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Time & Understanding

Former MemberFormer Member Carer/musicianPosts: 819 Part of The Mix Family
Hey guys, 

There is no right place to put this but as it might contain some triggering thing I will put in H&W. Bear with me I might start crying while i type this. 

Yesterday afternoon I received a message from family about my 2nd cousin who had gone for her routine MRI but she had taken a tern for the worse.

My cousin was born with a life limiting condition (can't name it) and a whole in her heart. Each birthday was a miracle for us. My cousin lives inside of a 9 year-old body with the development age of 10 month old. She is like any normal child she loves peppa pig and anything that makes her smile and she loves this moment in tangled when rapunzel hits flynn with frying pan always brings a smile to her face.  

As most of you know I'm a music student and have been busy with assignment, yesterday was a practical assignment hand in which was important for my grades. Even though it was hard I preformed after I received the news and came home well you guys know the rest I came into chat. My cousin is currently still in the ICU stable and fighting for her life. She has fought for 9 years 8 months longer than we all expected so all family close to her have been expected to prepare for the worse heading into coming days and weeks. 

Long story short, I not leaving the mix don't worry someone has to stay around to keep an eye on the carers stuff and let you guys know about awareness weeks. And no I'm not taking a break from chats either. All I am asking for is the chance to be given some time over the next month to deal with it all and prepare for the worse especially with studies coming to a close in a couple of months as i am avoiding redoing this year. 

I'm hoping to keep continuing like its any normal month but I know at present its easier said than done. 

Speak soon 
Abi

P.S - I have been an emotional wreck today by her bed side but holding it together for the sake of caring for others. 
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Comments

  • Former MemberFormer Member Posts: 1,938 Extreme Poster
    Just wanted to say that I'm so sorry to hear this. I hope you'll all be okay:( Sending hugs <3
  • Former MemberFormer Member Posts: 774 Part of The Mix Family
    Hey @Abigail my deepest sympathyes to your family and your cousin. I know what its like to have an whole in your heart (me having one). Hope your all be ok soon
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    Hi Everyone, 

    Thank you for the kind words. She is fighting hard with small steps each day. She isn't out of the worse of it all yet but keeping fighting hard for all her family. We want to keep her going as much as we can so I'm putting together her music on her phone and I'm trying not to put 'Crap' on it but as much Disney as I can for all the family to sing along to with her. Its hard trying to think what music listen to and what people might play to her as each person has different taste in music. The internet isn't working with this phone and the hospital internet the joy of old phones and modern internet. 

    Keep fighting your own battles 
    Abi x
  • JustVJustV Community Manager Posts: 5,612 Part of The Furniture
    Piling on the love here. What an awful thing to be going through. :(<3 Make sure you're looking after yourself @Abigail and we'll be here if and when you need us. The music idea is absolutely lovely.
    All behaviour is a need trying to be met.
    The truth resists simplicity.
  • AoifeAoife Community Manager Posts: 3,228 Boards Guru
    Hey @Abigail I'm really sorry to hear about your cousin. This is understandably a really difficult time for you and your family. I just wanted to let you know I'm thinking of you and that we're all here for you <3
    Maybe somethings don't get better, but we do. We get stronger. We learn to live with our situations as messy and ugly as they are. We fix what we can and we adapt to what we can't. Maybe some of us will never fully be okay, but at least we're here. We're still trying. We're doing the best we can. That's worth celebrating too ❤
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    Hey guys. 

    I'm sat in the hospital, be have been asked to prepare for the next month as she isn't getting any better. 

    I'm ready for a good cry as I know she isnt getting better. Thank you for all your kind thoughts. Unsure what going to be happening with everything that's going so. I should be in chat tonight but going to be a rough night so if I talk about it dont get angry with me it's a hard time. 

    Speak soon
    Keep fighting
    Abi
  • AoifeAoife Community Manager Posts: 3,228 Boards Guru
    Oh Abi I'm so sorry to hear this :( 

    We'll all be here to support you in chat and also on the boards anytime you want to talk. Knowing we might loose someone we love and care about is one of the hardest things to have to go through. Take as much time as you need and do what you can to look after yourself. Hope you're okay Abi, keep fighting too <3
    Maybe somethings don't get better, but we do. We get stronger. We learn to live with our situations as messy and ugly as they are. We fix what we can and we adapt to what we can't. Maybe some of us will never fully be okay, but at least we're here. We're still trying. We're doing the best we can. That's worth celebrating too ❤
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    Scrolling through my YouTube I found this video I dont listen to the song anymore but watching it signed (which is a language I've always wanted to learn) it's just incredible. Makes me remember that we need to fight but not on are own. 

