Shampoo & Soap

Our nanny knows I’m missing out on so much, so she makes sure I always get the fantastic gems Anaya comes out with, last night it was this…

Anaya this morning upon seeing my postman

A ‘He should really have a hat on. It’s cold.’

J ‘you don’t have your hat on!’

A ‘But he’s bald. Does he need shampoo?’

J’ Well he could use soap? But what if he has hairy arms?’

A ‘Yes! People have hairy arms sometimes! So he needs soap for his head and shampoo for his arms!’

😂

Daddy

We had another emergency. We had to call the fixer. We rushed out of the house to an ambulance to our local and here we have remained. Our home away from home. She has an infection somewhere. She is on three antibiotics. Our team are wonderful.

I’m at our local hospital with Daya. I’m looking tired. More on us later…If you think I have it bad, Daddy has it worse.

Just today, Daddy got up early and looked after both of his girls. He did Anaya’s plait whilst stopping to stroke JJ’s toes. JJ was laying on the sofa next to him. J was having her warm milk and Anaya was almost ready for school. He put his suit on and went across town. Normally he would pop in to see us at the hospital and leave early. Today he went across town to see his father. His father is dying. He went to a hospice. A place he has never been before. After that he went to work. After that he rushed home to put the girls to bed. After that he planned to visit us but I told him to rest. He will probably work. Then I told him to pay the car tax which I had forgotten to pay as I thought I would be home to do it this week. He cleaned up the kitchen a bit.

The day before he came to the hospital in the morning, then he went to work all day after which he then he rushed home to get the girls to bed. Then he worked until 2am. Then he got up at 4am to feed Jasmine and then again he was up at 615am and he got them ready before he went to see his dad….

That’s just two days of his life. Our lives at home or at hospital are relentless.

So now we have a funeral to think about.

This time last year I was replaying the start of Daya’s eulogy in my head, what song would represent our feelings, how would we cope, what would we tell Anaya….how long would it take me to move on, how would I stand in Sainsbury’s and be back to the old me….

Our lives are relentless. Day after day after day.

Life is too short. It is fragile. Use it wisely and fill it with kindness and love. Be honest and decent. Be accountable if you are wrong. Have a beautiful relationship with yourself and with others. Make sure you see and feel love around you. Every. Day. Make yourself smile. Be kind.

Radiation: The Prep Scan

Today we headed to UCH for our radiation prep scan.

The good news is that she has regained a tiny bit of weight. I was so happy to see an extra 20g. I could have cried. Our feeding and medication routine is intense; we take it in turns and it’s day and night. We are exhausted.

She vomited on herself during the drive down in the morning. It is not easy vomiting whilst strapped in a car seat. She was nil by mouth again. I miss Home (gosh). This new place is a change from the norm. Our staff, on the ward today, were delightful and friendly. You might recognise the view. This is where Jasmine was almost a year ago.

Mummy and Daddy star, who were broken (it’s a sign, it’s a sign), and the babies underneath. The perfect number of hearts randomly on the windowsill in our room.

Daddy came for a bit in the morning and then went to work. It was a cold, foggy, hazy start to the day.

We passed the time today doing a few things. Waiting, resting, crying and playing. Mainly playing.

She has three tiny little, tattoos on her. They have marked her with dots for the radiotherapy treatment.

You might ask, well what will they be treating if the abdominal tumour has all been removed? They will be treating the surrounding area where there might be microscopic remnants. They will also be damaging the entire area, organs and spine. There will be long term side effects.

She was sedated and I had a quick cup of tea. 45 minutes later she was snuggly asleep in recovery.

A few hours later on the way home…

We popped into the UCL Staff Common Room for some exceptionally well-timed random banter. Tom bought along his favourite Hey Duggee magazine with stickers.

The newest and youngest honorary member of staff was introduced to one of the oldest (ahem), longest serving staff members. You don’t get to see someone for a year (maybe two) and suddenly, you’re home again. Best ten minutes in a long time. I am far removed from where I was just a few years ago. I miss it but I have no choice in what is happening now. But I realised today, I’ve still got that fire for change and progress inside me.

These two caught up on music and mayhem.

It was a quick ten minute visit on the way home. I had to rush back to Jasmine who wasn’t well. Daya’s blood pressure has been creeping up again. More things to keep on top of.

Perfection is a perfectly timed fist bump.

