Things you never say to the mom of a micro prem…. Unless you want to get hurt.

At some point in time, whether your child was a healthy full term baby, or a prem or sickly one, you’ve likely been offered little nuggets of advice by well-meaning people. More often than not these nuggets are completely harmless, but sometimes it takes all your might to not snap back with a sarcastic remark, hell, on more than one occasion I’ve been very tempted to acquaint the back of my hand with someone’s face.

‘You’re lucky, you get to go home and get sleep while someone else looks after your baby’

 Really?  That’s the most positive thing you could think of?  You’d be happy to leave your new-born in the care of total strangers, you wouldn’t be terrified of that midnight phone call telling you something is wrong with your child? You think being attached to a machine every 2 hours in place of breastfeeding is fun?

‘Everything happens for a reason’

I can’t fathom how this is in any way or form a positive statement.  I wanted to slap every single person who said this to me.

‘You’re so lucky you didn’t have to suffer through the third trimester’

This one deserved a slap, you’re so lucky I didn’t dish out a back hand when you uttered these words. The guilt a mother feels at being unable to keep her child safely in her belly until she is full term, healthy and ready for the world is relentless, even when we know that we were powerless to prevent it.

‘Will she be normal?’

Our children were born before their lungs were fully formed, they were born with their eyes sometimes fused shut, their skin was thinner than paper and you could see the blood pulsing through their tiny veins, they stood astronomical risks of brain bleeds and NEC to name but a few.  The risk of possible secondary complications from receiving too much or too little oxygen while attached to life support weigh on the minds of a prem parent 247, we have no idea what lays in wait for us in the next hour, let alone the next day, month, or even years ahead.  And what is considered normal at any rate?  Are children with disabilities not seen as normal in their own right? Reinforcing our fears for our child’s future health and wellbeing is not going to endear us to you in the slightest.

One of my least favourite questions while Charlotte was in hospital was one that always struck a chord in me, it callously reminded me of our greatest fears:

‘Aren’t you worried that all the medication in hospital will harm her?’

Yes, we were, you have no idea how terrified we were, when faced with 10+ blood transfusions you always had the thought in the back of your mind of ‘is the blood clean’, ‘what if she is that 1 in a million’, or when her lungs weren’t able to cope without intubation, but the intubation was damaging her oesophagus and vocal chords so we were faced with the choice of a course of strong steroids that, in rare cases and repeat doses, could cause Cerebral Palsy or impair brain function. We are terrified of her developing a multitude of complications from her life saving medication, but thanks for highlighting those fears, much appreciated.

The worse comment ever dished out though was from a now former acquaintance who happened upon us in the shops one day.  I had C with me, wrapped up tight against my body to keep prying hands away, she had her tiny little head out and was watching the world around her inquisitively.  I walked over to say hello as the conversation progressed she uttered the following words:

‘I’m so surprised that she’s alive, when you told me about her I really didn’t think she would make it, I considered praying for you, but didn’t think there was much hope, so I didn’t.’

I am not particularly religious myself, but I found myself praying for my daughter often, if ever there was a time to believe in a higher power, it was then, if not for myself then most definitely for my daughter, that someone didn’t deem her good enough to pray for shocked me.  The audacity to tell me to my face that my daughter’s life wasn’t worth the effort was beyond callous.  We’d received so much support from friends, family and complete strangers who had formed prayer circles across town, in their homes and churches, that for this person to tell me, to my face, that she didn’t think it was worth it…. The outreach of support we had received during our early days was phenomenal, but this singular woman was able to undermine all that positivity in one split second.

By and large though, most comments made are from a place of sincerity, particularly from friends and family, strangers do offer up support mostly, but there is always a handful that we preemie moms need to work really hard at brushing aside.

Charlotte’s teeny tiny stature is a major drawcard for attention when we go out.  On any given outing to the shops or a social event comments are made on her size, how tall, how thin, how tiny, how alert or how busy she is. One would expect such a tiny waif would not be so visible, but you’d be wrong.

