Who sees the hidden young carers?


As her brother climbed awkwardly into the swing she held it still for him as best she could before gripping the chain and gently pushing it forwards and backwards to keep him happy. For all her brother screams and attacks her and makes her life challenging she never stops wanting to help him and support him. She pushed that swing with all her might (he is 21 pounds heavier than she is) until he tired of it and wanted off.

 
The only one who noticed was me.

 
This is just one example of young children who are living their lives as young carers hidden from the eyes of so many around them.

 
Who sees the hidden young carers like my daughter?

Just days before her brother was having a difficult night. He has complex medical and developmental needs and is unable to communicate using speech. He was distressed and agitated and it was taking both myself and my husband to keep him safe and calm. He had just had a difficult meltdown where things had been thrown and broken and as he gradually calmed we were sorting out the mess and chaos surrounding him. As one of us cleaned up broken glass the other went to check on food that had been quickly left cooking downstairs. On my return I could not find my son in his room and neither could I find my daughter. I stood for a minute when I heard a noise I had not heard for days: children laughing!

His sister had decided to run her brother a bath to cheer him up. She had made sure the water was the right temperature and put in his favourite toys and here she was sitting on the toilet beside him checking he was safe like she was suddenly ten years older than her true years.
The only one who knew she had done that was me.

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Who sees the hidden young carers like my 8 year old daughter?

 
Another night recently my husband had popped out for a bit. My son had been bathed and both children were in their nightclothes when my son suddenly began throwing himself down the stairs screaming hysterically. I ran to him and held him tight as I tried to settle and calm him. His anxiety was at crazy levels and he was inconsolable. He was making so much noise I never heard the front door open and I never saw my 8 year old leave the house in just her pyjamas. The first I knew was when my son pulled me to the stair window and my heart missed a beat seeing my daughter the other side of our street closing someone’s front door. The second that door was closed her brother resumed his flapping and clapping like the world was suddenly back to being right again. When I spoke to my daughter later explaining how leaving the house is dangerous she replied ‘My brother needed me. I was only trying to help him.’ (As a side note I live in a very quiet side street and I am fully aware the door should have been locked. Hindsight is a great thing!) 

I was so glad no-one else saw her and I know she won’t do that again. But it still leaves the question who sees the hidden young carers like her?

 
There are young carers groups out there. They do a wonderful job for many young carers. Yet there remains so many young carers like my daughter who are ‘hidden’ due to a number of reasons.

 
My daughter is not recognised as a young carer because we are a two parent family and it is deemed her level of care for her brother is not ‘substantial’ or regular enough.

She is not recognised as a carer because she herself has some needs and it is deemed that due to these needs she is not able to care for her brother.

Until recently she was not considered to be old enough to be a young carer.

It was felt by professionals that we should not allow her to take on the caring role that she herself has readily and willingly taken on.

 
These are just a few reasons why young carers can be ‘hidden’.

 
Statistics say there are around 700,000 young carers in the U.K. That’s the ones who qualify as young carers but what about all the other precious children who are doing more than they should for a disabled or ill family member and no-one sees or knows?

 
I see my daughter so at least I can be there to support her and thank her even if others don’t.

 
There are 13.3 million disabled people in the UK. I wonder how many of them are being cared for today by a hidden young carer?

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The Life Of An Autism Sibling


In the back hall of a church she watched as her brother climbed a toddler slide. As he sat at the top of the slide flapping he lost his balance and fell off. He was shocked and shaken as he laid there confused and hurt.

While the adults checked him over his sister ran around the room looking for all his favourite teddies, then sat beside him stroking his hair and whispered: You are ok. Don’t be sad. You are ok.
She is smaller than her brother, weaker than him physically, and much more timid in nature.
Yet she is strong. 

She is the sister of a child with autism and that is something very special. 
She copes with screaming and has learnt to be a peace keeper.

She copes with a brother who is controlling and she has learnt to compromise.

She copes with a sibling who rarely sleeps and she has learnt to rest as and when she can.

She copes with the unfairness when her sibling does not understand rules and she has learnt patience and maturity beyond her years.

She copes with aggression and responds with peace.

She copes with his iPad on full volume and responds by showing him how to plug in earphones.

She copes with people staring at him and she smiles at them and puts her arm around her brother in support.


