Sisters

When I’m not here, on the days that are harder, love each other more strongly. Whatever happens, be there for each other. No matter what, choose the path of love and kindness. Talk to each other regularly.

I raised you with love. Even at my most broken, it was love and hope that kept me going.

I hide in plain sight. I smile in front of you, whilst knowing that I’m currently struggling to make peace with letting go of another mother’s daughter.

You can find a new husband, wife, partner, job, house, car….bury your elders…but you can’t heal from losing a child. Everyone else is just a moment in time. People get left behind for many reasons, you can (sometimes) make excuses for them. But your children leave a hole that can not be filled. There’s no vice that can fill it. There’s just a hollow inside. Only love can break your heart.

I hope you never go through what I have been through.

I took the picture above at around 5:30am. This is how I often start my days. Anaya was in all night, then Jasmine came during the night. In the morning Daya turned up. I don’t mind losing sleep for you. I love these moments. I like snuggling with you. You are so small, it’s like snuggling up to a little teddy bear. I hope when I’m old you still come and lay with me sometimes and tell me about your lives.

Watching you grow is my greatest gift. I never take you for granted. Don’t take each other for granted. Show love when it matters. How people choose to respond to kindness is indicative of how they have been treated in the past. Be kind, but choose to stay wisely.

Love each other and know that you were and are loved.

Jasmine’s progress

And then came the day that we could throw them away…

Years ago I had this vision of me walking into the sea at Holkham in Norfolk and flinging the Talipes bar into the sea like an Olympic shot putter…

That hasn’t come to pass but nearly two months ago during a video call, with our awesome consultant, we concluded that we could end treatment. We also donate the old boots to a charity that sends them out to be used in Africa.

This is how it was Jasmine. Me and you. Navigating the world of medical appointments, new hospitals, test after test after test, from one waiting room to another, bullshit bingo people to good people. I felt robbed and had this enduring ache.

I remember walking home from the train station when I was a little girl. On the pavement was a new born fragile chick. It had fallen out of a nest. It’s skin was translucent and it was making tiny sounds. The one thing I remember the most is how fragile it looked and how I didn’t know how to help it. I felt so useless. I tried. Over twenty years later that bird reminded me of you. This fragile little, vulnerable being.

This post is all about the 26+ plaster casts, two operations and 24/7 in plaster casts and boots and bar. I remember getting in the bath every Friday morning with my fresh surgical scar still healing. I’d hold you softly on top of me and I would soak your casts. It was very difficult to break the casts by hand. Anaya would brush her teeth nearby. I’d wrap you up in a towel and hold you tightly or put you on the floor. If your Daddy was home he would crush the casts quickly and take you. I’d get out and wrap your legs in cling film to keep the casts moist along the journey which was well over an hour and twenty minutes. I’d try and make sure your legs stayed warm, especially your toes. Your toes were always blue at the other side. I’d microwave a heat pack, I would put two pairs of socks on followed by mittens, I’d turn the air con on full, I tried everything. They were shockingly bluey-purple. You don’t forget some things.

I researched and found the best team for you. I found the best consultant. She has been awesome; I’m allowed to name drop as it will help others, Christine Douglas at the Royal National Orthopaedic Hospital in Stanmore. Our journey began with her assessing and plaster-casting your feet. Daya used to come along too. She used to sit quietly in the pram and watch us. They all loved her there. Once they even used you for an international training conference. You were great. You had your feet casted ‘live’. I was proud of you. You were teaching others from around the world who were going to help other children.

I would walk half a mile in the freezing cold from the car park to the plaster room. It was an old military base. I was lifting a heavy double pram. I had a new c-section wound and in hindsight I shouldn’t have been doing that. There was very little choice in the matter. I needed more time to properly heal post surgery. Now, after all this time, I’m learning that these are the reasons you should take better care of yourself; but parenting doesn’t always allow for self-prioritisation. They don’t go hand in hand.

I remember people crying in the waiting room. Looking forlorn and distressed. They only had one thing to worry about. Just one thing to try and make better.

