It’s not you, it’s me and my guilt

It wasn’t until recently I realised I still carry a lot of guilt about what happened last year even though it was all completely out of my control. I feel guilty and that guilt is now impacting how I am as a mother and a person. I don’t like it and I am slowly picking it all apart and processing things so we can all move forwards as it’s not doing any of us any good. For those of you that don’t know our story, you can catch up here  The pain of 2016.

Guilt is a self inflicted bully. It makes you do things you probably wouldn’t normally do and it tricks you in to making yourself feel better because of these actions. I went through a phase of seriously over spoiling Noah. I had slept by his side on a hospital bed for so many weeks last year. Weeks that eventually changed to months. Every time I opened my eyes there was my beautiful two year old….. covered in drips, drains, tubes, morphine pump. He was constantly surrounded by doctors, nurses, specialists.  Every day I wondered if he was going to be OK, every day I questioned whether he was going to die. I felt awful that his sister, who relies on me so much, had been abandoned by me with no word of warning. Now I know you can’t plan and prepare for the unexpected but she was constantly in my thoughts because I knew she was struggling and fate had just removed me from her life for a while at the worst time possible. Three operations later and he is home, thriving. But the memories stay with me and have often triggered the anxiety I now struggle with that I never had before. So I fell in to a short time of spoiling him, doing everything for him because it eased my guilt a little bit each time. My heart and head were so happy he had survived everything that I felt this need to give him the world, or at least some extra toys and treats.  However I soon realised this wasn’t good and it certainly wasn’t healthy or productive for any of us. I risked changing him and his personality because guilt sat there poking at me. Guilt also made me feel stupid for feeling guilty! After all it wasn’t my doing that he became so ill and needed operations. The brain is a crazy thing sometimes.

Reflecting on things like this are never easy but they are often necessary. I have been reacting a similar way with Eliza. I do too much for her. I know that now. Last year took a lot away from us all as a family and now we are back together I find myself taking over tasks that she can do herself. This morning I did her shoes up for her. They are one strap velcro and she can do them herself. The other day I tidied up around her whilst she sat and watched me yet I know she can tidy away her things. So why do I do it? Little things like this have just somehow fallen in to our routine and I just take over things that she can or could be doing independently. Obviously, being Eliza, she will let me because she trusts me and we are so close (perhaps too close to notice things sometimes) she will simply assume it’s a mum job and not question me. As above with her brother I think a lot stems from guilt that I left her for so long last year. I’d barely left her before ever and because I had no choice it made it so much harder to deal with. But then the additional or knock on guilt takes over – I’m doing too much for her, I’m taking away independence, I’m not being the mum I was before all this happened. The vicious circle starts and I need an exit. We have become stuck in a rut. Her because she lets me lead and me because I’m controlling things. I’m trying to make up for last year by over compensating and again chipping away at that guilt that sits there. I’m working through the guilt and trying to take a step back and let her be the feisty, capable diva I know she is. I’m not helping her and I know that but I am working on it and it takes time. I am human, I make mistakes, I have feelings, I feel pain. I too need processing time for certain events because life isnt all about smiles and good times, it often throws a lot of shit at you all in one go. I said before in a previous blog about something I came across via a friend regarding the future – That the best thing we can do for our children is to teach them how to live without us. It’s not morbid, It’s not something to be feared. It reminds me that actually that is what I do and need to keep doing. We won’t live forever and one day these children will have to live without us. It’s vital that I snap out of my guilt stricken behaviour for the sake of both children but especially for Eliza who needs me in such a different way to her brother.

oijlknm

Working towards warm coffee

I love those days where I get to relax and switch off. Run myself a lovely bubble bath and lay there for ages, choose a book to read at leisure and ignore the phone if it rings. Randomly call a friend to see if they are free and want to meet for lunch or go shopping for shoes and enjoy life at a pace that I choose. Spontaneously jump in the car and go and visit family or even have a nap in the afternoons or take a yoga class. Ahhhh self-care, looking after me! These much needed moments to reboot my brain, process things and give my body a rest. It’s how I take care of myself……….. WAIT, that’s not quite right. Oooooh brain, what are you doing to me? Did you forget we have children, a house and endless appointments and a million and one things to do.

