I am trying so hard to keep going, to enjoy something, to give the people I support at work what they deserve, to be there for family and friends. Yet some days, it feels like I am failing.

I know I am constantly trying to fill the void Emelia left, with bird watching or time away or TV, but I am always disappointed as they just don’t come close to filling it. Which, I know before I try, but it’s still something I seem to need to do, possibly human nature and natural, but I am living with disappointment as well as grief.

Becky’s words above ring true. I am suck somewhere in the middle, I can not look back, I struggle to remember, then I get cross/upset as I can’t remember. I don’t want to move forward as that’s making memories without Emelia. As another grieving mum said, this grief is all consuming that you struggle to remember the past or see the future.

I don’t say this for sympathy or a woe is me as I am trying hard, but some days like yesterday I can do nothing but cry, ugly cry because it’s so unfair. Life goes on around me, exciting things are happening around me, and I want to feel excited and happy for friends and family, but it takes a lot of energy and some days I feel so very sad that we don’t get to do those things to feel these highs.

We went to the most beautiful places and saw some amazing nature on our last trip away, but I felt I was chasing those highs, desperate to see the white tailed Eagle, for example, and then disappointed when I did see it, as I didn’t get that high, everything is tainted with such sadness, and I am finding that hard. I know Emelia would want us to have joy in our lives, but we’ve got to learn to allow ourselves to have joy. I guess we aren’t ready for that yet. 

But I try …..

I feel like I am living between 2 worlds, 1 world has Emelia in, and the other world doesn’t. I can’t live in the world with Emelia as she isn’t here, and I DON’T want to live in the other world as that’s accepting she has gone, and I can’t accept that. It’s a strange feeling living between 2 worlds feeling like you don’t fit into either. However, I do my best. I have had small wins in my world with work, I am back to driving to Nottingham and facilitating a group face to face, the drive last week was tough as 2 years ago that day we drove Emelia to the hospital in Nottingham and she never came home. But I did it, and the group went really well.

September has loomed for a while like a black cloud in front of us. September is the month as parents we heard the hardest words “there’s nothing more we can do other than make Emelia as comfortable as possible ” ” she may have a couple of months or it could be weeks”.

That heavy black cloud now looms over me, weighing down on me, it’s an intense sadness.

We heard those words on the 2nd of September. The start of 3 weeks of hell, watch our baby go from being bossy to bring in a coma. This year, I arranged to see a friend to hopefully take my mind away from the hideous memories. But after pushing through for work, my body decided differently, and I had a 2 day headache instead. I slept a lot, which may be is a blessing.

The next few weeks, Emelia will be more on my mind, I am sure, as I remember the struggle Emelia had, it was tough to watch, so I’m not sure how she kept her thumbs up. At one point, after a seizure, she held me and said I love you, I think this is the end, mum. I feel funny please tell everyone I love them. It wasn’t the end she had 2 more weeks.

October comes after September, and it’s Tom’s 21st birthday. That’s going to be a tough birthday for him, as it was the last one Emelia had, I see he is living life fast, I think he may wonder if he will get past 21. It’s hard to celebrate anything as there is always someone missing. But I know he deserves to celebrate, so I will try to make it special. I work hard not to pressurise him as i know he has a tough role, we have a huge hole in our family now, and he doesn’t need to feel like he should fill it. I know he does make more effort when he can with grandparents.

November, it’s Emelia’s birthday month, at least it’s at the beginning. But then Christmas will have started, in the shops, people being jolly and having happy family time.

I will keep going one foot in front of the other, plodding or wading through treacle, but going forward even though I want to shout ………..

Wake me up after New Year

I’ve tried to work out my thought process yesterday, and to be honest, I don’t think there was one, other than I need to get drunk and feel something else, something other than this dark cloud hanging over me.

And if the truth be known, it worked for an hour or so, and I felt amused at things. I could see why people turn to drugs and alcohol and get addicted to the free feeling you get from it (just to note this is alcohol, I have never experienced drugs so can only surmise on how they make you feel)

However, if you know me well, you will know that since having chemo, I can’t tolerate much alcohol, I get very sick! So today will be a write-off, as I recover from a rough night. Be gentle with me today, as the after effects make me even more emotional (yes, this is possible). I feel silly, but every now and again, I need reminding alcohol doesn’t help in the long run. Also, a note to myself that nothing will ease the pain of Emelia’s death, the whole she has left in my world. I should just feel these feelings, as that’s the only way to keep going. She deserves that.