She copes with getting less attention than she deserves and has learnt to play herself to cope.

She instinctively knows and understands now when he is experiencing sensory overload and leads him to a quieter place.

She opens snacks for him because she knows he does not have the co-ordination to do it himself.

She has learnt that he can not join in her games and copes with that disappointment better than many adults would.

She fights her brothers corner.
She keeps him safe.

She changes the TV channel when he screams at a show he does not like.

She even makes hand dryers work for him because she knows how much he likes them.

The life of an autism sibling is not easy. They are often over looked and expected to cope. They miss out on so much because of the needs of their sibling and have to adjust to family life dominated by an invisible condition. A lot is expected of them beyond what other kids deal with.

It takes strength to cope when your brother screams daily. It takes strength to understand certain toys can not be bought because they pose a danger to your sibling. It takes strength and maturity to realise and accept that having friends around to play may be more difficult than it is for others.

To watch your brother or sister struggle with something you do easily and not boast about this, to stand up for your sibling when others mock them, to cope with public meltdowns and not be embarrassed: you are amazing! 
Let’s hear it for the autism siblings! You all deserve the lime light for once!

A moment of beauty at build-a-bear

Kids are so full of surprises! Just weeks after Christmas and the usual delude of new toys and games and what was my daughter wanting to play with? A teddy bear she has had for years! Now reincarnated with a new name and involved in all sorts of fresh imaginary play; I knew what was coming next…

Mum, I can’t find Ellie’s clothes?

Imagine my confusion! Who or what is Ellie? Followed by the panic of realising I not only have no idea where the once-buried-under-the-bed-in-a-box toy appeared from but how did she even remember it had clothes? And she seriously expects me to just pull out this last seen in 2013 teddies coat and boots? What? Goodness, this mamma can barely remember the day of the week let alone anything else! We dug in the we-have-no-idea-where-else-to-put-this-stuff box to no avail and alas I began to wonder if these ‘suddenly in demand’ items she can not live without now could have ‘accidentally’ jumped into my car boot in the pre-Christmas clear out. Oh what an awful parent I am! I shall pre-book my daughter to that counsellor she is sure to need when older!

And sometimes, for our own sanity, we make a promise we know our bank account will live to regret!

Ok, this weekend we shall take Elizabeth, Ellie, ..whoever, to the bear shop and buy her an outfit. Ok?

And breathe!

Well until today when that eager eyed baby woke and ran into my bed to announce today was the day her bear was getting new clothes! That’s it, NOTHING is ever getting thrown out again, you hear me!

So we excitedly (well reluctantly on my part!) got prepared to go. And this is when it gets complicated! As well as my way too attentive daughter I also have the honour of being mum to my son who has complex needs. How in the name of whoever am I going to get this boy of mine into build-a-bear? It’s not like you can buy a bear and get a free burger now? And the last time I checked they had no lift or hand dryer? So that’ll be a ‘no chance mum’ as per!

Flip! Could Elizabeth, Emily, sorry Ellie not become a naturist for a while until you find some other old toy? That look…well if you are a parent you know what I am referring to…it said it all!

So let’s just get this over with!

You are kidding me? Really?

My son, aged seven, who has never in his life touched a teddy, who has yet to speak, who has no idea about imaginative play…is standing over a basket of teddy ‘skins’ and has ‘chosen’ one he wants! STOP!

He is in the shop. He is not screaming. He has not wrecked the entire place.

Now THAT was worth coming!

Now how do I explain this ‘teddy’ needs stuffed by a loud, spinning machine full of white ‘stuff’? He doesn’t know what a teddy is? Or maybe he does?

Well he waited, and he ‘chose’ an outfit, unsurprisingly one that closely resembled his own beloved school uniform (he doesn’t care it was a skirt) and a red bag to match. Meanwhile I dreaded to imagine what his sister had seen! Have you seen the prices of these clothes? I pay less for my own clothes and I can assure you they are a whole lot bigger!

She settled on…the exact same uniform, a pair of pyjamas…and the added ‘accessory’ of…a wheelchair! She announced in front of the entire shop that her bear just wanted to be like her brother. And how do you argue with that?