Let me give you an example of a typical day morning in my life… (even I didn’t realise how long my day was, this blog could become a series discussing 24hrs so let’s stick to morning)

Dragging myself and kids out  of bed early (ish), get them cleaned, dressed, fed and one ready for School remembering the packed lunch, reply to the fifty pieces of paper sent home by School the day before about photograph day, assembly, that I understand about the current bug going around, blah blah blah…… Throw in the bag PE kit, check I signed the reading book schedule, did I send money in for that School trip?, Should I send it again because I really can’t remember. Is today the day they go swimming? Has she got her shoes on? Answer the same question around fifty times “Can I have my kindle please” with the same reply “No because it is time for School, Kindle is for later when you get home” and listen to endless whining because that is the answer she really did not want so she starts with the “Oh but Mum pleeeeeeeeeeeeeeeeeeeease just for five minutes…..”

*School bus arrives and breath, that’s one out of the house for 6 hrs*

Chase the giggling toddler around to change his nappy because he thinks it’s hilarious to run around all stinky. Answer his constant request for cake/sweets/chocolate with a firm ‘NO’ for what feels like hours, build a Lego tower with him thirty five times to have him knock it down thirty five times because he likes that, tell him numerous times not to stick his fingers in certain places, please don’t feed the cats for the fifth time today, can we not throw crisps on the floor please and reply to the million times he asks “Wot dat mom?” as his thirst for knowledge grows. Phone School and remind them I will pick the girl up early for an appointment later because I forgot to write in her communication book about it and then ponder the forty two mile round trip later for one five minute appointment. Did I put the kettle on yet?

Put TV on with rubbish cartoons that will keep him busy for a few minutes so I can get the laundry started because if I don’t then soon we wont even fit in to the room with it. It’s out of control, I mean seriously how many clothes do four people need??? The washing machine must hate me, it never gets a rest ever. I sympathise, I know what it’s like constantly on the go, I feel it’s pain…… Oh, wait I’m now giving the machine love, understanding and feelings. *Sleep deprived mum here* Make a cup of coffee. Unload and reload the dishwasher, sweep the floor because my children’s mouths are clearly not big enough and more cereal ends up on the floor than in bellies. Plug in the kindle to charge or they will be hell to pay later. Stand on Lego and yell (not compulsory yet seems a daily part of my life) and it won’t be the only time it happens. That stuff gets everywhere, how did it even end up in the kitchen! Empty the bin but first taking out dolly, random shoes, the TV remote and my phone that the boy has put in with his attempts to be helpful and “I tidies up looksie” whilst praising him for lovely thoughts but explaining that we kind of wanna keep these items.

Find a toy that occupies the boy and offer him a snack so I can now go on the phone to chase up the missing appointment letter for his sister that they insist has been posted twice, call the pediatrician and get an appointment to discuss why the girl wants to eat paper, sponges, play doh……. they soon get the idea and an appointment will be posted (we’ll chase that in a few weeks of course). Call Doctors and order medications, call family back because they called like six weeks ago and probably assume I either moved or died, answer the phone to people trying to sell me insurances, new boilers or have I had an accident in the last however many months and would I like to claim something blah blah……. Answer the door for parcels and packages that are rarely mine but because they neighbours all work (and the postman knows I am always home) my stairs become a temporary post depot storing beautiful wrapped bundles of what feels like shoes, toys, car parts and the occasional mysteriously shaped package that takes up far too much of my mind as I wonder what it is. Down that cup of coffee I made two hours ago. Who cares if it is cold, it’s caffeine baby!! Chase boy around again having spent twenty minutes asking him “Where are your shoes?” and him answering “ummmmmmm” and throwing his arms in the air with a ‘who knows’ look about him before finding them in a plant pot because that’s where he decided they lived yesterday. I should get dressed, I’m not sure shopping whilst wearing ‘Harry Potter Rocks’ pyjamas are adequate or acceptable clothing for Aldi. Take the boy food shopping and secretly want to tie his arms together so he can stop grabbing stuff and putting it in the trolley because I really don’t need a pack of liver, a dog toy or aspirin…. actually leave the aspirin in the trolley as I am feeling the need for one pretty soon and it’s not even lunchtime.