On the plus side, I don’t think I sent any embarrassing I love you messages 💓 or worse, whilst under the influence. If I did, I apologise, if it’s any consolation, I was thinking about you, when I was feeling amused 😆

At the beginning of December, we drove home from somewhere in the dark, and the realisation that I didn’t actually go out after dark last year hit me, I didn’t see any lights last Christmas. Christmas passed me by, and I can’t actually remember what we did. It’s a strange feeling, another Christmas which Emelia isn’t here for.

So for Christmas 2022, we made the decision to go away, to leave the festivities behind, to find somewhere away from it all, and it was the right thing to do, Christmas passed us by like any other day when away. A walk around a nearby town, which was quiet but not deserted. With the birds and the river. We didn’t have a traditional Christmas dinner, we had a quiet peaceful day. Not having any memories attached to where we were possibly helped, but being in nature and surrounded by fields certainly did.

Today, New Year’s Eve has been the hardest day so far – I do remember that last New Year was tough, too.

I have struggled with another year starting without Emelia, with not enjoying anything, seeing no joy in things I have tried, I have bought a camera to take pictures of birds, but today I could not see the joy in that. I have spent time today acknowledging that there are times I don’t actually want to be here, that life with this pain is so hard, the hole in my heart physically hurts and I can’t/don’t want to carry on. But………

I am clearly stronger than I think. As I pulled myself off the sofa, put Spotify on loud and started to cook dinner for Mark coming home. Whilst cooking, 2 dear, dear friends messaged to ask if I was okay, and I was able to say no, but I will be. We had a chat about my yorkshire pud looking odd and burning food. They really helped me ❤ And I will be okay. If I look back on this time last year, I can see how far I have come. And I have some very special people in my life who love me – thank you xx

This week has hit me hard, I actually hadn’t thought about this week, maybe I had pushed it to the back of my mind. Instead I had been concentrating on the 24th September, planning how I was going to get through the week before and then the day. So up until this week arriving and remembering that Tuesday’s date was the last day she ever had at home, it hadn’t seemed to have entered my head.

Then I realised and remembered it all, all of this week a year ago, and the heartache it brought us. Up until tomorrow a year ago, we had hope, we had the promise of time, we had plans and things to achieve. Emelia had a bucket list, she had a smile and things to laugh about. She had her lego to complete, to learn needle felting and crocheting. The baking we had planned, the trips out, the campervan we were buying and trips we would take. We thought we had time, albeit maybe not a lot of time, but some quality time, even after the terminal diagnosis on the 2nd September we thought for a couple of days we had sometime, she wanted to make it to at least her birthday and then Christmas, although in true Emelia style, she didn’t want to die too close to Christmas and spoil it for everyone else!

Back to this time last year, I had swapped with Mark and come home, thinking they would both be back in a couple of days, still thinking its was swelling due to the proton beam radiotherapy. To be called early the next morning by Mark and told to come back in as the Dr wanted to talk to us all, was one of, if not the worst call I have ever received, I knew then it wasn’t good news. Next week, last year more tears than you can imagine were cried, the heartache of telling your baby girl she is wasn’t well enough to return home, a conversation you hope never to have, the decision we had to make for Emelia again you hope you never have to make for your daughter. Watching her in pain, the type of pain I can’t imagine, yet she didn’t really complain.

I have tried to carry-on working this week, who knows if that was the right thing. But I managed to do some work and had a structure to 3 days this week, maybe not quality work but better than nothing. If I’d thought about this week I may have booked leave and gone away in the motorhome, but I’ve learnt for next year. At least I have been able to sit in the garden and watch the birds, butterflies and dragonflies, this always brings comfort.

The next few weeks are going to be incredibly difficult for all who love Emelia,

As I lay here wondering why I am struggling to get up this morning, wondering why I feel emotional drained and on the edge, I stop myself as having a why isn’t going to change it, isn’t going to fix this. She isn’t here.

