Visualisation

I don’t look back too often. I rarely look back because you live forwards not backwards. And let’s face it, our past is a long dark tunnel of constant torture and sickness for Daya.

I still want to be on that beach with all three children. I’ve always had that vision, or target fixation, in my head. I’ve had one eye on the present and another on the future. It’s never left me. The thought of them all running around on the beach, happy, carefree and relaxed, is the aim. All three of them. For some reason it represents everything that’s right and far removed from where we are now…

That vision has given me a quiet hope. It’s kept me focussed on a goal. Secretly, I also reconciled that it’s where I would take the other two in an attempt to move forwards if, sadly, they were no longer a three. Let’s park that thought as we are all thankfully still here.

A former Royal Marine Sniper, Tom, recently wrote the following which hit home. I didn’t realise that this is what I had been doing. I’m sharing it as I thought it might be very useful to someone out there. Focus on the future…

Tom, Former Royal Marine Sniper

Tom’s a fitness badass. He’s nice. He is currently based in London and is a personal trainer and nutritionist. He has alot of good advice.

You can contact him on reconfitness.tom@gmail.com for personal training enquires only. Not for dinners, dates or shameless disturbing requests for more pictures!

Mummy, what’s that?

I took Cost Centre #1 with me to GOSH. We were waiting for a friend to have her CT scan. After some lunch I took her to the chapel where Daya and I used to pass the time.

A: Why did you come here Mummy?

Me: It was nice, it still is. It was quiet. There were no other people here or crowds. It was shiny. It was somewhere to go.

A: what’s this Mummy?

Me: It is a tree. A wishing tree or a tree of hope. People write messages and leave them on there.

A: what sort of messages?

Me: go and have a look…

A: Tell me…

Me: Some people are thankful, some people are asking God and to help them, to save their child, some are saying bless every child, some are begging….

A: why?

Me:…because…..children can die here Anaya…go read the messages if you like, you can write one.

Her face said it all.

This is how you teach empathy. This is how you open up your child to humanity.

It hurt me. It didn’t give me any pleasure but I have hope that this child, who is taking everything on board and in her stride, will be a better human being for herself and the world around her as she continues to grow.

Together

If the whole world was watching I’d still dance with you
Drive highways and byways to be there with you
Over and over the only truth
Everything comes back to you

Niall Horan , This Town

I think some people are under the illusion that we are a respectable family. On most days this is correct. Well the children are (semi-) respectable. The truth is that these kids have one wild mother. When we are together it is busy and non-stop. I have every child’s meds, food, milk and school schedule in my mind.

I let off steam by dancing around with my children. I keep sane by playing music around the house. Do you remember we were the only family that had music playing in our room all the time? We would dance with Daya through her chemo cycles. This was to keep her happy and strengthen her legs due to the time she was spending laying down unwell. I play music in the car to and from the hospital. Music to calm her during painful, painful chemotherapy. Music is my therapy.

We would get visitors and nurses to dance along too.

I wish I was 9 years old again. Dancing around the kitchen with my Dad. I wish I was that kid again, joking around with my dad. He taught me to cook. He introduced me to my love for music. I miss that.

Me, 2019

They are looking after each other. Jasmine has started to say ‘my Twin-Daya’. I nearly cried.

Our cancer is a ‘young children’s cancer’. When a child dies, it is hard for a sibling to understand what’s happened.

I’m thankful she is still here. I’m thankful for the depth of love that exists in our little family unit.

This morning Anaya came in and held Daya’s hand whilst she was asleep. I recalled the funeral I went to yesterday.

And as usual, Saturday morning antics ensued. I got my cuddles, all my loves around me. Selfies below.

And then I put some music on and we had a rave at 8am…even Daya had the energy to throw some shapes.

To every oncology parent out there, I owe you more than the above. I’m coping just like you are. I know that every high is coupled with 5-10 lows. I do cry just like you. I cry away from my children. The fatigue is real. So is the boredom and loss of self. As is the love and relief gained from being away from hospital procedures and simply being together.

I’m not coping better than anyone just because I dance around and project a happy image to my children. Inside, my mind is still on the ward, I see the faces of our nurses, your children, our fearful discussions and the little coffins and the grief that is hard to suppress.