You get my point right? As parents we lead such busy lives sometimes we don’t even get to think about self-care let alone act upon doing it. We forget. We actually forget to look after ourselves. In my house I am last to bath, last to dress, last to eat and I often sacrifice any free time I have to do stuff for or with the kids. I have 2 small people that rely on me to get things done so yeah I always put myself last. It’s overwhelming and exhausting just surviving each day. Self Care? I’m pretty sure I do it but the basic minimum level. A quick five minute bath on the evenings might be the first time I got to myself all day. So I set myself mini goals – longer bubble bath, read a few pages of a book, do some crafting or card making as I love it and find it relaxing. I try and give myself time to be me. It’s not always possible because life is so busy and I am OK with that. I manage. My kids are happy. There are clean clothes for them, food on the table and they are happy. We read stories together, have cuddles and it makes the busy days all worth it. My goal tomorrow is to drink warm coffee (even I am not stupid enough to say hot, never gonna happen as I have a busy day ahead so lets say warm #smallgoals).

Thank you for reading. This was part of a ‘Finish the sentence Friday’ post hosted by the fabulous www.findingninee.com/ 🙂

You can follow us on Facebook at http://www.facebook.com/LivingWithBloomingAutism/

What do you think autism looks like?

There are so many things you can say to a parent or carer of an autistic person. Sadly some of those things are inappropriate, cruel or rude. One thing that I hear far too many times is just ridiculous. I bet you have heard it too often too…

“THEY DON’T LOOK AUTISTIC”

What kind of statement is that? I really don’t understand why on earth someone would think this is a good thing to say. I am a member of a few parent support groups online and today I have come across no less than 11 different parents that have been told their child doesn’t look autistic this weekend alone! Why? What possesses people to say something so utterly crazy? What do they think autism looks like? I am baffled, truly baffled at why we hear this all the time. So here it is, let me show you what autism looks like….

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Shocking isn’t it? She looks so much like a ‘normal’ young girl (another thing best not to say “Oh but she looks so normal”). She’s not green, she’s not a giant, she doesn’t glow in the dark or multiply if she eats after midnight. She is simply Eliza, an autistic child. So again I ask why people think it’s OK to suggest she should look different because she is autistic?

You can follow Eliza’s journey on Facebook at –

http://www.facebook.com/LivingWithBloomingAutism

Has anyone noticed…..?

I live with a child that has moderate-severe Autism who needs 24/7 care and attention to ensure her safety and well-being. That child struggles with anxiety especially if I am not around, she is not happy when I go to work for my one night shift a week which is all I can do that fits around our life. She has no awareness of danger so social activities are stressful for me because I become more than Mummy, I become a risk assessor/body guard. It might be a wonderful day out for her because I planned ahead but it’s only gone well because I plan every scenario and in my head including a map of all exits, car parks etc so we have a clear route away should she needs it. Family gatherings are exhausting for me as I try to keep a balance of activities and interactions I know she can deal with but at the same time pushing her comfort zones a little and introducing her to new things so she doesn’t miss out and starts to accept that the world can’t always be one big routine, things happen. I’ve lost count of the amount of times I have spent hours tidying up after a meltdown because the room looks like we’ve been robbed or bombed! Or how many times I have mopped poo off the walls, and bathed her because of her smearing episodes in the past. I am her Mum, carer, cleaner, cook, driver, receptionist, risk assessor, teacher, nurse, comforter, hairdresser, laundry maid…. everything.

I am full of jealousy for those parents that talk about their exciting plans for the 6 week summer holidays because even now, in January, I am sat here planning how we will survive them and they don’t even start until July. I have to keep a decent routine because she will lose the routine that she gets at school, so I have 6 weeks of activities to plan for to keep her busy. Throw in to that mix her younger brother who turns 3 soon, it’s far from easy. I will sit here and watch Facebook posts full of days out where friends have been. Trips to places that my child can’t manage because they are ridiculously busy. Some trips I simply can’t do because of safety. There is only one of me but two children to take out and both needing supervision for different reasons and they always want to be at opposite ends of the park. So who do I leave alone? The girl with Special needs that has no danger awareness of roads or strangers or the little boy who is too young to be too far from me for similar reasons? So we don’t attend because it’s safer, not easier as I am sure a lot of people think we just can’t be bothered. The friends that know us and understand appreciate how difficult a ‘simple’ trip to the park can be. Believe me, it’s no fun sitting here witnessing what we miss out on as people post photo’s all over social media. BUT I know my kids and their needs, I also know my limits and to date I have never been able to split in to two so we have to pick and choose our days out wisely.

