Natasha Lester
by NATASHA LESTER
Every week, when my daughter was four months’ old we would go to Coles and buy ten packets of Stayfree Maternity pads – not for me but for her. She was being treated for hip dysplasia and was in a cast that extended from her chest down to the ends of her toes.
Between her knees was, quite literally, a broom handle strapped to the plaster to keep her legs apart – the distance from one foot to the other was fifty five centimetres, approximately the same as her height.
It would be like someone fixing and strapping my legs 165cm apart – given that I am not all that flexible, I doubt that it could even be down.
So there we were at Coles every week, me and a baby wrapped up like a Christmas gift in a bright red fibreglass cast. Because of the cast, she couldn’t fit in a trolley seat so she was perched and strapped right to the very edge of the pram, propped and supported by a number of old towels.
We would fill the pram with our ten packets of pads and there would be no room left for the groceries. So we would go through the checkout and buy our pads, always being careful to avoid the eyes of the operator who would look at me as if I was about to begin bleeding all over the aisle, and we would unload the pads into the car. Then we would go back and buy our groceries, making sure we chose a different checkout operator for our return visit.
The pads were meant to be stuffed into an opening that the surgeons had left in the nappy area of the cast. Over the top of the pad, we were told to wrap the biggest nappy we could find.
Nappy changing, as we all know, is something you do a lot with a four month old baby. Nappy change for my daughter took about half an hour. Because with a cast that only gets changed every six weeks, things can get pretty smelly if you’re not super careful. My daughter became used to us aiming the hairdryer (on a cool setting of course!) under the cast at every nappy change to dry out the skin left wet from wee and from our attempts to clean everything off.
‘She’ll be able to bring her knees back together by the time she’s eighteen,’ the surgeon joked with us on one of our many visits. My husband laughed. I did not. Because going through this with my daughter changed the way I viewed motherhood.
Everyone says that babies are dependent on their mothers. But even a baby is capable of some independent movement. They can roll over. By six months, many can sit. Then they begin to crawl. Not if you’re stuck in a cast.
Natasha’s little girl in her cast.
The experience I had with my daughter was one of total dependence. ‘I don’t think I could do it,’ some people said to me. To which I always wanted to reply – but never did – ‘it’s not as if I have a choice.’
My little baby, roasting in her cast in her cot at night like the chicken inside the duck inside the turkey, cannot turn herself. I’m not going to wait until she is cooked through before I turn her. So I get up several times a night and do it.
‘At least it’s not cancer.’ Or, ‘At least it’s not her heart.’ This is also what people said to me. And of course I was always grateful that what she had could be fixed and that it was in no way life-threatening. Every week we had to walk past the palliative care unit at the children’s hospital on our way to have my daughter’s cast checked and every week I was thankful that our path did not stop there.
But those platitudes hurt. Because a platitude is an almost thoughtless response to a situation that no one likes to think about. No one wants to imagine what it is like to hold the hand of their baby while they have the anesthetic for yet another operation; no one wants to imagine what it is like to kiss the forehead of their howling baby while a nurse takes forty-five minutes with a loud and vibrating saw to cut the plaster off the baby’s skin; no one wants to think of the rage they would feel when they see that the nurse has cut their baby’s skin with the plaster saw in five different places.
But to be told, when I’m holding a baby who stinks like a public toilet because of all the poo and wee stuck to the lining of the cast, that I’m doing a good job is not what I want to hear. Because I don’t feel like I’m doing a good job. I am simply surviving until the cast is gone. Ask me instead, how I am, really ask me and really listen and I will tell you and I will be so grateful that somebody took the time to move beyond platitude and into true empathy.
Natasha divides her time between writing novels and playing make-believe with her three children. Her daughter is now out of her cast – hopefully for good! Natasha’s latest novel, If I Should Lose You, is – unsurprisingly – about motherhood but also – more surprisingly – about organ donation.
Have you ever had someone offer meaningless platitudes when your life has been affected by illness or death? How did it make you feel?
Comments
73 Comments so far
As my 3mth old beautiful little girl is 3 weeks out from getting the cast put on, I found this article both confronting and extremely helpful at the same time. Already we have been thrown a whole heap of comments like “it will be ok”, “it could be worse”, “it’s only short term” and the best one, “it’s worse for the parents than the child.” I understand it is what people say when they don’t know what to say, but it doesn’t help. In what other situation is it ok to say something which trivialises the experience of someone else purely because you couldn’t take the time to think of something that demonstrates support. I think what everyone has to remember is no matter what it is, watching your child in pain and discomfort is incredibly difficult for anyone. Yes there are others worse off and yes you have to think positively, but that doesnt mean watching your sweet little girl go through what these kids have to go through is any less of a crappy situation. What I have found most helpful is when my amazing friends have said something like “what can I do to help?”, mum would give me hugs, my husband would let me cry on his shoulder or when my bubba was in the brace my girlfriends would hold her while I got to eat my lunch. Those are the moments when you feel loved and supported. Those are the moments when you re-energise and get to remember that being a mum is the most difficult, yet rewarding role you will ever have in your life. I think it is then that the meaningless platitudes offered don’t seem so bad.