She isn’t here to see her friends graduate and go on to their next chapter, she would be so proud of them and pleased they are living live, but she isn’t here to tell them.

She isn’t here to see the lionesses win. The last football match we watched was the men’s euros in Manchester – we aren’t a football family, but Emelia liked sport and supported England at sport, she would have loved the womens euro especially the fact they won. She isn’t here to see the whole impact that win will have on the woman of her generation.

She isn’t here to see this season of Law and Order SUV, or the new fantastic beast film or the up coming return of Criminal Minds.

She isn’t here to see me capsize the kayak and Theo in the sea, to laugh at me and comfort Theo. To tell me off for going too quick with the tide, and then losing her sunglasses to the ocean.

She isn’t here to show off her paddle boarding skills and support me with my lack of skill.

So knowing exactly why I feel like I do today isn’t going to change her not being here. Instead of why, I will let the emotions sit with me today and be kind to me.

I hope she does see it, from wherever she is and that she laughs at me regularly. Keep sending me those signs – I get comfort from them Emelia xx

Fridays are hard, she took her last breathe on a Friday and vision I will never forget. Today is a Friday, but today is even harder.

A year ago today, Emelia and I visited A&E as her vision had deteriorated and her headaches hadn’t improved, luckily the doctor ordered a scan. 12 hours later we were made aware that they had found a mass. We overheard the on call neurologist trying to persuade the on call ophthalmologist to see Emelia and advise us on her sight, he wasn’t keen as it was midnight. The neurologist took us to see him (you know its serious when the top people take you to a different department) the ophthalmologist was positive that Emelia’s sight would return once the mass was removed. (I remember not liking him, he seemed arrogant)

Long story, short the neurologist spoke at length with QMC neurology department about Emelia going there, but they didn’t have a bed, so she was admitted to the ward at Lincoln County Hospital. I had to leave her at 1am, that was so hard, we hadn’t been told it was cancer. But we knew it was a mass, and overheard the word tumour. How Emelia started in such high spirits is beyond me but she was joking with the nurse about me being more worried about me leaving her, than she was at being left, this makes me smile writing it 😊

4am call to say she was blue lighted to QMC. Where she was alone with no visitors due to covid. How scared she must have been, but never showed it, we talked and video messaged most of the time.

To say I miss her is an understatement, my heart hurts if I think about her, being anywhere without me, we have always been a team. I loved being her mum, she taught me how to be a mum, she taught me unconditional love. I know I will never be the same, I know apart of me died when she did…..I don’t know if the above quote is true, but it feels like it, I want to believe it, as it gives a little comfort ❤

I realise everyone has a right to be happy and my pain isn’t felt by anyone else. I also want people to be happy and live a full and healthy life, but it has all opened up some old wounds.

When I was poorly my dad got in touch and we exchanged emails, trying to build bridges, but then I got well again and he stopped contact, refused to meet up, even started to bad mouth my mum again. I settled to the fact that he wasn’t going to be in my life yet again. I don’t talk about it much maybe because for many years I thought I had perhaps done something wrong, for him not to want to know me since I was 16, but no it just confirmed it was something to do with him. I told him in one email that I didn’t just lose him I lost the whole side of his family, in some ways that was harder to deal with. Luckily I am in touch with a few aunts, uncles and cousins and i don’t want that to change or upset them (but I need to say this) in turn so did my children, Emelia missed out too. She wasn’t treated as her cousin is. I will say Emelia was adamant she didn’t want to know him, couldn’t forgive him (she was loyally stubborn). I also want to say he used to bad mouth my mum, saying she wasn’t honest, plus lots of nasty words, yet mum never did the same. I don’t understand why he never wanted to meet my beautiful, amazing daughter- his loss.

So why am I writing about this briefly now? I have always remained quiet not said anything against a man, who calls himself my dad yet denies me. Its because as a parent I could never understand how you could go through life denying that you have a daughter, and her children? Yet happily spend time with your son and his daughtet. I would give anything to have my baby here to hold and love her. Oh and the fact he is having a splendid time skiing and enjoying life, like nothing has changed, which makes me sad and angry all over again (and yes a little bitter) But I can’t express this in case I upset people, however I am not bottling it up anymore, people who know me well, will know the hurt he has/still causes me.