Apart from being mum, I am also wife to a husband that has mental health issues. He has struggled with depression for over 20 years and will be on medication for the rest of his life. Anxiety often makes his life even harder. Although he holds down a full-time job and generally lives a ‘normal’ life, his depression can impact us all as a family. On bad days he can get snappy easily at both myself and the kids. I have to become peace keeper and often keep the kids busy so he can have quiet time. I have to remind him to take his medications and order the next lot so he doesn’t run out. He loses stuff all the time and I mean ALL THE TIME. Passport, receipts for work, cables for his phone, wallet, shoes…. and it’s always me that has to find them. He moans if he runs out of clean socks or pants because he sees laundry as ‘the wife’s job’ without realising that perhaps I am up to my eyeballs in so many things, I haven’t quite got around to that pile of laundry.  His expectations can be high but his view of what he thinks I can manage sometimes is a tad much.He recently had a bad few days which resulted in a trip to the mental health crisis team. A medication tweak and he is much better currently but at the time it is stressful for us all. Whatever happens though, I have to plod on with life. I have become the glue that they all rely on to keep us together, to keep our level of ‘normal’ going.

One thing I have noticed is the messages and calls we get to check how things are going. “How is he today?” or “Is Eliza OK after the meltdown at ……” and a brief conversation puts others minds at ease that all is currently well. Don’t get me wrong, I am thankful for those messages and I know it means people care but at the same time I can’t help but wonder if anyone cares how I am doing? It’s not a selfish thing, there are times I sit in these calls where I am answering the questions and queries and as I put the phone down I am thinking in my head “Yeah, I’m fine too thanks”.

Has anyone noticed that I am struggling?

Has anyone noticed I am exhausted?

Has anyone noticed how stressed I am?

Has anyone noticed how lonely I feel?

Can anyone tell that I am sick of being the one that HAS to cope and hold us all together?

Because the sadness of it is that often, the carer is forgotten. The focus is always on the ones that are being cared for and that’s fine and very much appreciated BUT please don’t forget the carer. There are only a couple of friends that actually ask me “…and how are YOU doing with all that is going on?” and they know the truth. They know I am struggling every day and they know I have no choice but to keep going. After all, I am the glue aren’t I? If the glue starts to dissolve we all fall apart.

I’m not asking for sympathy and I am not asking that anyone suddenly bombard me with messages all about me. I just know how it feels to have that constant pressure to get everything done and take care of everyone else. You feel last, you feel unimportant and you feel really lonely. Perhaps next time you call someone like me, just ask them how they are doing too because I am sure it’s been a while since someone asked and they really will appreciate it.

 

 

Striving for continence

I don’t normally talk about something so personal but I thought it was worth sharing our experience as lot of children struggle with continence. Continence is something Eliza has always struggled with. She is seven years old and wears pull-ups both day and night. There have been so many hurdles to jump including fear of small spaces, fear of noisy hand dryers and just being in a place that is always different. Lets face it, at home it is easier as the bathroom pretty much looks the same but when you are out and about every toilet place looks, smells and sounds different. It has taken years and I mean YEARS to bypass all these hurdles and we have gone at her pace with the odd nudge forward if we thought she was ready. There was even a time when she was a ‘smearer’ and for months we went through a regular routine involving bathing and cleaning rooms. I’m going to visualize so many parents nodding because they know what I mean. For those of you that don’t, brace yourselves…. Eliza would smear poop all over her walls, her clothes, her face, the carpet and any other surface she could reach. Mainly sensory led we worked hard to overcome that stage and *touches wood* it’s been a very long time since we saw any of that. It has been a long process of reassurance, explanations and visual aids but we are so close now. By we I obviously mean she,  Eliza is the one working towards being continent but I say we as it’s a journey of hers where I have always been by her side guiding her and preparing her. During the last few months she has been using the bathroom more and more and trying really hard to be continent.