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When people found out that I had cancer they would tell me that I was lucky that I found the lump early.
I have to say, that while I was throwing up my toenails, and feeling like I wanted to die, that I didn’t feel particularly lucky at all.
I think people say these silly things because they don’t know what to say, I really believe that they have their hearts in the right place.
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Brilliant article, that was really touching. As someone who is definitely guilty of offering platitudes it’s good to know to drop the habit. Sometimes you just don’t realise until you’ve been on the receiving end of a particular behaviour yourself – or had someone articulate what it’s like to be in that position so well.
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Just as an aside….when I buy pads I always use a checkout with a male attendant. For some reason I don’t find it embarressing
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I had to buy them for my mother and sisters, and later for my daughters, To me it was like buying a loaf of bread, no-one should make a big deal of it.
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I was in a seroius car accident a few years back from which I suffered spinal injuries. It took 6 months for me to regain the full use of my legs and to be able to walk unaided. Almost everyone that I spoke to at some point said “Well at least you can recover…”, At least your not in a wheelchair”… “At least, at least, at least”. It was exceptionally frustrating. It made me feel guilty that I was not being more “positive” that I was not inspirational enough as the girl who was able to recover from a bad car accident. I felt like saying “Sorry, this my LIFE, not just a bad thing that happened to someone you know”.
After a long time, and considerable effort on my part, I started to accept myself and was able to (without judgement or accusation) say to those people “Yes, I am lucky in that it could have been much worse and there are plenty of other people that have it so much worse than me, but that’s not to say that I am going through is not extremely difficult as well”. The reaction from most people was to say of course that was the case and that they did not mean to diminish what I was going through. And that simple acknowledgement really helped me feel much better.
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You were embarrassed about having to purchase sanitary pads? Really?
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Buying ten packets of maternity pads at a time? Yes, I’d flush at that.
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I think it is was the VOLUME of sanitary pads that caused the embarrassment.
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Have been where you are Nathasha. Sending you love. X Keep as good an attitude about it all as you can, you will look back and be proud of yourself. Nobody knows how tough what we have been through (babies AND parents) is unless they have. Dunno if this is helpful or hurtful but also get a second opinion. Our specialist in Newcastle was recommending six to nine extra months in the cast when we decided to get a second opinion in Sydney. The new specialist took her out of the cast that very day! He said she possibly had never needed to be in it at all. We were too busy being elated for her to get angry. Anyway I know not all stories end that way but wanted to mention my experience anyway. Maybe it’ll help another reader.. Keep smiling and give that gorgeous child an extra hug from me
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The daughter of friends of us had also hip displasia, though it wasn’t picked up by health professionals by about three months, even though her mother kept going to doctors and health nurses and saying that something is wrong with her daughters hips. By the time she had finally surgery and was put in a cast she was already over 5 months old(which was in the middle of summer).
I remember well how our friends struggled with the day to day care.
Yes they did say it was hard, but at the same time they had perspective and thought it could have been worse and appreciated the fact that it was something that would resolve in a few months time. Their daughter caught up with walking and straight legs by the age of about two.
So while I am sure it is hurtful when people don’t say the right thing and you don’t always want to put things in perspective, I still think it helps to move on to a positive thought.
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Of course cancer is a worse scenario than hip displasia.
But I hate this “grief/anger/hurt” competition. I see it in the comments on this website all the time. Treated like crap by your doctor and had a horrible birth experience? Just be glad that you didn’t give birth in a tent sub Sahara Africa. Are you an adult whose arents recently divorced? Just be thankful that it didn’t happen to you as a child or that they are at least still alive.
There will always be someone who is worse off than you. Unless you are a single mother watching your eight children starve to death in a refugee camp in the Sudan.
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Of course her baby
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Ok. Maybe it would be best if MM just printed a list of acceptable things to say to mothers. It seems that everything causes offense now days.
As a mother whose daughters work in pediatric healthcare, one as a physio who fits these plasters when she’s not tending burnt children and the other who is an oncology specialist, I can safely say that a mother whose baby has hip dysphasia is still a very, very, very lucky mother.
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Today I challenged the person who told me ‘there is always someone worse-off than you’, because that only makes me think that there might be better-off people who are thinking of me as the mother who is worse-off than them.
There is no scale that we fit on to earn the right to be stressed, strong or sailing through. We all have fears for our children and are challenged by their needs.
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What a beautifully written story – and I’m so glad for you both she’s out of her cast now.
When a person is struggling, the last thing they need to hear is, ‘Oh well, it could be worse.’ Which, really, is code for ‘Stop your bloody whinging.’ And if it were cancer, the platitude would no doubt be, ‘Oh well, at least you’re not dead’. Everybody is entitled to feel how they feel during a difficult period of their lives. The reason why is completely irrelevant.