I’m trying to move forwards. But I’m not moving away from you. I’m trying to move my children’s lives forwards. I’m still here and there with you. My back isn’t turned. My arms remain wide open.

This week has been difficult

So we had a scan which was cancelled after ten hours nil by mouth. They Now need to have some results back before deciding if that one will go ahead or not. That was one of those nights where I didn’t sleep due to the nil by mouth times and NG feeds. Sleep deprivation is cumulative.

The day after was busy with things for Jasmine. The legend has been taking more steps towards independence. I’m proud of this child.

Then on Wednesday we went into GOSH again and Daya was talking non-stop as soon as this guy walked in. Her anaesthetists were awesome. Two of our favourites. This guy and another wonderful lady who was in theatre.

Observation time: she’s having her weight, blood pressure, heart rate, oxygen saturation levels and temperature done in this picture. This chap is so calm and wonderful with her. She shouldn’t be sitting here doing this. Life should have been different for her.

This is Ray. He’s ‘not Toby, he’s Way, Mummy’.

He’s lovely. Another who’s been there from the start. He carried Daya down to main theatres.

This wonderful Nurse, you might remember her as Nancy or ‘ancy’ if you are Daya. She saw Daya’s name on the list and came for some cuddles.

This is Daya’s best friend. From the beginning to now and onwards, this is the one person that makes her happy.

She was punctured in her pelvis. One side didn’t go so well so they had to repeat it. This is at least the tenth hole she’s had in her pelvis. Her skin is scared everywhere. She’s a fighter.

Thursday was busy with appointments for Jasmine. It was a difficult news day for us.

Friday, I attended the funeral of a beautiful boy. Our GOSH nurses were there too. Children fill our lives with so much love.

You might remember this room from two years ago. We remain in isolation. She stood here when she was learning to walk in her little baby grow. Her face was just above the window frame. Here she is pulling her own pump stand around.

Still here. Still fighting.

Everyday basic things

My night from midnight is going to look like this…I hope I get some sleep and don’t sleep through the 5:45am alarm. These alarms are going to be on three times this week.

I’ll be up until midnight anyway.

My week is going to be very busy with medical things at home and at the hospital. Lots of back and forth. Carrying all the feeds and meds and surplus toddler stuff. I’ll also be doing all the daily routine things as well. Chasing the car garage, the pharmacy, the team, reading the school book every night….I’m drained.

I will attend a child’s funeral at the end of this week. He was three weeks younger than Daya.

Enjoy your commute. Don’t fuss or care about people pushing and shoving. Enjoy your job. Don’t fuss about the idiots or political players. Enjoy your clean clothes and warm lunches. Enjoy the work you do and connect with everyone you meet this week. Enjoy the holidays that you pay for with the money you have earned. Take yourself and your children to far off places.

I miss all of that. I’m like an isolated, fatigued hamster on a wheel.

Conversations

Daya

Me: how was your day Daya?

Daya: it was good Mummy.

Me: oh wow that’s great. What was good about it?

Daya: I played play-doh with Nani, Mummy. I played play-doh with my Nani.

Me: Excellent

Jasmine

Me: Jasmine…Jasmine?

Jasmine: no.

Me: what do you mean ‘no’?

Jasmine: me watching Fireman Sam, Mummy.

Me: Ok

Jasmine: FIRE. FIRE. Oh no. FIRRREEEEEEE!

Me: Jasmine. Can you hear me?

Jasmine: No!

Me: *smiling at the fact that this profoundly deaf child can genuinely hear me but is pretending to not hear me at all…that’s progress *

Me: Ok. You can’t hear me. That’s a shame. I’ll eat your ice cream.

Jasmine: wait Mummy. Me coming.

Anaya

Anaya: Mummy I want some green tea please…

Me: hmmm. No go back to bed.

Anaya: but some green tea would be soothing before bed

Me: Oh god please help me…*the kids asking for Green tea…it was sushi yesterday. I used to eat kitkats or salt and vinegar square crisps or Wimpy!*

Anaya: no one can help you Mummy. I mean you don’t need help. You know how to make my green tea right? Make it like Jenn-Jenn does.

Me: No. Go. To. Bed. Please. Now.

Anaya: Daddy would make it for me…

Me: Shame he’s not here then eh…