It’s as if she has a big flashing light attached to her forehead.  Almost like a homing beacon for pigeons on bad days.  Keeping her safe from innocent, but invasive touching is trickier than one would think. They can come from nowhere on some occasions.  I’ve grown accustomed and immune to the finger pointing, stares, gasps and comments, you’d think she’s the only kid in town that’s a little smaller than ‘normal’.  Dad still notices it often when we go out, I don’t really take notice anymore, I’m accustomed to being the feature attraction at the circus.  But a few months back I went shopping with a good friend and I’m surprised that she didn’t assault anyone by the end of our trip, the attention that Charlotte gets and the constant exercise of telling people not to touch her is something that is a part of our daily routine, I have a bottle of D-Germ and wet wipes prepped and ready to clean her if someone manages to break through our little bubble of safety, but it was a whole new world for my friend and she wasn’t having any of it.  I forget just how different our lives are sometimes, but really, nobody should EVER be touching anyone’s child without permission, I’m not sure how this has ever been acceptable, especially in this day and age.

People are drawn to our daughter, she has an aura to her that seems to be irresistible and I’m in awe of it.  People are curious by nature and to see such a little thing with so much zest for life and strength must be totally enthralling.  We’re always happy to share her story with anyone who asks questions, I firmly believe in raising awareness of premature babies and of pre-eclampsia, I still meet pregnant moms who have never heard of such a life threatening illness.

But with the good comes the bad. The comments. Most come from a completely harmless place and the speaker means no harm and I don’t take offense, although I’ll admit to rolling my eyes secretly on occasion. Honestly, if you had to hear the same sentence uttered several times a day, for months, you’d also secretly cringe, even if it’s well meaning.  Hell even I fell prey to saying one or two myself before I brought Charlotte home and had met a few older micro prem kids.

Things that a micro prem mom hears daily:

‘Wow, she’s real, I thought she was a doll’

Now, I don’t know about you, but have you ever seen a random lady shopping and talking to a doll in her trolley?  If so, please let me know where, I’d like to meet one of these ladies one day.

‘OMG she’s so small, do you know how small she is???’

Well, no I didn’t, thank you so much for pointing it out to me. I had no idea that my micro prem baby is so small.

‘She’s so alert’

Umm…. Aren’t most kids alert to some degree at least? I hear they switch off for a few years in their teens, but we’re not quite there yet.

‘It must be so much fun to dress her up like a doll’

You try finding clothes that fits a child whose weight and height do not correlate, even remotely.  That she isn’t just wrapped in a towel some days amazes me. If it fits her waist it’s too short on her arms and legs, if it fits the length of her arms and legs then she likely looks like she’s drowning in her clothing.

By and large none of these comments are particularly offensive and I will share a giggle with you most likely (even if I secretly roll my eyes just a little), I realise that while this is our normal, it certainly isn’t normal for you.

But there is one comment that is uttered, thankfully seldom, that has me restraining myself from causing a complete stranger bodily harm, and that is:

‘Shame, she is so skinny, you should feed her more’ 

I had it uttered again this weekend and I’m still not sure how I didn’t explode out of resting bitch mode to assault the person who uttered these words. Shit, really, is that the answer?  If only I’d known that all I needed to do was feed her more. Talk about a revelation.  I had no idea.

Now, I know the comment was probably completely and utterly harmless, but pause for a moment and think before you speak to a complete stranger about their child’s appearance. Really think long and hard before opening your mouth. You have no idea what that family is likely going through, or why that child appears ‘too skinny’.

On the odd occasion if the person started off the conversation very nicely, I’ll offer up that she has a history with feeding issues and that we work hard on building up a good relationship with food.  More often than not I’ll get a smile and that’s the end of the conversation,  but now and again you get one, there’s always one though isn’t there?! That one who offers up a sentence like this:

‘Oh, I totally understand, my daughter hates peas, she refuses to eat peas’ 

Or

I so get what you’re saying, my daughter refused to eat for 2 days once’

While I respect that it must have been nerve wracking that Precious won’t eat peas or that she starved herself for a day or two, do please appreciate that out here in the world there are children with serious feeding issues, our kids are smaller, skinnier and more fragile because of far deeper issues than not eating a particular food group or starving for a day or two.  I don’t mean to undermine your stress levels one bit, it is stressful, but appreciate that for some of us, that is a daily occurrence, with every single bottle or meal.