Back home ‘Princess’ Jasmine needed a lot of cuddles. And this year Anaya wanted to put a ‘fake’ tree together. I have encouraged her to not go for a tree that has been chopped down however I’m not sure how eco friendly our fake tree is. At least I won’t be sweeping up pine needles! Given that we have missed Christmas for the last 5 years due to being in hospital every single year, I’m happy to put the tree up in November. I think we will miss Christmas this year too as radiation will run over.

So Daya found herself a new home. She still really is very small.

She sat in the empty tree box munching her snacks whilst Anaya and I quickly unfluffed a 7 foot Christmas tree at 8pm on a Friday night.

Hearing age: 10 months

A year ago I sat here and cried. No longer able to contain my sadness.

I’d just been told that in addition to her hearing issues, Jasmine wouldn’t start to walk until she was ‘around 6 or 7’. I was given this enormous news, in a summarised statement, at the end of our appointment and sent on my merry way. I think I was in shock at the ease with which our lives were unravelling. I sat here to feed her before we drove home. She looked small and beautiful. She was living in a world of silence. She looked at me with her big eyes and smiled. I broke down. I broke down right here. I felt very ill equipped to give her the future she deserved but I would learn.

I tried not to cry because she was looking at me. I wept. When we left I cried on the way home. I didn’t call Daddy. I couldn’t even work out how to tell him.

Fast forward to yesterday. Same table. Same pram. Same chairs.

Initially, I was often sad waiting here. I’d watch the other kids and work out how they communicated. I’d watch them signing or listen out for their speech. I’d look out for which processors they were wearing. I would often feel out of my depth and unfamiliar with things around me during those early days. With time that changed. With the support of excellent staff in the Cochlear Implant team we found our best way forward. I also went on a few courses with the NDCS.

Today, I walked in and could have cried again. I was overwhelmingly happy. ‘Elated’ was the word I used. I was so proud of my little monkey.

She was on good form. She was wobbling around everywhere but was doing it fairly independently and enjoying her freedom. She was calm and confident. She was exploring and saying hello to everyone. It was a complete joy to watch. She was trying to say some words. She had cried in her carseat almost all the way down. Now she was out there was no stopping her. She has come a long way. She is a fighter.

She was exploring everything and engaging with all the staff. She fell over. She bumped her face but she kept going. She cried. She kept going. She rocked her Christmas sweater.

She’s never seen a PC before. She thought the mouse was a phone on charge. Give it another 15 years…she’ll be inventing a cryptocurrency.

20 years from now:

Jasmine: “Hello….dis iz GCHQ…I have ze codez to your country”

Anaya: Jasmine can you hack into Daddy’s PayPal account?

Jasmine: No. Daddy doesn’t have a paypal account. Mummy does.

Anaya: …how do you already know that? ……..Are all those deliveries to the door… for you? I’m telling Mumm……

Jasmine: *click*

Anaya: Jasmine….wait did you hang up on …..me?

At the end of her call she signs, ‘thank you’. I love her. I love her. I love love love love her. She’s my little hero.

Her team are wonderful. R and M are awesome and so playful and fun. You have to be to work with kids. Some tick boxes and some come to work everyday and are fully engaged in every minute. They worked together to entertain Jasmine whilst running a whole range of tests in the background. I was so happy all the way through. For the first time ever, I was able to sit back and just watch. She was exploring and they were testing. They made it fun and easy. She’s great. She’s fun and engaging.

We had another session afterwards with our speech and language team. All these names and all these teams are things many other parents wouldn’t come across in a life time. They get to bimble among through life worrying about the spec on their next car or which hotel to choose on holiday.

Anyway, the next team let her bathe a baby in a plastic tub! With ‘real’ water and a fake baby. This was fun for her. I didn’t get any pictures as she was very tired and hungry by this stage.

Back home, Jasmine saw a picture of her playing with the gentleman in these pictures she stroked his face on my phone and said ahhhhh. She then pointed to the front door and went to get her coat. This is love.

She did very well. She hasn’t been well for a few days. Sleep has been scarce. She fell asleep just as we got home!

The heart of a giant

To maybe hear or to never hear again?

That was the question. This time last year Jasmine underwent surgery to have her cochlear implants inserted. Our surgery team were truly amazing.

I’d been through hell the previous 12 months. Nothing like what we are going through now with Daya but it was a pretty bad time. A lot of things to deal with, come to terms with, grieve, rationalise and fight for.

Our Teacher of the Deaf (more explanation on her role some other time) proved to be a stable, quiet force of guidance and support.