Loved your interview in The West Weekend yesterday, btw.
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Thank you Jennrywren, glad you enjoyed both pieces!
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Unfortunately my son has had both hip dysplasia and cancer! So based on that experience I have to say that at the time – no matter what is wrong with your child when they are unwell or having treatment for anything it is hard, stressful and a challenge at the time, regardless of what other people around you are going through.
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great story, thanks Natasha. Sometimes people don’t know what to say, and this helps them with some ideas (and don’ts!). I think mums want empathy not sympathy and for their situation not to be belittled.
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My daughter has just been diagnosed with autism. I also have a son with autism. I often get told “well you are the best person she could have been sent to” or the old chestnut ” god only gives us what we can handle”. I often think bloody hell cant it be someone elses turn? I dont want to be the best person to do this i want my daughter back. Then again i also think actually i am lucky it isnt cancer, she isnt dead, we just have to do the best we can with what we have got. Which is a gorgeous little girl.
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This is an interesting discussion, partly because if it weren’t for articles like this the discussion would never be had. We would all just continue on with polite platitudes because that’s what we do- we want to be polite, and show we care but we really don’t know how.
For me, my daughter being in hospital for her first 4 1/2 months was hard because of the loss I felt. Obviously there was the stress, the worry, the heartbreak. But I made sure no one saw that. What was really tough was the fact that everyone else got this really wonderful last trimester, and beautiful first week in hospital, followed by a get to know you period with your newborn. I missed it all and I felt robbed.
And no one really knew how to talk about that- it seemed so trivial, but it really hurt that my friends would meet at coffee shops or each others houses while i schlepped into hospital to watch my baby in pain. It was like boarding a plane to explore the delights of Italy and landing in wartorn Sudan.
You just don’t know what someone is feeling when they have an experience like this one. So talk to them and find out.
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Hi Mum of two cheeky monkeys.
Thanks for your comment – I’m glad you think it is something worth discussing. I have to confess to being a little nervous about putting this article out here on Mamamia as I wasn’t sure I’d explained how I felt properly or whether people might misunderstand where I was coming from. But everyone has been great and of course there will be people who disagree with what I’ve written but, like you’ve said, that’s all a part of having the discussion and of giving people a chance to talk about how they might have felt when they were on the receiving end of platitudes – which may be the same as or different to my experience but it’s good to have a chance to hear all the different experiences and opinions regardless.
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My future niece wore a brace for exactly this reason, now at 2 years old she walks, runs, climbs into your arms and is exactly like everyone else. Her lovely mother Lisa, after watching her have such a rough start to life has really enjoyed watching her grow and become the person shes to be.
I know its not what you need to hear but its empathy, You are not alone. You’ll be able to have your child move exactly like everyone else, We’ve been there, with everything having to be in arms reach of our little Annabelle, with her not being able to move and with those ‘butt explosions’ at 3am.
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This is an article I can truly understand. My son was a breech bub. They do routine scans to check for any abnormalities. Well due to a healthy dash of incompetence he was not referred to a specialist until he was seven months old. He was starting to commando crawl and was now in a full hip brace that also splayed his legs out like a frog. Well he learnt to commando crawl in his brace and even roll. Three months later he went from full time to part time in the brace. He still has catching up with his gross motor skills but is doing great. My daughter had dislocated hips at birth. In a brace at five days old. Would not know it now. No it is not cancer. You can’t compare it to that. But it a very tough gig.
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Oh my gosh; poor little poppet; I hope she has an easier run of things from now on after that hard start.
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I keep re-reading this piece today, and it keeps sitting uncomfortably with me. I was also born with hip dysplasia and was in a full body cast, & spent time in hospital in traction. I’m 40 now, so this was many moons ago. Back in those days my mum had to leave me in hospital at night, and because of this I weaned myself from her at 10 months which broke her heart. In re-counting those stories still to this day, both of my parents will talk about how being around children with terminal or life-long diseases and disabilities really helped keep their distress in perspective. I understand that platitudes are not helpful, and that we all need to be surrounded by friends who can display true empathy, but surely some healthy perspective can be good for the soul too?
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There are a lot of ME statements in this article and I hope her little girl does read it one day. I can honestly say hugging my child 4 weeks into a cast is slightly unpleasant on the nose…but ooohhhhhh my those hugs are the best!
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Perhaps they’re not being thoughtless: maybe they’re just responding to it the best way they know how. I think that the “well at least it isn’t [insert ailment]” is an automatic response for when people don’t know what to say. I have a long term illness and have had this response many times. I used to get quite upset thinking “well just because its not cancer doesn’t mean I’m not struggling,” but now I see that finding the right thing to say to someone suffering with something they don’t really understand, is a pretty hard thing to do.
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This really brings back some bad and sad memories for me. 13 years ago my baby girl was born with hip dysplasia. I was made to feel bad for being so upset about my tiny baby being strapped into a full body harness because, as you say, it wasn’t a life threatening condition and therefore apparently I should have been grateful for that. I course I was effing glad my baby didn’t have cancer! but she still had something wrong with her, was in pain and it was very stressful.