After a lovely meeting with the continence team this week we decided it was time to take the next step and move from pull-ups (nappies but shaped like pants/knickers) to proper cotton knickers (Eliza has chosen to call them knickers but some of you may say pants, undies, underwear… but as Eliza calls her pull-ups ‘pants’ we needed a different word).  As it is such a change we thought using washable incontinence knickers would be a step forward – these are simply cotton and look like normal girls knickers but with a built in cotton booster to help with little accidents, you know those ‘not quite made it’ moments. The hope is as time progresses she will then just move on to normal girls knickers in time. We have extra books ready to help her learn about how it’s quite normal to use the loo etc. This is when I decided on a plan that may help her take to the idea even more.

Eliza LOVES Christmas, she adores Santa and every December she pretty much bounces rather than walks. So I decided to write her this letter…

elizasanta2016

This letter will be ‘delivered’ to her on Tuesday as she breaks up from School for the holidays. As you will see in the letter, we have mentioned Mrs Claus and a special present. To help Eliza with her next step towards continence and use her love of Christmas I am making up a pretty box, a ‘special present’ from Mrs Claus. Inside the box will be some pretty knickers, books, stickers and a new kids padded toilet seat (you know those ones you can move on and off as needed). It will be wrapped up and will have a letter from Mrs Claus attached. The fact that Santa, in his letter above, will have pre warned her about the present will ready her for the arrival of this special gift. This is the letter from Mrs Claus…

mrsclaslet

So that is my plan and I hope it helps her on her transition. I thought the special box should come from Mrs Claus, you know, girl to girl as such. So there it is, my cheeky use of something my child loves being used to try and help her with something she struggles with. It wont work for all children, this is just something I know will go down well with Eliza. Although I hope it gives some of you ideas that things like this can work. It doesn’t have to be Christmas, it could be linked to a favourite character or film. This is just something I know MY child will adore and be amazed at. Eliza is very visual, she likes to see/watch and to read and she will read the letters over and over with joy. I am hoping it gives her that extra boost in confidence to at least try the knickers and we will just from there, at her pace like we always do.

Waiting to pack 2016 away

Normally by now I am looking back at a great year full of memories and amazing moments and my biggest worries are whether the turkey will be big enough, thinking about whether I wrapped everything correctly and making sure the mulled wine stash is ready. For a long time now I have wished 2016 was over. I just want to pack it in a box and never think about it again. What a shit year it has been!

A friend of mine posted a link on Facebook yesterday that contained a video featuring a lot of famous people we have lost this year so far. I say so far but I hope that is where it stops, we have lost so many.  The main loss for me was Alan Rickman, I cried so much the day it was announced he had died. A man I had never met yet has made such an impact on me through his films, yes I shed a lot of tears. With him and David Bowie gone it felt like a domino effect and every month we saw more taken and because of their fame status it was in the news, the papers, on social media, everywhere! It just feels like death has really collected his famous people quota this year.

The United Kingdom was shaken up by ‘Brexit’ and faces a lot of uncertainty still. So much anger and hatred everywhere and I have seen families and friends fall out over which way they voted. Only time will tell if the majority voted well. Then there is Trump who is about to get his hands on the USA as such. I fear for my American friends and their children and I really fear for the ones that will pay for having that idiot in power, the ones that are vulnerable because they are the ones he will cause most harm to. The next few years for both Countries will be both interesting and terrifying.

For me personally it has been the worst year of my life. So many of my family have suffered for different reasons, friends too. My wonderful Dad is awaiting news as to whether his cancer treatment is working, after his cancer had spread earlier in the year. He finally retired this year though, not long before he turned 78! He is also helping my younger brother to look after my mother who has recently been given her Dementia diagnosis. Noah had his 3rd (hopefully last) operation and is now healing well. It’s weird to think he will be three in a few weeks time. This time last year I was thinking about him turning two. Little did I know that in the space of a year he would be so poorly, need three operations and end up without a kidney! Never did I think I would be sitting at a hospital bed side watching my two year old sleep because he was full of morphine and wondering whether he was going to die. Eliza started the year being bullied badly at school, anxiety rocketing and generally struggling because of how she was feeling. She was not doing well at school and we had had many issues that needed sorting, I was no longer happy with the school that had been so amazing the previous years. I’ll never forget her face when she came home with a huge black eye, she was so unhappy. Another week it was a footprint on her thigh, the week after teeth marks on her arm. I looked in to home schooling her and had written the letter ready to pull her from school but as it happened we decided to move area anyway and found her a different school.