Ok, mr build a bear, your prices are crazy, your appeal far too great, your choice better than the average high street shop for ‘real’ people, and I never want to visit for a good while until my bank account recovers…

But I have to admit, you gave me a moment of beauty today. I even hasten to say a miracle. The boy who has no teddies now has one. And he hasn’t let it go since! And you ‘normalised’ using a wheelchair for a child who sometimes struggles at how different her brother is.

So cheers! I owe you one!

P.s, a coffee shop to give me a moment to recover may not be a bad thing! I’ll leave that with you 🙂

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Conversations with a six year old about disability

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We were sitting waiting in the car; unassuming, ordinary, an almost everyday occurrence. But the conversation was anything but. I have replayed it in my head a few times now because the insight, compassion and sheer innocence of it all was something very special.

Children see the world so differently. And there is so much we can learn from a six-year-old.

Mummy, we are parked in a wheelchair space” she piped up, so matter of factly.
I know honey, it is ok. Isaac is with us (her twin brother who has a number of disabilities) and I have put the blue badge up.”
“But you have not got his wheelchair?”

That is ok too sweetie as not everyone who is disabled uses a wheelchair. Isaac is disabled but he does not use his wheelchair sometimes. The picture is just used to tell other people the space is for disabled people.”
Well that is a bit silly! I don’t like that sign mummy because it is not right. Why have it for cars? They are not disabled. And it is not right on the toilets too! Wheelchairs don’t use toilets, people do!”image
“I know. But they use it as a sign to mean disabled because wheelchairs are something lots of disabled people use. And on the toilets it is just like the sign for woman and men and changing babies too
“Well the baby change one is wrong too! My brother is not a baby and you take him into the baby change too sometimes. Do shops not think that sometimes big children still need changed and they are not babies? That makes me sad because my brother is not a baby.”
I agree. Sometimes it makes me sad too darling. But it is just a sign and nobody means it to upset people.”

There was a pause while I sorted out her brother who was upset and in doing so I knocked over his parking badge. My daughter noticed and continued…

“Well, if I was disabled I would not want a blue badge…”
Another pause while I wonder how I should reply to this but before I can she continues…
“I would want a pink one! Girls should have pink ones!”
I smile to myself but secretly think she has a point.

“Is the car beside us disabled mummy?”
“Cars are not disabled darling. It is people. And yes either the person driving or someone in the car is probably disabled as they are in a disabled parking bay just like us
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“What disabled do they have?” (I should probably correct her grammar but decide that might interrupt the conversation too much)
“I don’t know. Sometimes you can tell quite easily if they need lifted into a wheelchair or if they use crutches but sometimes, like Isaac, you can’t see what someone is struggling with. There are lots of disabilities people can have.”
“But you can’t ask them can you? Because what if they are like Isaac and they can’t talk?”
“That is true
.”

The rain has stopped so I decide to get both children out the car and into the supermarket but my daughter still has plenty to say. As I hold their hands tightly my daughter raises another valid point.

“Why are all the other trolleys next to the parking bits but the one for Isaac always so far away? Everyone else can walk but he needs help.”

Good question!

imageAs we eventually find the trolley we need and strap her brother in she has some more observations.
“People that help like you mummy are very strong. And I think you need to grow too! The handles are very high up even I can’t reach them!”

Another valid point. This child will go far! She sees things most adults don’t.

She proceeds to carry on talking and questioning and commenting as I try to think what essentials we need. Meanwhile her brother flaps and makes noises and presses the same noise on his iPad continually. I finally make it round the store and pay for our goods.

On the way back to the car the rain has got heavier and my little blue-eyed six-year-old decides having a special bother is actually a good thing.

“At least we got to park near the shop so we don’t get wet. I don’t think disabled people like getting wet so that is why they have spaces near the door.”
She isn’t quite finished…
“If I had a shop I would have spaces for people with children, spaces for disabled people and spaces for people like you mummy.”
“Spaces for people like me?”
“Yes. Ones for tired mummy’s like you
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I am not too sure what to say to that idea but I do think it would be very popular!

As I drive the short distance home with them I am so grateful for both of them. Grateful for one who can talk, and question and discuss such subjects as disabled parking, changing facilities and suitable shopping trolleys and grateful for her twin brother who is making these subjects such everyday events and breaking down prejudice and taboos without even saying a word.