Caring for a baby with hip dysplasia is incredibly difficult and I wasn’t grateful for that in the slightest. I hated not being able to cuddle her properly or give her a bath. I hated the chafing and the fortnightly physio visits to get the harness adjusted. Most of all though I hated being made to feel bad because my baby had a treatable condition (by people who had never experienced having a baby who had anything wrong with them!)
Thankfully these days there are support groups online, but in those days there weren’t and I felt very alone.
Five years later my son was born perfectly healthy. But a year later we found out he had peanut allergy. The number of times people have told me I should be grateful about that too is also mind blowing!
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Whilst, I think it is important to acknowledge our pain and struggles, it is JUST AS important to keep it in perspective.
I hated it when my MIL used to say the most insensitive things about my sons illness. But she was doing it on purpose. I think if someone is showing sincere empathy, but gently leads you back to reality, than that is helpful.
I know for me, when I keep telling myselfe how hard it is, my feelings are just more intense. But when I tell myself that this is just a challenge/phase, I tend to not sink inot sever depression.
Horses for courses I aguess. Because, for me, I have experienced sever and serious depression and I know how dangerous it is for me to go into “how hard” life is… Once I had mastered this whole “its just another challlenge”, I have never sunk into another depression.
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I feel for you Natasha. We were one of the lucky ones, as my son was diagnosed with 2 clicky hips after birth, but his hips managed to self correct after 6 months of check ups. I remember researching what we were up for if his hips didn’t come back, and it really scared me. I already had one child and I found motherhood hard enough with just a healthy child. I really feel for what you went through with your daughter, you definitely have my empathy.
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I was a child born with hip dysphasia – although after quite a number of efforts to treat me, doctors found I had no hip socket. Few surgeries later, a 20cm scar on my hip that I can still see – I’m now 35yo – and plaster just like your daughter, my Mum had to cart me around. She didn’t drive and would get me to all appointments using public transport. She had a toddler son as well. Now as a mother of two children, I am totally amazed at what my mother did and felt for those three to four years of treatment I received. Natasha, I would be more than happy to really listen to how you feel about what is happening in your’s and your daughter’s life. One of my most treasured childhood photos is of me in my plaster and bright red wheelchair.
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I think it depends. First of all, it depends on if they completly ignore the pain and situation you are in. But if someone sincerly shows empathy and then goes on to the positives, then that is helpful.
Whilst, I am a big believer and advocate in not only feeling the pain of our lives, but acknowledging the challenges that come up for us, I find it frustrating watching people feel sorry for themselves. We all have something to be grateful about.
When my child had serious health complications, )that meant life and death scenarios), people could not understand why I decidded to make every day count! Well, I knew that if my child was going to have a short life, then I was not going to make it worse by going into a deep dark depression.
Luckily, we are now all good. But, it would be worse if i decided to let my own pain overtake our lives.
In saying all that, this takes a lot of training and I was not always like this. But now, I just can’t allow myself to go into that darkness and worse, stay there. There is always something to be grateful about. There is also always someone worse off then you and me.
Let these things go. Life is not that bad. When we get annoyed at other peoples stuff , then that in iteself is going to lead to consistent unhappiness. Well, as my friend who’s father murdered her mother and children says “stop whinnging about all your shit! It is not that bad”
Interesting.
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I agree with ‘I disagree’
. There are no promises that life will be easy or as we imagine it. I have unfortunately had several friends that have been faced with tragedy – including friends who have lost full term babies. I think you really need to put things into perspective in life. In the end, if you are faced with things that will or can pass, you need to deal with them the best you can & carry on…And you can’t always expect others to be fully tuned in to what you are going through. many people carry burdens of their own & are also just trying to get through the day & hope that the next may be a brighter one.
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Such a measured and sensible comment.
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It’s good to hear that I haven’t been offending everybody I talk to!
But I think I’ll keep trying to avoid the platitudes … because it seems the ‘safest’ and most respectful thing to do.
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Natasha, it sounds like a traumatic journey you have undertaken with your little one. My cousin’s hip dysplasia wasn’t diagnosed when she was born. It’s only this year, in her early thirties, after two painful pregnancies, and a second hip replacement that she can say for the first time in her life she doesn’t wake up in pain every day. She has walked with an obvious limp her entire life. You are being gutsy now, so that hopefully, your little girl won’t have to suffer later. Give yourself a hug – and feel entitled to give the nurse a serve for the rough plaster cutting!
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Having a child with serious scoliosis I disagree, I find that people generally care about the little girl in the plaster cast even those who don’t even know her! I’ve rarely heard at least it’s not cancer but on the odd occasion that I do I AGREE whole heartedly because IT’S NOT CANCER, it’s not life threatening. It’s bloody tuff no one says it isn’t and my child unlike most with hip dysplasia will not be cured, will not be totally normal by 18. After years of plaster, casts and surgery she will still have a noticeable curve to her spine….but I say THANK GOD IT’S NOT CANCER.