    https://youtu.be/GUh4JnmcyAE
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    Just need a break from it all. Had a lovely week taking things at my own speed not worrying about other peoples meals and just being able to focus on my own emotional state with all that's going on. Today it's just not my day. Not even my niece can cheer me up. I have 9 days left of half term, I have an: essay to do, health care meeting to attend, catch up session in college, going home to see family, visit my cousin in hospital and her visiting days and hours changing all the time, clean the bathrooms and kitchen. All this wrapped in a great comment from my counsellor I dont want you to go and crash on me now. I just want to scream and hurt myself at the moment. 
  • Millie2787Millie2787 Community Champion Posts: 5,202 Part of The Furniture
    Sending you loads of love and hugs Abi 💜 and I know your going to hate me for saying this but try and find some time to factor in some self care even if it’s 10 minutes to paint your nails or do some moisturising, Your doing amazing coping with this all even if it doesn’t feel like it , So me and I’m site many others on here are proud xx ❤️ 
    Sometimes all you need is one person to believe in you , for you to begin to believe in yourself.
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    So I have been a bit quiet recently after my rant the other night. My cousin is getting a bit better but still in ICU and still got a long road to go. I am out with her mum today as she needs a break and a change of from looking at the hospital all the time. 
    From that list of stuff i had to do this week 
    essay to do, health care meeting to attend, catch up session in college, going home to see family, visit my cousin in hospital and her visiting days and hours changing all the time, clean the bathrooms and kitchen.
    Nearly finished an eassy, health meeting done, catch up session done but been replaced with 20 minutes a day of practical work, been home, not seen my cousin yet, not cleaned the bathroom and kitchen. Throughout it all I some how keep getting moody and annoyed all things I wish I could control at the moment. 

    I'm grateful for all who responded and hugs too, allows me to know I'm not alone going through this. I've set myself the challenge that my summer if all things stay the same. My present for my 18th is I want to learn to sign the song 'Fight song by Rachel Platten - 2014' Learning this will be an achievement for me as a human let alone a human carer. 

    Keep fighting 
    Speak soon
    Abi
  • AzzimanAzziman Moderator, Community Champion Posts: 2,103 Boards Champion
    Hey Abi!x

    Glad to hear that your cousin is getting better, little by little. Stay strong, you're doing so well!x

    Much love <3
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  • Former MemberFormer Member Community Manager Posts: 319 The Mix Regular
    edited April 2019
    Hey Abi.

    Incredible you've been able to achieve so much with everything that is going on. I think Fight Song is a beautiful song that speaks to so many people in different ways, sounds like a great goal to me. Whenever I see a song signed it especially touches me - I think it becomes even more powerful .

    Thinking of you, and we're all here for you for as long as you need us to be.
    *virtual hug*
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    So a well deserved night off after being at the hospital today. Everyone says its Easter let's make a big deal of it ... for most of it the reality is we have to continue. So my treat to myself was this 



    I promise that is not beer in the glass 😂😂. Its 3 months till my 18th and the harsh reality is my cousin could not make it, but that first time I held her in my hands in skibo I will always remember (mostly because I was 8 and shouldnt have been in there but oh well). Life continues so as my life continues I know she is part of my life. 
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    So I doubt anyone actually cares anymore, my cousin has been transferred hospital last Saturday to continue physio. Her mobility is limited normally but not being able to crawl for a bag of crisps is something she would do without thinking about. 

    I've decided to make a hard decision and I am looking at leaving the mix by the end of September. I will still be following the Carers project with Italia and keep up with the carers articles and awareness but I wont be as present in chats and on the boards, not that I ever a person that posted on the boards a lot. Its still new to me leaving. When the time comes to leaving I will probably say something more but for now there is no point at the moment, not that anyone will miss me. 

    Speak soon
    Abi
  • Former MemberFormer Member Posts: 1,171 Wise Owl
    Hey @Abigail

    Of course we still care - and really sorry to hear you will be leaving us so soon but totally understandable. You have been a lovely member of our community so yes we will miss you. Keep us updated - sending lots of hugs and best wishes to you and your cousin. Look after yourself <3

    - Lucy
  • AoifeAoife Community Manager Posts: 3,228 Boards Guru
    Hey @Abigail

    I just wanted to echo what Lucy said and say that we really care about you and I'm really sad to hear that you'll be leaving us soon. You're such a valued member here and I can't imagine The Mix without you. We'll always be here anytime you want to come back but I understand if leaving is best for you at the moment. 

