Osteosarcoma

Life after cancer

So I’ve wrote a lot about this in my blogs, but each time I do, I feel it never does it justice.

I feel like no matter how much you describe what it’s like to non-oncology families, you can never quite get it right.

So I will try again.

Imagine a skydive. But without choice. You’re a forced to do it.

So you’ve been signed up. You know in a million years you would never do it voluntarily and actually it’s probably everyone’s worst nightmare. But you don’t have a choice.

Your name is down and the days are rolling.

You research silly articles of how someone died because their parachute failed to open. God. It gives you shivers.

But of course, there is always that small niggle in the back of your mind saying “that won’t happen to me”.

You research statistics and justify a reason for feeling scared. Or indeed, use it to contain your fears because actually the odds are for you.

One day you will feel brave.

One day you won’t.

One day you’ll wake up thinking “what have I got myself into”

From the minute you are told your name is on the list is when it starts.

On the day you are petrified. You can’t eat. You can’t sleep. You worry about every possible thing that could go wrong.

When you’re going up in the plane you go numb. You’re on autopilot. You know your body is there, but your mind never is. You feel like you’re floating.

Then comes the jump.

The leap of faith.

Except…. it’s not really a jump at all.

You are strapped to a stranger, your whole life is in their hands.

You are pushed.

And the only control you have is to buckle up, do as you are told and hope you make it to the bottom.

Adrenaline gushes through your whole body, making you feel so sick.

You don’t dare let yourself feel proud, because it’s still not over.

Then it is.

Just like that.

It’s all over.

You are greeted by people cheering and celebrating. Congratulating you on it being over and how brave you were.

After all, they couldn’t do it.

But you don’t feel happy.

You still feel sick to the stomach.

You are on the ground, yes. But it’s not the same as before.

You somehow have to navigate through to the changing room to get changed.

You get your certificate and pose for a fake photo to say ‘well done’ and you get in the car and go home.

All the way home you are trying to regulate your stomach. Trying to process what on earth has just happened.

This is where it differs though.

For a skydive, you make it home.

You are safe.

Butt for oncology families, you are forever stuck in that home journey.

Never knowing when you will make it, that’s if you will.

And that’s where I am.

I’m driving.

I’m processing.

I have a constant knot in my stomach that tells me things aren’t OK.

No matter how many times we are told ‘he’s in remission’ or ‘X-ray is clear’ to me I can’t celebrate it.

To me, it just means it’s back at the start of the 8 week wait until the next one.

See the thing is, hair grows back.

Life goes on.

People forget.

But I would do anything to forget. To move on.

I’m scared.

I’m stuck.

And I don’t know how to get myself home.

Xxx

Osteosarcoma

The only cure for grief is to grieve

It’s coming up to that time of year again for me and my family. In 2019, I lost both of my grandads within 1 month of each other. 6 months before I had never needed them more.

Now, 2 years on, it feels like nothing has changed while at the same time feeling like everything is different.

I am aware that makes no sense.

I can have days where I think I’ll just pop over to see Grandad Joe or go to lunch with Grandad Mike, before realising I can’t.

Part of grieving is talking. Or writing in this case. So I’m going to write.

Grandad Mike was the loudest, funniest man you would ever meet. He was Broadstairs beach personified. Sitting at the beach hut in his red speedos, giving pound coins to all of the great grandchildren so they can go on the roundabout or buy an ice cream. Sitting there in the summer evenings (thankfully a bit more covered up 😝) watching the fireworks, while making more noise than all the kids put together. Fireworks are not the same now without the over the top ooos and ahhhs coming from him. The random bags of apples or bunches of dahlias left on our doorsteps, with everyone knowing they were from him. Fruit picking in his allotments all kinds of fruit that we knew we wouldn’t eat, but it was fun nevertheless. Taking us out for lunch most weeks to his favourite Toby Carvery just so he can have his lemon ice cream sundae. Telling everyone who came near us that we were his family and “aren’t they beautiful”. He always said how lucky he was. Truth is, it was us who was lucky.