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I do this to myself every day.
My daughter has multiple mild disabilities, syndromes and disorders. We too have had the strangers ask so loudly what was wrong with my 6 week old, however at nearly 8 they are easily missed.
If I don’t think “at least” then some times I get buried in the “why me”.
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I completely understand the where you are coming from in this article. I have a 2 year old with a severe heart defect who has had 3 open heart surgeries so far and more to come. His future is unknown and we live with that uncertainty every day. People love to remind us that “he’s a miracle” to be “thankful he’s alive” whenever the day to day care of a child with life threatening illness becomes too much for me. I get it and to simplify my life in this way makes me feel like they are discounting the horrific experience we have already endured and the pain to come.
We know how lucky we are that he’s here – we’ve been to too many heart baby funerals and seen too much heart ache whilst in hospital to ever take him for granted. We learnt early on not to spend too much time thinking about others experiences in comparison to ours as it is in no way helpful. it doesn’t lessen our grief though – you go into a pregnancy expecting a healthy baby and when that is taken from you, it’s normal to grieve for that ideal that was lost. Regardless of what else others are going through this is OUR reality and OUR child who is lIving this life and if I want to vent about how shitty it can be at times – I need people around me who can at least listen without the useless comments – we’ve lost a number of friends thanks to this very issue!!
I think people try their best to speak positively and that’s where these platitiudes come from – I’m sure I’ve been guilty of saying similar things before this experience!
Another one that gets me is when you tell your story people say “oh I couldn’t handle all that”… You dont think you can handle it because you don’t HAVE TO! So just because I seem to manage that somehow qualifies me to have a child like this? That makes me feel like I brought this on myself some how!!
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I agree Heart mum – it’s certainly made me rethink what I say to people when they are going through something difficult in their life. I’m sure I used to offer platitudes too whereas now, like you say, I let them know that when they want to vent, I’m happy to listen to all the venting they want to do and that I will never judge them because of that.
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Great story Natasha, I too had a little girl with the same hip spica plaster , she is now 20 and had a triple oestotomy when she was 12 . She has coped with this with a smile and amazing stoicism . She walkes with a limp and if she is questioned about it she just says its her hip. She is the 2nd of 4 children and is currently touring Europe . I remember when our GP diagnosed it he said to me, you are lucky , this will always affect her but it’s not cancer . How right he was , our 4th child was diagnosed with cancer in 2009 and died in 2010 , it was far far worse then the hip. She is a lucky girl .
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I find platitudes very shallow. Some of them down right rude. But I also understand the whole “at least” scenario… until I realised my situation with my daughter put me at the end of that “at least”… My daughter died at five and half months. She had cerebral palsy, of the worst kind. She ate from a tube in her stomach, she had severe spastic paraplegia… which meant she would never walk, never sit up, never crawl. She could not speak.. But she could cry and she could smile and she was very loved. Sometimes people vent to me about how hard their lives are… and I sympathise because I know how hard having children with disabilities is… (so hard to see your child suffer and not have adequate support) but I find it hard not to look at their children and speak those dreaded “at least”. At least your child can walk. Speak. Eat. Hug. Kiss. Read. Giggle. It’s hard not to look at kids with problems and not see ALL that they CAN do… hard not to compare to my daughter… But there is always the empathy too… because I know how hard it is to see your child with any kind of problems. I know how hard it IS to watch your child go through surgeries, painful treatments… all of that. I know far more than I ever wanted to… So I avoid saying words like “at least”… but still, I wish sometimes they could have seen firsthand what it was like to be at the other end of that “at least”…
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I’ve seen photos of your little girl through Heartfelt, she was so beautiful.
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Thank you.
Yes she was.
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Sophie, I am so very sorry for your loss.
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Thank you.
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I hear you about being frustrated with platitudes, I have a child on the autism spectrum and receive a range of platituded regularly, many of which are irritating and often hurtful. However, I think they are generally coming from a place of kindness and wanting offer a silver lining in an otherwise shitty situation… to support you to feel more positive about what is going on. This is a intended kindness that is may be badly timed or even just plain wrong but intent is the true empathy and is what we as platitude receivers, need to remember. People too often, just dont know what to say, and at least they are making the effort to offer something, that again (in my book), is empathy. Unfortunately we who are familiar with platitudes know how empty they can be and particularly in dark moments see them as dismissive. But, for our own mental health, we all need to look for silver linings and find things to be grateful for.
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Look at that gorgeous smile on your baby looking back at you.
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Natasha, I couldn’t agree more. Platitudes do hurt, and they often come across as thoughtless. In peoples defense however, I think they come from a good place, more often than not people simply don’t know what to say.