There i have written it, but am I brave enough to post it? I feel better for writing it, and that’s the main thing – no more hate i am moving on, its more painful to live without my daughter.

I feel empty. I feel exhausted. I am broken. Simple. I have wrapped presents for 1 child and they are sat under a small token tree, sat there shouting she isn’t here, and will not be here again. How am I going to make it through the next week?

Even strictly final made me sad, I don’t want to upset anyone, and it must be disappointing to be injured and need to bow out of the final, but broken heart? Really? Life or death situation? The rest of strictly did have me in tears as it was beautiful and Emelia wasn’t here to tell me to get a grip.

I had never noticed before, how Christmas is thrust on us, every advert, every game show, film they are all Christmas based and you must be happy and joyful. I fell into this trap every year, I worked hard to make Christmas special, if only I had known last year was her last one. She said she wanted to make one last birthday and Christmas. Sadly not to be……. I am not wanting to “do” Christmas this year. I have bought Tom gifts as seems unfair to take this away from him as well, but no big meal, can’t face sitting round the table with an empty chair. Going into town to buy gifts, as all I see are the things I would have bought for her. Christmas cards well, luckily only received 1 that didn’t mention Emelia and as it happened wished that 2022 would be better than 2021! Well what can I say, in 2021 Emelia was alive simple, I would give anything to have to isolate to protect her this Christmas/New Year, no new year will ever be better than 2021 (I know what they were trying to say, rather insensitively but they meant well).

I am not doing so good this weekend but tomorrow is Monday and a new week. Positive steps over the last few weeks….. I have seen a few friends, briefly in person and via video chat, I have put some plans in place to return to work in March. I know that’s what Emelia wanted, she wasn’t afraid to die, she was worried how we would go on without her. Such an empathic soul (misconseption as Autistic people can be empathic) . I have baked (Tom enjoyed) and started crocheting again.

I have had trouble sleeping, if you know me well, you will know I could have won gold in the Olympics for sleeping, so not sleeping is a new and scary thing for me to experience, but I gave in and spoke to my GP and now have something to help, actually having sleep has made a difference.

Still need to get through this week, hoping no one at the supermarket asks if we are ready etc, and just waiting for the holiday adverts to start ……….

Today is a bad day, I feel lonely, its 8 weeks since she passed away, 8 weeks without hearing her, seeing her smile, without holding her. I ache to hold her one more time. I can’t understand why she had to go. Think Theo is starting to miss her too now, this is the longest he has gone without seeing her, he seems to be waiting for her.

I find sleeping hard, as soon as I try, my mind thinks of her and I can’t switch it off, my body physically aches as my head hits the pillow. As parents you have children and want to protect them, so it’s hard as parents to not be able to protect them when they need it the most.

Planning her funeral was the hardest thing, she didn’t like to talk about it, she hated fire any fire from candles to fireworks, but she also said she didn’t like the thought of being buried, nor buried under a tree (green burial) So we went for a cremation more because we kind of knew where she’d like to be scattered. Who knew choosing music could be so hard, it turned out that Emelia didn’t share her choice in music with friends, as she didn’t want to be judged. No parent should have to organise their child’s funeral – its the wrong order of things. But we did and i think we did her proud and wow the love for her is overwhelming she had such an affect on people which she never saw. She inspired so many people in her short time, she inspired me on a daily basis and I miss that about her, her continued support.

Its like a light has gone out in our lives, it feels like we will never find happiness in anything again. We know she wouldn’t want us to live like this, but at this time its so hard to just put one foot in front of the other.

I have so much love inside to give her, yet she isn’t here to give it to her, so I physically ache to share it with her again, so it’s painful. I constantly talk to her as I know she’d laugh at us and call me cringo, we scattered her in a beautiful place near water with lots of wildlife and a steam train, such a peaceful place, it’s comforting to know she would be happy there and that she loved being there, yet it was hard to leave her yet again, although not as hard as it was to leave her alone at the hospital after she had passed, I will never forget walking out of the ward without her.