Grandad Joe. Humble, proud but quietly fierce. He stood tall and always made me feel safe. He was everything I missed out on in a Dad. Cheating at board games and denying it- even getting the kids in on his plan! Monday’s was my day to take Iris to see him and my Nan. Iris was the one out of all my children that he saw the most. They were a pair! She made him belly laugh with her funny ways and odd nature. They would sit on his chair looking through his magnifying glass just seeing what they could see. She made the old Grandad come out. The Grandad that he was to us when we were little. The naughty, rebellious Grandad who would sneak cake when my Nan wasn’t looking because she would tell him off. The journeys in his car to random farms, listening and singing along to the carpenters . Oh and he was proud. So proud. He was proud of his family. He never judged. The mistakes I have made in my life, he just listened. “Grandad….. I’m pregnant” was something I remember the most. Despite circumstances, he was pleased. He wanted me to be happy.

I miss them both. Not any less than 2 years ago, not any more, just the same.

The emptiness is still there but you just learn you have to fill it.

I struggle with not having anywhere to go for them both. They were both cremated at the same crematorium, so that’s the only place I kind of have that’s ‘theirs’.

But I know they would both be proud of me and the kids. I know they would be so so proud of Ellis.

In my darkest days, I’ve felt them there.

Sitting alone in the dark on T11 North ward, wondering how I was going to cope with what lie ahead, I knew.

I knew I would be OK because they were both looking out for us.

So yes I am still grieving 2 years on, but that’s OK. Grieving isn’t a race. Its your journey to make in your own pace.

Do it your way, because that’s OK.

Xxx

Osteosarcoma

Let’s talk mental health

So things are pretty good here.

Ellis is doing really well. The girls are the incredible sassy little ladies they always are and I am in a really good place.

So things should be all hunky dory, right?

Not entirely.

Just because you’ve had it harder than you ever thought possible, doesn’t mean it won’t ever be hard again.

Mental health is something that definitely shouldn’t be hidden away because of shame or because you think you don’t have the right to feel that way.

I struggle with my mental health a lot.

Does it mean that I’m failing? No.

Does it mean I can’t cope? Not at all.

Does it mean I’m a bad Mum? Absolutely definitely not.

I’m human.

I’ll use social media as an example.

The ‘perfect’ pictures, the days out all smiling and looking our best. But the reality is 23 before and after takes, all unfiltered where one kid has sneezed snot everywhere, I have 17 chins on show and we look as if we hate each other.

Why do we do it? Why do we feel the need to only ever show ourselves at our best. Who are we doing it for?

Ourselves?

Our friends?

That one crazy woman who you know knows you can’t stand her, but she still looks at your pictures anyway… 😜

It’s all fake.

It’s a perception of our lives that we are almost conditioned into sharing.

The ‘best’ versions of ourselves.

But these very posts are the posts that make us feel worse.

The competition of who is parenting the best, the rivalry between how many words our toddlers can say and the gloating when little Johnny ate 7 of his 5 a day while Emma did her kettle bells….

I mean…

Is this the world we are bringing our kids into?

It makes me sad.

I for one, need to start showing my kids that being me is actually OK. Being me is more than OK.

Since meeting Matt (a hot PE teacher who swept me off my feet after giving my son more than anyone else had even attempted to do) we’ve spoke a lot about this and about how for the first time ever, I feel OK to be me.

It’s OK to admit your feeling sad for absolutely no reason at all. It’s OK to go places and see it through your own eyes, rather than a phone screen because you’re too busy recording. It’s OK to be over-the-too happy and borderline annoying for no apparent reason (or even milking period pains to get chocolate 😝).

It’s OK to admit that although you wouldn’t change a single thing about your life, it’s still hard.

The world needs to stop being black and white. It needs to stop being a place where you feel like you should have to feel a certain way because everyone assumes you should.

Life is my story.

I am the author.

It’s time I stop letting other people hold my pen.

Xxx

Osteosarcoma

A destination to being better.

Tomorrow will mark a whole year since Ellis’ operation to replace his femur and tibia with a titanium implant.