I have had a lot of experience with platitudes. At the age of 28 I was diagnosed with an incurable auto-immune disease. I went from a very independent, social Hairdresser, to someone who could no longer work and had to go back to live with my parents. I needed help to shower, go to the bathroom etc. It was beyond humiliating. Due to huge doses of cortisone, I put on over 20 kilos in 6 weeks, I didn’t have a single article of clothing that fit me and I couldn’t bear to look in the mirror. I could only walk short distances, and had to use a cane. My friends all had basically the same reaction, they tried to be sympathetic, but when faced with a disease they had never heard of, they all trotted out the same old platitudes. “At least it’s not cancer, it could always be worse, at least you won’t die from it” etc. Worse still they gradually dropped off one by one, once we no longer had things in common to talk about, they just stopped calling and visiting. While they were nightclubbing, shopping and dating, I was sitting in doctors offices, having bone scans, MRI’s and X-rays. I understood what was happening, but that didn’t make it any easier to deal with.
That was 14 years ago, and things really haven’t changed that much. My disease has progressed, thankfully due to many, many medications I was able to move out of my parents house. I’m now married with a 7 year old daughter. My husband is probably the only one who gets near to understanding what my life is like, even then he can’t be expected to understand how it feels to be in severe pain 24/7. I can count my friends on one hand, and I’ve long since stopped talking about my disease. If they ask I will tell them whats happening in the shortest possible version, and watch as they squirm in their chairs having no idea how to respond. Often they will tell me I should try this vitamin or medication, having no idea that I’m already on morphine patches and 8 panadeine forte tablets a day and they don’t even begin to take the edge off the pain. I simply nod and say I will look into it. It’s so much easier than trying to explain my situation.
None of the mothers at my daughters school know. My Husband doesn’t understand why I don’t tell them. He hears the sniggers and bitchy comments when he drops our daughter off at school. Apparently I’m fat and lazy and get to sleep in while my Hubby schedules his work shifts around me. To be completely honest I am so past caring. As long as my husband and my daughter understand, that’s all I really care about.
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I can relate to this completely!
My four day old baby girl was placed into a hip splint as she was diagnosed with hip dysplasia, as a result of being breech. It was ten weeks before we got bather her, put pants on her, cuddle her, change her nappy without laying her face first on her change mat. It was very upsetting for us and yes we got plenty of platitudes!
At six weeks old i found a lump in her groin and a day later she was having surgery to correct her hernia, caused by the hip dysplasia. At six months she wouldnt weight bear or roll over. At ten months she wasn’t crawling or pulling up. At twelve months she crawled for the first time. She is now 17 months and not walking…we have heard it all! “at least you dont have to baby proof” “at least you dont have to chase her around” “at least it’s not a mental incapacity”. But i do have to cope with a very frustrated little girl who can’t do things she physically wants to do! She has since been cleared of the hip dysplasia, and thankfully we did not have to experience a cast (platitude?!?) and she is healthy and happy and we wouldn’t love her any more or any less any other way. You don’t have to cope with what you are dealt, you just do.
I’m now pregnant with number two and scared we are going to do this all again!
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Just to let you know Mimi I was also worried when pregnant with baby number three about going on the hip dysplasia journey again but he was born with perfect hips. My first child also did not have hip dysplasia so I hope that, in your case as in ours, it is just a one-off and you don’t have to experience it again.
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I have a daughter with a heart condition (shes fine now) and she has had three open heart surgeries. People around us said ‘it will all be ok’ (Frustrating and I wanted to slap them – how do you know?!) ‘you cope so well’( I dont have a goddamn choice here) Or my favourite, I was breastfeeding and had to express for a week to keep up my supply – ‘Oh your amazing’ (are you fucking kidding? it was all i could do to help her) People dont know what to say when big scary stuff happens and some people seem to want to pull the emotions out of you so they can experience what your feeling. I prefer to cope with this kind of thing alone and if I need to talk or cry I will when im ready. I find its the lucky parents of perfectly healthy kids kids the most ‘sympathetic’ (frustrating-but i understand how they couldnt ‘get’ it)
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I’m pleased to hear your daughter is fine now, sounds very difficult. I mean this in a completely genuine way, but I am sure I would have been one of those people saying ‘it will be ok’ and ‘you’re amazing’. In fact, I can remember saying that to people and am wincing now at how insensitive I must have seemed. If I were your friend, what would be the best thing to say? Should I instead completely ignore the horrible thing and talk about other things ( I have also done that!) How best to show sympathy?
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I had twin daughters, one of whom passed away when she was only a few months old. People on the whole were wonderful but there was also platitudes that made me so upset and angry. My favourites include: ‘At least she passed away before you could get too attached to her’, ‘she was so young, it’s not like she had a personality’ and the all time top response ‘Never mind, you still have one’. While I understand that people were trying to be nice and probably didn’t know what to say – I would rather they said nothing than spout a platitude that means nothing and more often than not, was offensive.
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oh my goodness, I cant believe people would say those things. ‘At least she passed away before you could get too attached to her’ This beggars belief. I am so very sorry.
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Mary, I am so sorry for the loss of your baby girl. I had similar happen to me but it was during pregnancy. I also got a lot of at least you still have one.