As a result I generally put an end to most conversations before people can comment that I should ‘just feed her more’, it’s a touchy subject.  I have, on the odd occasion, had vivid day dreams about back handing one or two people who have really pushed the envelope in their opinions of our unique situation.

There are so many things that has been said to us since Charlotte was born. Many that other micro moms have said they’ve had to deal with often as well.  So here’s a few more to never say to a micro mom, in actual fact, never say these to any mom, ever:

‘You know that breast is best?’

Normally uttered by a passer-by while you are standing in the formula aisle, reminding yourself that you are not a failure for not being able to produce enough milk, reminding yourself that you are doing what is best for your child. But thank you for pointing that out to us.

‘You need to expose them to loads of germs as soon as possible’

No, you really don’t.  In the first year of your child’s life they are building up their strength, their energy is going towards growing a strong body, building up fat reserves to prevent weight loss when those hunger strikes kick in.  Their bodies are not strong enough to fight off bacteria, viruses and germs before they are a year old. Their immune systems don’t strengthen with exposure, it strengthens over time. Yes, they will build resistance over time to certain bugs, that that is not what builds a strong immune system.

‘You do know that vaccinations will cause Autism right?’

No, they don’t, they keep your child alive. Stop Googling propaganda websites and start looking at cold, hard medical facts. Autism is not caused by vaccinations. While the medical world is still not 100% certain of the cause, it is confirmed that vaccinations are not the source.  Two theories and studies that I am aware of and have heard from medical experts is that traumatic pregnancies and birth circumstances could contribute towards Autism, which is why there is a higher prevalence of Autism amongst pre-term infants, another suspected cause is genetics. That a child manifests the signs of autism around the same time as the administration of the MMR vaccination is purely coincidental, a child’s social development skills start developing around the same mark…

As parents we do the best we can for our children. We shelter them from the realities of a cruel world for as long as possible. Life is not fair, we all know that.  For our prem babies this reality came far too soon and was beyond our capabilities to prevent.  Having positive reinforcement and support from our various networks is critical.  I’ll never forget the private messages of support we received after our girl and her heroic fight got her to appear on the front page of the local newspaper, there were so many well wishes and messages of support sent to us from around the globe, all but one, that I’ve never even mentioned to my husband, it was so vile and full of hate that I immediately deleted it, horrified that there are such cruel people amongst us.  The message read:

It’s called natural selection, you should have let nature take its course….’

The coldest, cruellest sentence uttered to me in my life. From a complete stranger who knew nothing about me or my beautiful daughter and family.

If you ever find yourself in our shoes, if your child is born ill, pre-term or develops complications after birth, do yourself a favour, NEVER, EVER allow yourself to be surrounded by any form of negativity. At that moment in your life, you need support, love, understanding and compassion, if anyone you speak to does not offer any of those four things, walk away, immediately.

And the next time you feel the need to preach to a new mother about her child’s health, if it’s not positive, shut the hell up!!!!

And if the smile seems to be eerily cheerful after your comment, turn and walk away, run in fact, because we’re doing our very best not to inflict physical harm on you!!!

 

2 Replies to “Things you never say to the mom of a micro prem…. Unless you want to get hurt.”

  1. Even though I am not a micro preemie mommy, my daughter was still a preemie and I heard most of these comments as well. They hurt, and upset me. I tried to fob them off at first but then I started retaliating. People dont like that, and I didnt care. We are doing the best we can for our daughters, Charlotte is a beautiful and strong little girl, and I salute you!

  2. Wow! Powerful blog. Karin I’m not sure if I was (although I don’t think I am) one of the thoughtless people to utter such horrendous words, if I am guilty, please accept my sincere apology.
    Love to you and Charlotte.
    Always

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