate what you wrote. I stumbled across your blog in a funny way, actually looking for tips on getting my tactile oversensitive daughter to wash her hands. 😉 I couldn’t help but click on something that paired “oversensitive” with “parent” cuz I totally feel that way sometimes! My girl–as well as my second child, a boy–has sensory processing disorder, and the conversations I have with my mom are usually so frustrating to me for that same “acceptance” reason. It’s difficult enough for me to accept my daughter’s oversensitivies at times. Sounds uncaring, as you mentioned, I know, but when you have a +50lb six-year-old attacking you because she’s having a panic attack while you’re not only oversensitive to touch yourself but are also holding her newborn sibling, or when you have to carry that now-even-heavier child to her bed at the age of seven because she’s so out of her mind tired and freaking out, you’ll understand!!! It’s physically and emotionally draining and so hard to not think stupid thoughts about the situation and not see things as they really are. When I am trying so hard to be sensitive to her needs and my mom just blows everything off, I could seriously…..argh!!! So, I know my experience is completely different than yours–completely–but that idea of acceptance–as well as your statement “a lack of understanding isn’t a lack of caring” just really hit home with me. I truly appreciate you sharing your thoughts and feelings publicly. I realized my mom really does care, which is very likely why she says what she does. She’s not in my shoes. She only sees her granddaughter once or twice a year since she’s on other side of the country, and my girl is pretty good at keeping her head on with people she’s not as familiar with (aren’t we all?), so my mom really has no idea what daily life is normally like. And, she doesn’t understand how I really was so much like my girl growing up because I had brothers (many) to argue and fight with when I was frustrated and overwhelmed (just get it all out!) so I was never in her face with my emotions, like my girl often is with me, until I was a teenager and my brothers had moved out. At that point it’s slightly more “acceptable” 😉 / expected behavior, although she still wondered at times if I was on drugs. (Nope! Major goodie-goodie, actually! Imagine my shock/hurt when she asked me a couple times over the years if I was!)

    It’s difficult to heal from (a) difficult experience(s) when the consequences are in your face every day, so it’s very easy to be oversensitive about anything and everything. Best of luck to you and your family, and to all who are “oversensitive parents” in finding that peace of mind we all need so desperately.

    • Thanks for the note, Rebecca. It’s nice to meet you and I could relate so well to your SPD concerns. I haven’t written it yet, because I’m still processing it, but my older son has SPD and I totally understand the panic attacks and how they manage to hold it together in front of other people and then all hell breaks loose as soon as they feel safe and many times, it feels like the world doesn’t get it. While I didn’t really write about the SPD portions of it, I have written about behavior issues (he also has PTSD from the trauma of his brother’s many hospitalizations) in the post that I have a feeling you’ll relate to. Hugs to you – it sounds like your a wonderful mother! http://aintnorollercoaster.com/getting-the-stars-back-the-special-needs-of-the-sibling/

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