    Keep us updated with how your cousin is doing. I really hope the physio can help, it sounds really tough what she's going through and also for you and your family too. Thinking of you <3
    Maybe somethings don't get better, but we do. We get stronger. We learn to live with our situations as messy and ugly as they are. We fix what we can and we adapt to what we can't. Maybe some of us will never fully be okay, but at least we're here. We're still trying. We're doing the best we can. That's worth celebrating too ❤
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    Keep us updated with how your cousin is doing.
    She was discharged from her 2nd hospital the other day not sure if the physio helped or not but I am assuming its helped a bit. 

    It's not exactly leaving more like taking a step back for a while. Some of the mods are already pinned me down and said come back once a term so not fully escaping from me.  <3 
  • AoifeAoife Community Manager Posts: 3,228 Boards Guru
    edited May 2019
    Hey @Abigail

    I hope she's doing okay. Hopefully being back in the comfort of her own home will be better for her. How are you feeling about everything? This isn't an easy thing to go through at all <3

    It's not exactly leaving more like taking a step back for a while. Some of the mods are already pinned me down and said come back once a term so not fully escaping from me.  <3

    Yay I'm glad you're not completely leaving! 

    Maybe somethings don't get better, but we do. We get stronger. We learn to live with our situations as messy and ugly as they are. We fix what we can and we adapt to what we can't. Maybe some of us will never fully be okay, but at least we're here. We're still trying. We're doing the best we can. That's worth celebrating too ❤
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    She back at home safe and happy being her normal self. She has her dog back as well which she loves as he cleans up all the food she drops. Feeling alright about it to be honest @Aife

    If I completely left mods such as Aman, Michelle and Alice would just be baffled by how quiet closing rounds are without me annoying them. Biggest change you guys will see is new mods chats I wont be putting the fear of God into them - which is probably a good thing. Your not losing anyone your gaining someone with more understanding and more refreshed for when I'm here. Anyway someone has to keep poking italia on the carers project 😂😂😂
  • Former MemberFormer Member Posts: 309 The Mix Regular

    Hi @Abigail

    I've just spotted this thread and I just wanted you to know how incredible I think you are and that I'm thinking of you! <3

    It sounds like you and your family are going through a really tough time but I think the way you keep going, supporting them and also doing your college work too is so inspiring.

    I think it's good that you know when you need a little break for yourself and so to reduce your hours here is understandable but I'm glad to hear you won't be gone for good!

  • Former MemberFormer Member Posts: 133 The Mix Convert
    Hi Abigail

    I'm so glad that your cousin is back at home, and especially with her dog, pets are amazing aren't they!

    Like others have said, you'll definitely be missed when you take a step back, although it's lovely that you'll still be involved with the carers project, I'm sure Italia needs you ;) I've really enjoyed some of the awareness threads that you've shared, you're doing such a great job. You said yourself that having some space means you'll be more refreshed when you do post or visit chat, that's a really mature attitude to have, so well done you!

    Caroline <3
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    edited September 18
    I'm going to miss being around but its whats best for me I think at the moment. I've come right down from doing all chats Sunday to Thursday 8 to 9:30 to doing opening round unless I've been pinned in chat by the mod (Joke I promise) 

    @Past User You've got my sense of humour you really do :joy: . Its lovely to see that people are reading the things we write for carers awareness. If National Donor Day (14th June 2019) If that didn't fall on that day there might have been something going up but sadly I've just not had chance to do anything as its another topic close to my heart as a blood donor. 

    @Past User Thanks i think? We are a family of fighters. We take any situation and work through it. I know I wouldn't be sat typing this now if my cousin wasn't alive I would probably be else where try to make sense of it, situation like the ICU really made us all come close together. 

    @Lucy307 you wont be losing me, you'll be gaining better articles 3 times a year is how i'm thinking about it. Like I said to Aife, I have already been pinned down and told to come back once a term for chat with the mods. 

    Its going to be nice to take a seat back for a while as I work through things, Like what does almond milk taste like? is my new adventure for this week and milk free curry sauce from asda. I'm just ready for a change - but with change comes the scary side of what is and buts its why its a long process and I'm not leaving tomorrow as this process will take a long time for me. 
    Post edited by TheMix on
  • Former MemberFormer Member Posts: 88 Budding Regular
    edited June 2019
    Hi Abi,

    I've just come across your post and I just wanted to say how amazingly you are doing opening up about this. It is so difficult going through family illness but you are not alone - we will always be here for you whenever you do want to come back. 
     We are a family of fighters. We take any situation and work through it. 
    You are so strong, you should be so proud of yourself. 