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Wow… this brought a knot of past memories to my stomach. My youngest son was born with a club left foot (talapies). The looks that I would get when I went shopping with my tiny 6 week old baby in a full leg cast from hip to toe were… shocking to say the least. To the point where close to tears every time we ventured out, I wanted to make a sign to hang from his pram “I am not an evil mother! I didnt break him, I am helping him!” He is now 3.5yrs old and still wears a brace (think similar to your cast/broom, but with boots and a steel bar) every night. I have to help untangle him from his blankets every night. The positions he sleeps in brings me to tears sometimes as I wonder how on earth it is comfortable for him. The toilet training was extra difficult trying to maneuver him, the very early mornings to go to him as he couldnt get out of bed and walk.
Of course there were the platitudes also (from others AND myself). We too have walked past the many wards of the children’s hospital and I would think how much ‘worse’ things could be, that I should be thankful it isnt a more dire situation. It wasnt until I said this to my mum one day, she said to me ” but this IS your worst, this IS your dire situation, this is what YOU are having to deal with”. It was a light bulb moment. I could be upset that I didnt get to experience him as a ‘normal’ perfect, healthy little baby. That yes, things could be worse, but it was ok to feel sad for the things he/I/we had had to go through.
Thank you for writing this and know you are not alone x
{photo: after a series of casts and a tenotomy, this was my little boy’s first set of boots and bar… which he still wears every night 3 years later}
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Hi Tarn
Your little boy is gorgeous! I used to hate going out with my daughter in her cast too – once, someone actually yelled at me, ‘What did you do to your baby?’ as if she thought I had somehow caused an injury to my daughter which caused her to have to be in a cast. It was the worst day of my life.
And I agree, giving yourself permission to be upset about what you are going through, instead of feeling as if you have to be strong, is hard to do, but once I did it, I felt incredible relief.
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Tarn, I had the exact same experience as you! My 10 month old son has talipes on his left foot and after having his boots on full time for 3 months after a series of casts he now has them at night until 4 years old. It was horrible the looks we got whilst he had the plaster on people often asked if his leg was broken. It was difficult as a new mum at 25 years seeing my 4 week old scream whilst being plastered and listening to him howl whilst his tendon was cut but you learn to deal with it quickly. I give myself the ‘at least’ talks though. I am lucky he is such an easy going, happy and healthy bubby in every other way plus now his foot is fantastic – just needs to stay that way!
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My girlfriend and I had our daughters 20days apart. her daughter was the eldest and had the same problesm as natasha’s daughter. Her casts were neon green and pink. My girlfriend found that people would constantly be judging her. One day when we were at the supermarket a woman walked past and came back for a second look then said to her friend “Oh my God, what the hell happend to that baby?…shes got two broken legs…makes you wonder about the Mum”….
Another time we were at the park having a picnic with our kids…I had 2 older daughters and my friend had an older son. She had her daughter laying on the picnic table which was quite safe as with the cast there was no way she was going anywhere. Her son suddenly took of running towards the road so she jumped up and ran after him. This woman who was walking by saw fit to yell at my girlfriend and tell her that she didnt deserve to be a mother if she was going to be so irresponsible and leave a baby on a table as she could fall off.
Now I understand that under normal circumstances leaving a baby on a table is very much a no go but my girlfriends baby couldnt even move an inch..it was impossible.
People only see what they think they see. Without all the information you are so very wrong to voice your thoughts. Make your judgements and keep them to yourself should be the golden rule.
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Platitudes are hurtful because they try to trivialise or downgrade the hurt of a personal situation by people who are not experiencing the minute by minute hardships you are. With twin girls, one of which had hip dysplasia and was strapped into a harness from her 2nd day of life until 7 weeks old, missing the cuddly newborn phase with her and cleaning newborn mess off the harness, followed by a frightening illness for our other twin, I’ve found it’s the people with no issues of their own that are the most flippant, hiding behind ‘optimism’ as a reason for their lack of empathy. We don’t need optimism, we need understanding, help and a hug. Save optimism for those who seem a bit down about a bad day at the office. The worst platitude I’ve ever heard? Said to a mum with a dying child: at least you were able to have a child and have her in your life. Thankfully we were able to ask that person to leave….
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Penny- I wholeheartedly agree with you. Platatudes are so hurtful- when we are suffering. My daughter has alopecia – and no longer has hair, eyelashes and eyebrows…of course like many stories here its not life threatening but definitely life changing and frightening for her and me! Yet people couldnt help but say dreadful things… When really all I needed was a hug and support so that I could keep myself strong for my daughter. Sadly most people didn’t say anything or stuck to these platitudes.My worst was being told to “chin up because at least she isn’t dead”
2 Years on and I am still so hurt by that. And that was a careless facebook comment. Overall I also feel that the people who were the most thoughtful were ones who had no issues of their own, people who had experienced illness or ongoing medical issues with children or loss have had the life experience to know what to say or not say. I don’t understand this seeming “ranking” system people have for troubles….it isn’t helpful or helps you move though the pain. I also totally appreciate your point about ‘optimisim’ I have struggled with some people who seem to feel the need to try and force optimisim upon me…this nieve idea that thinking happy thoughts will make these rather large problems go away. Happy thoughts lighten moods, but once again it feels so careless when there is great suffering, and it is a paticular suffering mothers feel
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It must have been terrible for you! My husband’s sister had the same thing, many years ago, so now I know what his poor mum must have gone through. From what I can see in the photo, your daughter has a cute smile, and hopefully she’ll continue to keep smiling now the cast is off.