A whole year…

It doesn’t seem possible.

When lockdown was a scary rumour and the only bubble was my little family.

Yesterday we had a check up back up at Stanmore with his surgeon and an X-ray on his leg.

Armed with lots of questions, we were excited to go.

One of my favourite things that came out of Ellis diagnosis was the road trips. The few hours in the car, feeling protected and looked after. Feeling like every mile closer we got to the hospital, the more safe we felt. It was a destination to being better. That’s how I saw it.

You learn to trust the team looking after you because frankly, you don’t have another choice.

He has the best surgeon in the field and the best oncologist. A real life dream team.

When we arrived, it was quickly made apparent that he wouldn’t be seeing his actual surgeon. It was a lady who we have never met. She didn’t know Ellis or his case and that was very obvious to us as soon as we walked in.

As soon as we walked in she said ‘“You’re limping”

Hello to you too and yes, this the reason why I wanted a face to face and not a telephone call.

I spent the next 20 minutes feeling like a naughty kid in the heads office.

She made me feel so small and insignificant.

I always ask questions, no matter how silly, because I want to know. But I stopped asking with her as she made me feel so stupid.

Ellis spoke about his charity walk and she frowned.

“Well… we don’t want him running any marathons. We want this leg to last”

To the boy who had faced so much uncertainty in his life, so get back up on his feet and try so bloody hard… for her then to say that? No thank you.

His actual surgeon is an incredible man, encouraging Ellis to weight bare as soon as he woke up from the op. Filling his head with a ‘can do’ attitude and that cancer will not stop him from anything.

And here she is, undoing all that positivity in one sentence.

Nice one 👍🏻

We then spoke about his leg and muscle mass. She pointed out he still has a noticeable smaller thigh on his bad leg, to which I replied that he is working so hard with his exercises to try to build it back up.

This is what she said and how she said it.

“Why would you try to do then when he doesn’t have muscle there in the first place..?”

Erm… pardon?

“They took two of his quad muscles out when they operated, so no amount of squats will build it back up”

Huh…?!

A year down the road and they are just telling us this now??!!

A year of Ellis fighting to achieve and get ‘hench’ in his words…. to be told actually your leg will be like that forever.

Also, due to this, his knee will tend to bend to the left. Watch out for that.

Wtf?! I asked her what we can do to support this and she shrugged. Legit shrugged.

She then measured his legs as we are concerned that one is still longer than the other. We were right.

His bad leg is longer, but his femur part is shorter. So his bad knee is higher up then his good knee, but his tibia on his bad leg is longer. Basically he is all over the place.

She said because they had to cut away more femur than they originally measured, the implant sat up higher, meaning his knee would be higher.

Made sense.

She then flippantly said he would need an operation.

I’m sorry… what? Casually saying to the boy who has been through a year of hell, that he needs another operation and not elaborating on it was a good idea in your eyes..?!

I asked her to clarify.

Huff at me all you want love, my boy needs answers.

She said yes. He would need an operation to remove the growth plate in his good leg, to stop him growing.

Even though his good leg is shorter.

And his bad leg is extendable.

Excuse me for being dumb, but give me something to work with here… I’m confused.

She then changed her conversation onto his oncologist.

She very bluntly asked me what his oncologist said to me 3 months ago.

I paused.

About what?!

Oncology and surgeon appointments are very separate. I honestly wasn’t sure what she meant.

She said the same exact words back to me.

I mean, you can keep asking but I still have no fucking clue what you are going on about 🤷🏼‍♀️

A huff and an eye roll later, she said she meant about his lung nodules.

I said he had an X-ray last month and I have a telephone consultation with the oncologist tomorrow. Why’s that?

She told me nodules showed up on his X-ray. She was looking at it now.

The X-ray that we don’t know the results for until tomorrow.

Nodules? On his lungs? Again?

I started to panic. She then realised and backtracked.

We then left.

The drive home was quiet.

We were trying to process this in our head… but didn’t know where to start to make sense if it all.

None of it made sense.

So now, here I am, on the eve of his 1 year operation anniversary, feeling like the very beginning all over again.