What does my six-year-old think of disability? She just thinks her brother is special. He has a blue badge, sits in a special trolley and goes to a different school. But he is her brother and she loves him.

Why does my brother have to ruin everything?

The nativity was done, the presents bought and the food all ready. When your twins are six they ought to be excited about Christmas Day. One of mine was. The other was totally oblivious to it all.

But we bought him gifts regardless.

The day started badly. Pretty badly to be honest. Isaac refused to come downstairs even though we had changed and dressed him (in his school t-shirt and jumper as he still refuses to wear anything else). So while Naomi was embracing the magic of it all and loving the fact she had received the very toy she wanted, there was a noticeable absence in the room. I should have suspected something. But I didn’t want to miss that magic of seeing my daughters face when she opened her gifts. Plus she wanted me there.
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It was all too late. Isaac was busy upstairs, in my bed by now, having a party of his own. His ‘gift’ was of his own making and the smell was overpowering. The bedding, his clothes, his body from head to toe, and anything else nearby needed urgent attention. So while I attended to a screaming, fighting child, a filthy room, and smelly clothes, I was missing out on my daughter’s special moments. Moments I will never get back. And her happiness at getting presents was tarred by the fact her mum was not in the room to share it with her.

‘Mummy, why does he do that?’

Stress, lack of attention, sensory seeking? Who knows really. He can’t say and I can’t mind read. It wasn’t a good start though.

He came down and saw her new toys and tried to attack her. Despite him having plenty of his own he showed no interest in any of it and started screaming again. Naomi wanted to defend her toys but having sustained quite an injury from her twin less than a fortnight ago (which still has yet to fully heal) she was scared. So she started crying.

‘Mummy, why won’t he leave my things alone?’

Jealously, lack of understanding, curiosity? Who knows. He can’t say and I can’t mind read. How do you support siblings when a child can be so unpredictable and violent?

Later on we went out to grans for dinner. He ate a bit then climbed on a bed in a room, as he always does. He was extreme sensory seeking (use your imagination here) and was not going to be stopped for anything. Finally he returned to us covered in sweat and pulled me to the kitchen. By process of illumination we found he wanted a pineapple. As he pulled the leaves off and played with them, despite having lovely new toys there to play with, his twin sister once again was curious.
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‘Mummy, why can’t he like toys like I do?’

Lack of imagination, developmental delay, sensory issues? Who knows. I can’t always answer as eloquently as I should.

We returned home and I prepared a light tea for everyone. Lots of snack foods and treats. But no meal is complete for Isaac without mashed potato and gravy. And I had not made any of that. And because it was laid out as a buffet his plate was sitting empty (so to him he wasn’t getting any. Why did I not think about that?). He went crazy! Cue screaming, crying, food flying, crockery smashing and a huge amount of stress. So maybe I should have made mash and gravy but he had already had it twice that day and it was all food he usually loves. Surely we can have one mealtime without mash and gravy? I was exhausted, angry, stressed and frustrated. I walked away.
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The son screamed and lashed out more. The daughter cried. The husband’s stress levels were at boiling point.

I returned to comfort my daughter. Through tears she snuffled,

‘Why does my brother have to ruin everything?’

I met that question with silence.

We tried. We failed. I’ve came to the conclusion tonight that Christmas may be best done in private with my daughter in her room. It isn’t fair on her, on us, or on her brother. I have 365 days to work out how to make it better for her.

It starts with the tree coming down tomorrow.

Because a disabled child is a disabled family…

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Firstly, I want to stress that I am blessed. But secondly I also want to say that I still struggle.

I struggle with everyday things like taking my children out, buying food when we need it, cooking a meal, juggling hospital appointments with picking up children from school and nursery, dealing with the piles of paperwork and phone calls that have to be made whist functioning on just a few hours sleep, and trying to give both my children the time and attention they need.

My children are both disabled and therefore my entire family is disabled. That may seem a strange thing to say so let me explain what I mean.

This week my children have had some time off again for a holiday weekend. Like parents around the world I want to spend time with my children and enjoy them while they are young. The weather was not in our favour one afternoon so I thought I would do some basic baking with them. They are both 5. One is at school and the other nursery. How hard can it possibly be to make some chocolate crispy cakes?