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Hi Lizi
Yes, she did manage to keep smiling, even in the cast. It was the one thing I used to remind myself of each day (and give myself a platitude I suppose!) – if she could keep smiling in the cast then the least I could do was to try to do the same!
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I’m the mother of a gorgeous 3 year old boy who was diagnosed with an uber rare lung disease at the age of 6 months. Since that time he has been on continuous oxygen via nasal prongs 24/7. We get stares and numerous platitudes as well so I TOTALLY get where you are coming from.
There are 2 things that have really resonated here,
1. We are still grieving for our perfect baby that is no more, our hopes and dreams for our children while still there, have had to change significantly.
2. Yes we carry on and we do it. Yes its bloody hard!! People don’t see our daily struggle, they just see us out and about and ‘coping’ so thats why I guess they think we are some kind of super-mum.
So glad she’t out of the cast!
Love to you all. x
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I’m with you Natasha – real empathy would be great.
I have a beautiful son who has high functioning autism. I don’t think people realise how they discount the challenges faced by me and my husband every day when they make comments like “At least he isn’t severe” or “You’re so lucky he is so clever.” or “have you heard about that pill that is curing autism?”
I’m glad your daughter is doing well!!
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Gotta love the autism “cures”! We get the antibiotics and the probiotics mentioned quite a lot when talking with people about my granddaughter’s autism.
My very ‘favorite comment was one we got when my granddaughter, who was non verbal when she started school, turned out to be able to write quite fluently, “yes, the slow ones are always good at one thing”. Gee thanks, that ignorant comment is such a comfort.
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As someone who naturally gives platitudes I find this fascinating, thank you Natasha.
I suppose I try to put a positive spin on every situation, including those in my own life, and it spills over into conversations where it really isn’t appropriate.
I used to feel pretty defensive about it, but after reading quite a few articles with this slant (about different hardships) I completely understand why people hate platitudes. I’m really trying hard not to brush people off with mentions of being brave or strong or doing a good job or it could have been worse.
Glad to hear your baby’s cast is off xox
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Oh Natasha, sounds like you have had a rough few months.
I do completely understand about the platitudes, and I think some people say these things to make us feel better, to try and put some perspective in place.
When we found out we couldn’t have children naturally, and then through 8 rounds of IVF, I frequently heard “Cheer, up, it’s not like you have a brain tumour or something”. Which didn’t cheer me up. The emotional pain of infertility is not something I would wish upon anyone, let alone the physical toll.
And then when my son was only 8 months old, I was diagnosed with a brain tumour. My type of tumour is benign, so even then I had people saying “You are lucky it’s benign, it’s a good tumour to get”. Ummmm, no. Luck would not be getting a tumour at all, particularly an inoperable one that has ultimately made me very ill.
So having had these experiences, I know that whatever you are going through at that particular point in time, is what is important to you. Whether that be a sick child, cancer, IVF, diabetes, a bad cold, or even man flu. We shouldn’t dismiss people’s feelings and emotions surrounding these events as one simply doens’t know how it is affecting them, and at what point their coping strategies may just crumble in a heap.
For the record, the emotional pain of a negative IVF cycle was far worse than finding out I had a brain tumour, and the sense of hopelessness and loss of identity that infertiliy brought was more destructive. Although the anxiety associated with living with a brain tumour is not pleasant. Either way, I just keep taking one day at a time, take the good with the bad. That’s all any of us can do.
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Hi Oopsyboops
I think you’re right – most people do say these things to try to make us feel better and to put things in perspective. Like your experience with IVF, I did find that my daughter’s situation became the most important and absorbing thing because it took up all of my time and effort and energy and so I found it hard to get any real perspective on life at that time. Thank you for sharing your story – I was worried that people might take what I had written the wrong way and think that I was complaining about the support that people were trying to give. I’m glad you understood what I meant, from having been in a similar position yourself.
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Janet I’m with you on the brain tumor front. Twelve months ago I was diagnosed with one, then in December a second was located. I hear about how ‘lucky’ I am all the time. I don’t feel very lucky, in still coming to terms with my diagnosis. Other well meaning loved ones have told me to ‘forget about it’ That one makes me laugh!!
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Hi Sue, welcome to the Mamamia brain tumour support community. There are a few of us on here, both patients and carers, so you’ll get lots of empathy and support from us (and even an inappropriate head joke if you want one!)
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