I’m trying to be positive.

I’m trying to make myself think that tomorrow, his oncologist will ring me to tell me she got the wrong child and that it’s all fine.

Until then, there is not a lot I can do.

Ellis’ first words he spoke after diagnosis, echo through me tonight.

“What’s the point of worrying, it won’t change anything”

I know he’s right. It’s the mantra that I’ve lived by for the last year.

Fingers crossed

Xxx

Osteosarcoma

Happy

This…. ☝🏻

My life is bloody good. Better than good. My life is awesome.

Ellis is doing so well, he is incredible. He has a check up with his oncologist next week as well as his surgeon. He might finally need his first appointment to ‘grow’ his implant in his leg, which still freaks me out! He is growing so much and is now a size 12 shoe. I mean… stop now. Jeez.

The girls are doing well too. Beth is making me so proud with the things she is having to overcome this school year. Year 11s have had is so tough, but she’s smashing through it and planning where life will take her when she finishes. Covid or no Covid, she will achieve big.

Lily is Lily. She silently gets on without much fuss. She has always been a grade A student and came out of the womb ready for grammar school..! She is extremely academic and loves learning, even smashing records at school with her grades. But due to the year she had with Ellis last year, she failed her Kent test. (The test needed to get into a Grammar school). Not only that, she got offered one of the worst secondary schools in our area.

I can’t help but feel I let her down. Last year, I was so busy with hospitals, appointments, chemo and all things Ellis, that I had nothing left to give to the girls. Lily did no work whatsoever during the first lockdown. And actually, after only 3 months of year 5 before lockdown, she only just narrowly missed out. That’s pretty good going! We had to shield before everyone else locked down, so she had much less time at school than everyone else.

As well as the emotional journey she went on, my clumsy kid cracked her head open the day before the Kent Test and only answered 16 questions on the day due to a headache.

I mean, if that’s not ground for appeal, I don’t know what is.

I will do what I do best and fight for my babies. I am appealing for her to attend Ellis’ grammar school and have a huge pack ready and waiting for the appeal.

Bring

It

On

Iris is the most hard work lately. She is being assessed for ASD through school and I’m trying to learn how to parent a child on the spectrum. No matter the outcome, she is still just her, but I want to make sure I can do the best I can for her.

I had my Covid jab last week as I am a registered carer for Ellis. I don’t mind jabs and needles, as with my history I don’t have much of a choice, but I was scared. It’s new and controversial, but I knew I wanted it. The jab itself was fine, so fine in fact I had to ask the nurse if she had done it 🤦🏼‍♀️😂 but that night was horrible. I felt rough all the next day too but finally started to feel better that evening. I ran out of paracetamol and could only find calpol…. so thought hey, why not.

Calpol is banging.

It’s the first time I have ever made sure I’ve taken anything on time every 4 hours and didn’t miss a dose 😂 I even contemplated it on Ice Cream…. Kids don’t know they are born I tell ya.

So now we are only 4 days away from the end goal that is 8th March. The date that so many parents have been waiting for but dreading at the same time. It’s been a real mixed bag.

I for one can’t wait for them to go back, Ellis included. They all need routine back and to stop eating all my bloody food.

If I hear the words “I’m hungry” again I’ll personally post my children to Boris to make him deal with them. See ya kids 👋🏻

And my personal life? It’s safe to say that it’s on point. It’s incredible. It’s sickening good. I’m living again, like really living. I’m excited for my plans, for the future. But that’s for another blog 😜

To my fellow parents….

4 days until they are back at school.

39 days until the pubs open.

We’ve got this 💪🏻

Osteosarcoma

Moving on peacefully

My blogs are becoming few and far between lately, nothing is really happening is the cancer world for either me or Ellis and lockdown has made it impossible to have any conversation that doesn’t involve “When this is all over” or “In the summer….”

For me, I’m in a really good place.

I am enjoying work (albeit challenging), I am sort of getting on top of balancing working from home and the dreaded home learning.

Things are calm.