Nothing is easy when you have a disabled child. My daughter was super excited about baking. My son could see it was something to do with food when the cereal packet came out the cupboard but that was all he understood. I explained the process to them using photographs (google is my friend) and we filled a mixing bowl with some cereal. And then everything went rather crazy after that! Because his sister had poured cereal into a mixing bowl and not a cereal bowl; because she wasn’t sitting at the table to eat breakfast like he expected from seeing the cereal out; because he had no idea what we were doing. So he lashed out. He screamed, bit himself, banged his head on the floor and threw everything about he could get his hands on. What should have been an enjoyable family activity was now becoming yet another casualty of my sons disability. Once again his disability was spilling into the entire family. My daughter could not continue baking, I could no longer give her attention or help and my son was seriously struggling. In the end Naomi made the quickest crispy cakes ever and Isaac sat and ate a bowl of cereal with some chocolate drops in. I made the mistake of trying to drop some melted chocolate in for him. Never again! The photo shows a smiling girl with a cake. But you just don’t know what else went on that day just to achieve that. One disabled child not coping and the entire family struggles.

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Then there was a 9am appointment for one of the children. That is quite common for us. Appointments in general are so common it is rare to have a day without one. But certain times make negotiating the logistics of family life a real challenge. How do you get one to an appointment and back to school 13 miles away and the other to nursery a mile in the opposite direction at the same time? Any family having to juggle hospital, clinic and therapy appointments with other siblings, work commitments and family life knows this dilemma. The disability of one child has a huge knock on effect on the others children and the parents. So often parents of disabled children are unable to continue working because the level of commitment needed to attend these things impacts on working life so much. A disabled child becomes a disabled family.

Then there’s the places you just can’t go to because your child is disabled. Yes more and more places are wheelchair accessible but that doesn’t make them autism accessible, or suitable to take an ill child or a child prone to seizures or public outbursts. Or even make them safe for a child with developmental delays or the ability to escape within seconds. As my children grow the list of places I can take them both to gets smaller. Holidays make that worse as everywhere is busy, noisy and unpredictable. Taking them to the local grocery store just to pick up basics takes military planning, praying the one (yes you read that right just one) disabled trolley is available, the music isn’t too loud, the layout has not been changed and the checkouts are not too long. I can’t just tell my children to follow me, or hold their hands or ask them to help. Picking up a pint of milk is as hard as an army assault course when 9 months pregnant! It is exhausting. One disabled child is all it takes for an entire family to be affected.

Emotionally disability affects everyone too. Parents worrying about test results, operations, high temperatures, infections, the next therapy sessions, the fight for the right services, the concerns about the future. Brothers and sisters torn between wanting time with their parents to support them whilst realising that far more attention has to be on their sibling. Children often becoming young carers long before they should have any real responsibility. Young ears hearing things that no child should have to hear simply because there was no child care to go to and so once again they had to ‘tag along’. Children seeing adults cry and not knowing how to cope with this weight. Brothers and sisters coping with their toys and valued possessions being destroyed by a sibling who never seems to get told off, or who doesn’t seem to care. Children afraid to tell their parents they are being bullied because they don’t want to add to the already heavy burden that their parents are coping with, or worried about asking for money for a school trip because they know money is tight, or even struggling with feelings of resentment towards all the attention the disabled sibling seems to get. That balance is often impossible for parents of disabled children to get right. Whilst one child might be registered disabled, emotionally everyone in the family is disabled too.

One child wakes up screaming and often the whole family gets little sleep. One child is sick at the dinner table or throws the meal across the room and no-one gets to enjoy a meal. One child refuses to go to school or wear the uniform, every child is late as a result. It is a ripple effect.

We need to support disabled children. We need to continue to spread awareness of disability in all it’s forms and continue to invest in services, therapies and medical equipment. But we also need to remember the parents and the brothers and sisters too who live disability on a daily basis. They might look fine but remember…a disabled child is in fact a disabled family. And they ALL need our prayers and support. Thank you!

The most beautiful girl in the world

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Have you ever had a stranger do something so incredibly awesome it just makes you want to cry? I have. And it happened just this week. I pray the kindness and power of what the stranger did for me and my 4-year-old daughter impacts you the way it has impacted me. Some people make a mark on others lives that can never ever be erased.