    Sending lots of hugs your way <3
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    edited June 2019
    Thank you @alice123. Long fight a head these next 2 months. Been given 2 weeks for the operation could take place for her so getting all coursework done so I can be present for when the time comes. 

    My cousin will no doubt be in hospital for my 18th. Even though most know I'm not planning on celebrating it (my plans is to just annoy Aman and has been since January) there might be a chance I'll be doing a split day half in hospital half at home. Not going to be easy overthinking everything that could happen I just hope I can keep it together till the end of college. 

    Ive got 2 sections left on an essay but the thoughts are to much to do it. I want to cry but the tear wont come. I want to get out of bed and take the pain away but my leg feel like jelly. I hide the pain but where does that leave me wanting to pick up the packet.
    Post edited by Former Member on
  • Former MemberFormer Member Miniposter Posts: 810 Part of The Mix Family
    Hey Abi,

    I hope things have improved for you since making this post, there’s no rush to support others just try and focus on yourself and take some time to heal 💗

    Sending so much love your way x
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    Hi guys, 

    I know I've been fairly quiet recently and been either zoned out or there and present with nothing to stop me from supporting others - sadly that is me and I don't really have an in the middle button. I've been having medical issues myself with my knees playing up and ever bone in my body clicks on a daily bases all while preparing myself for my cousin operation as well. From Tuesday 2nd to Thursday 10th July (might be longer) I won't be support anyone with anything ... in fact I might be the on looking for a shoulder to cry. I don't know the state I will be in over the next few weeks but all i know is its going to be a hell of a month. 

    Like I said to someone said to me the other night, stay strong for her, my response continue being me then. 

    I'm hoping to pop on and off over the next few weeks (chats and the boards) but if not, stay strong and sorry if your upset that I wont be around for you to lean on . 

    Speak soon
    Abi
  • AoifeAoife Community Manager Posts: 3,228 Boards Guru
    edited September 18
    Hey @Abigail

    Just wanted to send you a hug and say that we'll be here anytime you want to talk about anything. It sounds like the next few weeks are going to be really tough for you. Just echoing what @Past User said a few weeks ago, take some time to focus on yourself and remember that we're here for you too.

    I really hope your cousin's operation goes okay in a few weeks. Keep us updated with how everything goes. I also hope things get better for you too, it sounds like you're in a lot of pain with your knees and your body. Make sure to look after yourself Abi <3
    Post edited by TheMix on
    Maybe somethings don't get better, but we do. We get stronger. We learn to live with our situations as messy and ugly as they are. We fix what we can and we adapt to what we can't. Maybe some of us will never fully be okay, but at least we're here. We're still trying. We're doing the best we can. That's worth celebrating too ❤
  • Former MemberFormer Member Carer/musician Posts: 819 Part of The Mix Family
    Thank you @Aife. <3

    Her operation has been cancelled for tomorrow but this doesn't mean I'm not taking time off supporting others (Unless I've messaged saying otherwise) I need some me time as an early birthday present to myself. Going to be a fair old month with a lot of different emotions going on, just got to keep my head up around family. I know some people relay a lot on me for support but i need a break so from tomorrow till I say other I will only be on every know and then (unless its to annoy mike  ;)


    Look after yourselfs, 
    Abi
  • SienaSiena Posts: 15,687 Skive's The Limit
    edited July 2019
    Thinking of you and sending hugs!

    its okay. Everyone has people that rely on them for support - just like everyone has people they find support in too, in many ways. And people are very understanding when someone needs more time for themselves, esp when been giving lots of support. All deserve to give lots of support to ourselves too

    take care
    “And when they look at you, they won't see everything you've been through. They won't see the **** that turned to scars that began to fade with time. They won't see the heartbreaking things that shook up and changed your entire world. They won't know how many tears you cried or even what it was you were crying about. They won't see how strong you had to be because you had no other choice. What they will see though is how compassionate you are because you experienced pain. What they will see is how kind you are because you experienced how cruel the world is. What they will see is how good you are because you've seen how bad things or people can be. The difference between you and your experiences are who you choose to be, despite everything that could have turned you cold and unkind.You are the good the world needs and the best of us.” ~ Kirsten Corley
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