Yesterday I decided to look back at pictures of Ellis’ journey as I am starting to forget.

If someone had said to me last summer that I would start to forget, I would laugh at them. It seemed impossible. The never ending roller coaster of emotions, appointments, chaotic days…. are all gone.

I looked back at the pictures last night and smiled. I felt content.

I didn’t smile because it doesn’t feel sad, but it doesn’t hurt anymore.

It’s now a ‘time in our life’.

A memory.

We’ve done it.

We’re no longer living in hell, terrified of every appointment, clinging on to every bloody result like his life depended on it… I mean it kind of did!

I feel at peace with it all.

I feel accomplished.

This is what it feels like to finally have closure.

I will forever carry around with me the things we learnt along the way, the things we experienced together and how they have shaped me into who I am now.

So in a strange way, I’m thankful for it.

It taught me that life can be fragile. It taught me that I am strong beyond anything I could imagine. It taught me that I can achieve anything as long as I fight for it.

Most importantly, it taught me to appreciate the silence.

When things are sailing on the calm, when the only drama is what to watch on TV that night, when life is simple.

I have a new found appreciation for walks, peace, nature, views. I spent so many days last year looking out of the view across London from his hospital ward. So many days walking around Regents Park, trying to keep my mind occupied. Watching the people go by, the squirrels jumping from tree to tree, it’s what kept me going.

My go to escape used to be angry car drives with the music up full, an angry run or dog walk with the music up full (I’m sensing a theme…)

But now it’s peace that silences my mind.

Now to start making new memories with my babies… peaceful, drama free ones 😝

Xxx

Osteosarcoma

Dear 2020. Nice try

This time last year I sat on my sofa absolutely terrified and numb for the year we had to come. As Big Ben struck midnight, I silently cried.

I wasn’t ready to fight.

I didn’t know how to.

I tried to look forward but couldn’t bare to at the same time.

It wasn’t fair. Cancer took me on once before- but that was a breeze compared to this.

This was hell.

Actual living hell.

And I couldn’t do anything other than fight.

So that’s what I did.

I dried my tears and pulled up my big girl pants and faced it head on again. But this time with a roar of ‘mama bear’ inside me.

No one messes with my kid.

As quick as I got the hang of fighting it, 2020 decided to give us another gift didn’t it.

Covid-19.

In our world of panic and fear it upped its game.

More infection control.

More worry.

More sleepless nights.

Less family and friend support.

Less human contact of any kind.

But I drew from the positives. It’s all I had.

No work, no childcare to negotiate, no guilt because I had missed family days out with the girls or missed school assemblies.

The world stopped right when I needed it to.

Positivity was all I had. It was all I could control and I was dammed if I was going to let go of that.

So it became our thing.

Laughing through chemo weeks, messing around on the way to appointments.

Looking back, we certainly did kill 2020 with kindness.

I once read a quote that said “Don’t raise your voice, improve your argument”

And our argument was strong.

We weren’t retaliating to Cancer or Covid. We didn’t even feel like we were fighting sometimes. We were just us. Me and my boy.

And we bossed it.

With huge smiles on our faces.

This year has taken so much from me but also given me much more.

I’m at peace now.

We did it. Together. And turns out we are a pretty unbreakable force.

So 2020, I see your Cancer and Covid-19 and I raise you happiness and positivity.

Because that will always be the winning hand.

Always.

Xxx

Osteosarcoma

“Maybe Christmas” he thought “Doesn’t come from a store. Maybe Christmas, perhaps, means a little bit more”

It’s here. Christmas. 3 days and counting.

Christmas 2020.

The most thought about, the most dreamed about and the most dreaded.

Every chemo stay, every operation and every London appointment to me, led to Christmas.

It has been my anchor during this horrible year, it’s been the thing that’s kept me going.

I was determined to make it the best Christmas ever, for them. It’s always for them.

Every day at the moment, I wake up to a new memory on Facebook of this time last year and each time it feels as if I am reliving it all over again.

Last Christmas Eve was spent sat by an empty bed, staring at the lonely present left on his bed by the lovely play therapist.