We had went out as a family to a local place to eat. Everyday events like this have their challenges for every family but more so for mine due to the complexity of my sons needs and the fact we need to balance his needs with that of Naomi’s and somehow all need to get some chance of eating at least part of our meal. We could have chosen anywhere to eat but that night we opted for the local carvery. No waiting to get orders taken, the kids can see what they want on their plates and we can attempt to eat together without the usual demands for nuggets and fries.

Naomi is a challenge to feed in such places as her diet is so restricted and no-one wants a battle or tantrums in public. But a little mashed potato, a few selected vegetables and a little gravy got her picking at her dinner while quietly colouring in. Isaac had his usual loaded plate and was firing handfuls of food into his mouth like a child who had never seen a dinner before. I promise you they are twins but you would never believe it to see them eat!

However, even with food, Isaac’s attention span can only last a limited time and he was soon clambering over dad with food all over his face and fingers, wanting off to run around. A knowing look and wink of the eye was my signal that I was willing to take the strain tonight. To Isaac’s flapping, smiling delight he was getting mum. He brought a smile to my face even though I was missing out on a hot and delicious dinner yet again. But then I glanced at Naomi and my heart sank. Eyes bunched up with tears ready to explode at any minute, and a tender voice so timidly saying through her beautiful blue eyes ‘I want you to stay mummy’. Oh. This isn’t fair. They both need me so differently. And whatever I do one of them is about to protest publicly. I really must get that cardboard cut out of myself done. It’s the only way I can think of being in two places at once. And tonight I so want to be with both my babies.

I chose Isaac but prayed my daughter would know she wasn’t being rejected. I kissed her cheek quickly as Isaac vanished out of sight. ‘Come find mummy baby when you have finished your dinner.’ Oh Lord, this little girl is going through so much. She shouldn’t have to live like this. No wonder she has such tangible confidence issues and low self-esteem. No wonder she never wants to let mummy out of her sight. It must feel to her like she is second best, her wants and needs don’t matter, mummy prefers her brother. None of this is true but how do you balance the high needs of one child physically and communicationally with the high needs of the other socially and emotionally? Who is going to help the siblings of children with high needs? How can I let her know she is beautiful, clever, wanted and loved when my actions tell her I am walking away to see to the needs of her brother? Dad reassured her and encouraged her but it just wasn’t enough.

So my eyes were on my son but my heart was with my daughter. And God was about to use a stranger to impart a truth into her little life that would go deep into her inmost being.

As Isaac ran up and down in a little garden outside a group of strangers watched on as they drank and ate and talked. You could hardly ignore Isaac’s wild flapping, whooping noises and funny walk. But one young couple were watching him with smiling faces and pleasant eyes. And then little Naomi appeared and held my hand in the warm sunshine as we stood side by side watching her energetic brother. The smiling strangers asked if it was her brother to which she smiled and nodded. They invited us closer and handed her two coins, one for her and one for her brother. So very very kind of them. And without prompting Naomi said thank you.

We exchanged a brief conversation that her brother had special needs and that the children were twins. The lady reached into her handbag and fished for something. I hoped it wasn’t more money. She found what she was searching for and beckoned Naomi nearer. Looking my precious daughter in the eye she spoke lovingly and tenderly to her as she asked her a question.

“Would you like to see a picture of the most beautiful girl in the world?”

A whispered “yes”

To which the stranger opened a little love heart make up mirror and showed Naomi her reflection. To see my daughter smile and touch her reflection as she realised this stranger was talking about her was incredibly touching.

“You are so beautiful. Inside and out”
“Every time you look inside here remember you are special”

The words of a stranger. But exactly the words of God as well. Not to mention the exact words she needed to hear that day.

The lady gave her the mirror to keep and Naomi has barely let it go since.

I thanked the lady and her partner for the coins, the gift and the joy they had brought to my heart. But how do you truly thank a stranger for saying exactly what your 4-year-old needed to hear? I thank God once again for putting people across our path in exactly the right timing. And I thank God that the next time we go out it is mummy who will be staying with Naomi too.

I believe we all need to hear this message too. We can all feel left out at times, or second best or not loved. And every one of us needs to know that we are beautiful inside and out. We are special. And Naomi now loves to tell me “Mummy I am the most beautiful girl in the world”. Yes, baby girl, you are indeed.

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