Despite the awful year I am thankful for so many things. The biggest is that we get to have Christmas together another year. My boy made it through a horrendous time and is thriving. My Dad will come over for his Boxing Day Christmas dinner and bring my mother along and my brother. That in itself is wonderful as we get another special day. My mother has no idea who I am but I think she realises we belong to her as odd as that sounds. She enjoys watching the children play and talks to me about my dad but she calls him “My old man” because she’s forgotten he is my dad. I don’t call her mum anymore, I call her by her first name as its less confusing for her. As for Eliza, what can I say….. She is thriving and she is so happy. She loves her new School and she is doing extremely well in her lessons. Her anxiety is so low these days, many says I barely see it at all. She writes!! The first year she has written her name on many Christmas cards AND enjoyed it. She is growing up so fast and changing every day. We are working towards being fully continent with her too, something that has taken many MANY years. I will blog about that in a day or so as we are using her love of Christmas as an extra ‘nudge’ in the right direction. Me? Well I turn 40 just after Christmas. Do I feel it? No, not at all. I feel about 85! I am so tired lol. So tonight I am out for a meal with a bunch of lovely friends that I have not seen for months. An early birthday dinner for me as we will all be so very busy next week and my birthday falls on a bank holiday as usual. I can’t wait to see them. A few are missing because of other commitments and I will miss them and hope to see them soon.

2017, I hope you are ready for us all. I have such high hopes for you.

This has been a post for ‘Finish the sentence Friday’ and was hosted by the wonderful Kristi over at http://www.findingninee.com/ (Go check her out, she is the reason I started blogging and started our Facebook page. She rocks!!)

 

A Special Little Girl’s Christmas

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Dear Santa

As another Christmas approaches fast, I always think back to one special meeting we had a few years ago. It was a visit that changed how my daughter (and myself) saw Christmas and helped her enjoy what can be a stressful time of year that is full of change. Back in 2012 we came to see you in your magical winter wonderland with Eliza who was 3 years old. It was extremely busy as every child on earth wants to meet Santa and who can blame them, you rock! We had to queue, something Eliza wasn’t very good at them. The queue was in a very very VERY busy crowd of people, another thing Eliza wasn’t very good with. You see Santa, autistic children struggle with crowds, noise, waiting, busy atmospheres and change but Eliza had only one goal in mind which was to meet you.

“Merry Christmas to you all, you have a special little girl”

We spent what felt like years in a queue trying to entertain her as best we could and eventually reached the front of the queue. One of your kind elves led us to a door which opened and there you were waiting for us. The room was amazing and I was lost in the magic of Christmas as I admired the tree, the decorations, the smells and the lights. Eliza ignored you as you tried to ask her what she wanted for Christmas and whether she thought Mummy had been good that year (For the record Santa I am pretty good most of the time, honest). I nervously stepped forward and said “I’m sorry, she can’t talk yet” and you looked at me, smiled and nodded. Eliza wandered around the room being nosy, looking at her face in shiny baubles and picking up things that caught her eye. I started to move in a bit of a panic but you touched my hand and said “Leave her be, she’s OK. Nothing in here that can hurt her”.  A grumpy elf knocked and suggested time was ticking by but you kindly said we needed a little longer. Eliza carried on looking around and then she finally looked at you and came and sat by you. You quickly took this opportunity to greet her again and she smiled. She started to flap, it’s something she does when she is happy. Spontaneously Eliza leaned in towards your hand to give it a kiss at the same time you clicked a secret button to take her photo with you. I thanked you about a million times (probably at least ten in reality) because you made her visit so relaxed and comfortable. As we left the room you grabbed my hand and said “Merry Christmas to you all, you have a special little girl”.

The words you said to me have always stayed in my head. Every year we approach Christmas and I think of that one visit to see you. You see Santa what you didn’t know was that three weeks before we met you, Eliza had received her diagnosis of Autism with moderate-severe learning difficulties. She could not speak other than 2 or 3 words. The world overwhelmed her and she struggled to find her place in it. You made her feel so at ease and she had a wonderful time seeing you. For me as a parent I am so grateful to how you treated her and for the kind things you said to me. Thank you Santa for taking the time to let her anxiety drop, for letting her explore and just being understanding and kind. 

Eliza’s mum xx