Up until then, that was the worst day of my life.

Little did I know what the next year had in store for us.

I was a huge mix of emotions that day, missing my girls who were at home over 100 miles away. Terrified and eagerly waiting Ellis to be wheeled back and come round from his biopsy. Itching to get home to my babies in time to watch the magic in their eyes and excitement in their tummies.

All the while, feeling weirdly numb.

Last Christmas I didn’t dare look forward. I couldn’t. I wouldn’t let myself go there.

My head was full of ‘what ifs’ and fear.

Scared doesn’t begin to cover it.

We didn’t tell the girls about Ellis until after Christmas and New Year.

Why?

Because I honestly was scared it might be the last Christmas with him. I wanted to give them all the best memories. I didn’t care that my heart was breaking, I didn’t care that I was falling apart inside, all that mattered is that they were together.

I’ve never said that out loud or admitted it until the other day.

That’s huge to carry around for a year and it feels overwhelming to let it out.

But we did it. We are here and we are ready to have the first Christmas of many.

As you may know if you have read my blogs before, I didn’t cry about the situation all year, I couldn’t.

But as I write this, tears are falling from my face.

I’m not sad.

I’m grateful beyond any words could do justice.

My babies are OK.

Actually, they are more than ok, they are happy and all super excited about Christmas.

I know the Covid thing is making this Christmas hard for many and I can’t imagine what that must be like, but for me, I couldn’t care less.

I don’t care if shops aren’t open.

I don’t care if we can’t go grab a coffee.

I don’t care if we can’t have a huge family gathering (the time will come I’m sure and it will involve allllll the gin 😜).

All I care is that I will wake up Christmas Day to 4 beautiful, healthy children all soaking up the magic of it just for that one day.

Champagne is already chilling and carrots and mince pies for Santa are ready to go.

Wherever you are this Christmas, whatever you are doing, take time to be grateful for something during this madness.

Because it will fill your heart much more than any gifts can.

Xxx

Osteosarcoma

1 year later…

So today is the start of the firsts…

A year ago today was the first day we went to the GP and demanded an X-ray. Getting told off for booking an emergency appointment. Being questioned as to why I wanted him to have an X-ray and only being given one to shut me up.

From today onwards it will be full of many firsts. First chemo, first general anaesthetic, first hospital stay, first London appointment. It’s endless.

I haven’t wrote a blog in a while, as I’ve been taking some time out of life to focus on my mental health and well-being.

I knew this was coming and I have prepared myself for the emotional impact it will have.

Or I thought I have.

Turns out, you can never prepare yourself.

I’m still sad. So sad.

I’m still angry.

I’ve been told by many that they are worried about me. I have been told through people that they are concerned I’m having a break down. I have been told I am being supported. Which is useless, unless you are actually supporting me. Ironic really.

Supporting me and telling me you’re supporting me are two very different things.

One is for your benefit, the other is for mine.

Take a minute to think about which one you are.

One whole year has passed, but it only seems like yesterday we were told the news that changed us all forever.

But despite the emotional impact tomorrow’s date is having on me, I feel in a really good place.

The time I have taken to look after my mind is paying off. The hours of counselling have helped me feel calmness again, after a year of chaos.

Last Christmas, I was beyond terrified. I didn’t dare think forward to this Christmas, because I didn’t know what it would be like. I have never cried as much as I cried in that first week. It’s my main memory of it.

I have reflected a lot lately on the year passed and how it affected me.

I have learnt that I use detachment as a coping mechanism. I saw the treatment plan as a challenge- a game. It was just a target that we had to reach and to get there we had to jump through all these weird hoops.

That’s why I didn’t cry when he rung the bell or when we were told he is NED. I was still detached from it all.

But this weekend everything changed.

I went to London where it all began. I walked the same streets that were home to me for nearly a year. I stood outside the hospital and spoke about my experiences, the sounds, the smells, the routine. I looked up at the 11th floor, seeing the view from a different angle in more ways than one.

It was closure.

I felt contentment.

And I cried.