Jasmine had her cochlear implant operation just over a year ago. Even then, as I stood looking out over the city, having left the other two kids at home with Daddy….I wasn’t sure if I was doing the right thing for her.

That’s the truth. She’s deaf. She belongs to the ‘Deaf’ community. A chap called Russel gave me an introduction into the ‘Deaf -with a capital D – community’.

Nothing is going to change the deaf aspect….or so I thought. You see, I wear glasses to see. I wouldn’t dream of not wearing them to drive a car. She wears CIs to hear. It’s all corrective to become standardised or adaptive to your environment. That’s what I told myself. That’s why I said yes and because saying no may rob her of something that she may not otherwise get, but want, later on in life. What we were doing with respect to the operation was irreversible. And the best time to do it was during her ‘speech window’ which is open at its best from 0-3 years.

It was a long, detailed assessment and I had to push hard to get it referred and started. Looking back, I can’t believe how much energy I had to give to it. Once I pushed it, the team we went to were wonderful.

Today, a year later she’s raiding the kitchen cupboard and saying ‘Bikit’. I noticed a significant difference when I came back from NY. I had left her in safe, loving and capable hands. She’s morphed into a little version of my Mum and her Nanny. But I noticed a good difference.

I recall looking out over the city and thinking these things often make us all feel so small and insignificant. These big views. For the first time ever, I felt as though I had the heart of a giant. It was swollen with love after this little bear’s surgery. She was so brave and so much fun. Post surgery she was sitting up playing with a light-up wand. She had no idea why she was there, how long it would take, why she would be in pain and what would happen next. But, I did.

I remember saying over and over again, ‘am I doing the right thing, is this what we want to do, how do we know if we don’t have enough experience…because we are potentially given her access to one of the five vital senses we are born with, she does need it, it will open up her world or it might not work at all’. I was sad to lose the old Jasmine.

Immediately post op in recovery. Looking back on it she hardly complained. She was very small. Daddy was at home with Daya and Anaya. Daya was post chemo awaiting stem cell harvesting.

“Can we pretend that aeroplanes, in the night sky, are like shooting stars….I could really use a wish right now, wish right now’.

I wished that she would have the gift of hearing. That she would learn to talk and engage with us all. I wished Daya’s Cancer would go away quickly and that it would all be behind us. I remembered Agnes’ wishes too.

After their time in Nicu, we made a wonderful friend. Chrys. Her baby was born at 27 weeks. He’s beautiful. I’m a NICU veteran and I could see she was going through the same forest I had been through. I was scared to reach out and also drained. It’s a raw situation when it’s your first child. Anything can make it harder. I didn’t know any details and I just wanted to be in and out of there safely.

Our babies shared a room. She watched us, from afar, dealing with a lot. It also turns out that her parents are both Deaf. In fact, so are other members of her family. At the time we didn’t know Jasmine had a hearing loss. She taught me some signs and she made it all the more familiar to me. I ran questions by her, I learnt some signs and I was accepted for being part of the Deaf community whilst not really having a clue. Her Mum makes me smile. She appreciates my basic signing. She accepts me and encourages me.

I remember Anu being annoyed with a staff member one day. It turns out that Chrys’s Dad had been buzzing on the door trying to get in. He couldn’t hear them on the intercom, so he couldn’t respond. So this happened twice more as Anu was walking up to the door. They would have seen her Dad on the camera but no one went to the door to check. They would also have heard from his voice that a repeated effort to communicate was being made but no one came to the door. Anu buzzed him in. He has always stood up for people that need support, I understood his disappointment. Weeks later we found out Jasmine was deaf.

I went from never having truly communicated with a deaf person to having a whole new (deaf) family supporting us.

Two days after Jasmine’s operation Daya was admitted into GOSH for her stem cell harvesting. That was a bad week.

The rave

Anyone to us: ‘oh you need to try and get as much rest as possible. You’ve got a lot on’.

Me:’. ‘

(Me inside: ‘no shit Sherlock’)

11:56pm (that’s midnight to normal people)

Me: Anu there is some sort of kid’s toy making noise downstairs.

Anu: it’s Daya. I just quickly came up to get a syringe. Daya’s playing.

Me: Anu why is she having a rave at this time. The other two are asleep. My eyelids were closing and she suddenly woke up. Now she’s downstairs having a massive rave up with you. Why. Why.

Anu: Hahahaha…..she’s having fun though….hahaha

Me: she’s calling you now. OMG this is not the time for a rave.

20 minutes later….

Anu: I need to go to work in the morning.

Me: I need to go to sleep in someone else’s house!