It felt exhausting but liberating all rolled into one. Like a tidal wave of emotions that I had stored away for a year, locked away in the fear that if I let myself feel, it would consume me.

But it didn’t.

I felt empowered yet weak all at the same time. It was surreal.

I went with one of my best friends who just let me talk. Let me waffle on about the expensive pharmacy who ripped me off for both hot water bottles and fans in the opposite seasons, really listened and asked questions about the treatment, my feelings, my worries.

Who stopped me in my tracks before we got there, looked me in the eye and said “What do you need from me” and for that, a simple thank you will never be enough.

I needed to be listened to not just heard.

Now, I know tomorrow will be hard, I know the next few months will also have their hard days but I know that I have overcome so so much and come out of it a better person. So I know I will be ok.

Yes, I am still scared and no, that probably won’t be the first time I will cry over the situation, but that is more than OK to me.

I am in control of the situation now, something that I haven’t been up until now.

And it feels incredible.

Xxx

Osteosarcoma

Still picking up the pieces

I’m feeling so sad tonight for a variety of reasons, most of which I can’t even write about on here, but there is one huge one that I’m struggling with.

My girls.

My beautiful girls. The girls who have took this year in their stride. They have been beyond incredible in their attitude, empathy and expressing their emotions. I could not be more proud.

But during this year, somewhere along this horrendous year, my girls have grown up.

And I’ve missed it.

Lily was only 3 when I was diagnosed and I remember that when it was all over I felt like I had missed out on her growing up. I didn’t know what her favourite dinner was anymore, what she liked to do or didn’t like. I remember this being so hard and I struggled for a long time with this.

Now it’s happening again.

I feel like I’ve been the shittest Mum to those girls this year.

I’ve been so consumed in Ellis and his needs and treatment, that I haven’t given them the time they need.

Iris doesn’t need me. She’s not fussed. It’s Daddy who she needs. When she can’t sleep, when she hurts herself, she doesn’t come to me anymore she goes to him. It’s beautiful to see their relationship blossom over this last year, but it selfishly hurts so much to see mine with her disappear.

She can now read so well and is absolutely thriving at school. She is super sassy and insanely crazy! She makes me so proud but I miss her desperately. I miss the months that I wasn’t here and I know I can never get them back. The weeks spent at the hospital, the times when I was here in body but my mind was always somewhere else to do with hospitals.

I threw myself into Ellis and getting him better.

Lily’s got a beautiful character and just gets on with things. She has a love for learning that hopefully will never change. She loves school and has settled back in with ease into her new year. She has to go to breakfast club and after School clubs every single day to fit around my work, but she never moans. Tonight I found a practice Kent test paper on her bedroom floor. She got 100%. She didn’t even show me. I’ve cried a lot lately, but this set me off again. Why didn’t she tell me? Why wasn’t she excited to show me? Did she think I would say I don’t have time? That kills me inside. I think back to things she has told me or shown me this last year and that’s exactly what I’ve done. “Not right now Lily, I’m just on the phone to the hospital” “Show me later Lily, I’m just trying to work out Ellis’ appointments”.

And then there is Beth. My mini me. The stubborn, funny, amazing eldest. She’s been pushed out more than the others, because of Covid and her dads we didn’t see her through the whole of lockdown. We kept in touch with FaceTime and texts, but I missed her so bad. I haven’t been involved in her schooling this year at all. She’s gone into year 11, the most important year and I feel like I’ve blinked and missed it. She is the most empathetic (not that she will know what that word means 😂) girl I know. The struggles she has faced have been huge, but she’s smashing life.

I feel guilty beyond any words can express about this year.

The impact it’s had on us a family is huge and I’m not sure if all of it can be repaired.

I have some serious making up to do with those 3 little ladies. I need to show them I’m here and not going anywhere. I need to get to know them again and start making memories.

I wish I could scoop them up and say sorry. Sorry for being a shit Mum. Sorry for not having time for you, sorry for not being the Mum you all deserve. But I had a battle to fight and I gave it everything I had.

Things are different now. I’m here.

And nothing is going to pull me away again.

Xxx