It’s funny how something so important for one person can become so commonplace for another

You kept the plaster casts on for weeks and months. You had two operations. It hurt me to see you entrapped and weak. It hurt me to hear you cry when a particular lady would change your casts. With another, who was softer and kinder, you would sleep through or stay quiet. You kept your boots and bar on day and night. These big heavy clumpy things would get in the way. It also meant you couldn’t turn over from front to back or vice versa. They could also get caught in the cot rails. We had to separate you and Daya into your own cots. You would look at each other through the bars. I hated it. I hated all of it. I carried on feeding you and cuddling you with the boots on. It is called Ponsetti treatment. I’d cry when I’d put you in the car seat to go home. You were stretched wide and awkwardly. Some of these appointments were not nice and it was all draining; but I’d look at you and you looked so small and fragile and sweet. You looked vulnerable and I didn’t know how to make things better. I learnt everything I could along the way as I didn’t already know how to be a good mother in some areas. I’d never experienced any of this before. This was all new to me and I knew I had to learn quickly and do everything I could; I was scared and I was exhausted but I stayed calm.

You would look at me from the pram. I couldn’t explain anything to you. You couldn’t hear anything either. I made every effort to keep you close; and to stroke your face and to keep you snug in the baby sling when I could. I was going to let you feel my love if you couldn’t hear it. We had to have your eyes tested to make sure you could see; to make sure that you weren’t blind. Still, I held you close so you could feel my love and not feel alone.

7:30am. We were at the hospital and you were bundled up nice and warm. I had only had an hours sleep so I asked your Daddy to come along too. Also because, it was one of those bad news appointments. ‘Your daughter is profoundly deaf, yes it’s definitely not going to get better’.

We will save the deafness journey for another post. I hated strapping you into the boots.

Before Daya was diagnosed, we used to go to up to 5 different hospitals in a week together. It was draining.

You were supposed to wear the boots and bar for five years. Due to the fact that you have made such good progress we are ‘busting-out’ over a year early. We were strict with our treatment protocol. I switched off my hurt feelings and became clinical about it because I had to. I hated strapping you into those boots. I’d check on you many times at night to make sure you were not trapped or on your stomach.

I hated every minute of it but I knew I had to do it. Things happen in life. You just have to get on with things. You never complained and nor did we.

You’re awesome. You’re a legend and I am so proud of you. And thank you, I feel so full when you’re around; Im bursting with so much love and pride when I look at you. You never fail to amaze me. I find myself smiling in your presence. You’re a wonderfully engaging little person. There’s something special about you.

I never tire of watching you. I find myself smiling often, nearly always. I’m so glad you’re mine.

The Out-takes

Reading at bedtime. I was sitting in their bed and we were having a chat.

Me: Yes you were in my tummy.

Jasmine who is laying down relaxing, sits up suddenly, looking shocked: Whaaaat?!!! You ate us!!!

Me, equally shocked: No! Noooo! No. Noooo. No. I did not. I did not eat you.

Daya silently eyeballing me…waiting for an explanation. Her face full of disbelief and distrust.

Jasmine looking slightly worried.

Me: No I did not. I only eat chocolate. I did not eat you.

Jasmine: silence.

Me: Goodnight babies.

*****

They were looking at pictures on my phone from when they were babies.

Daya: Why do you have your boobies in my face!

Jasmine: Let me see Daya. Why….why are your boobies on my face???

Me: I used to feed you. Sometimes, together at the same time. You would hold hands above your head.

Jasmine: You have big BIGGGGGGG boobies and Daddy has tiny, tiny boobies!

Daya: yeh his teeny boobies they move when he’s a skippin’.

Me: Oh my god. (I was laughing).

Them: Tell us why you have big boobbbbbieeessss

Me: Stop it.

Them: Singing loudly and dancing: BIG BIIIIGG BOOOBIESSSSSSS

Me: I gave you milk when you were small and Daddies don’t do that. So they have tiny boobies.

Them: Huh? Like a cow? Nani said cows give us milk in the bottles.

Me: Oh. Ummmmm. Ask Nani all about it then. Go to sleep now.

Daya: BIG MILKKKKKKYYYYY BOOOOOOBIES!!!!

Me: stop it.

Daya, hands gesticulating: come on Jasmine. Say it. BIGGGGGG

Me: Sit down Daya

Jasmine and Daya: BIG

Me: Stop it. Lay down both of you.

Jasmine and Daya: MILKY BOOBIESSS.

Me: Ok. Carry on. Carry on. Just carry on.

*****

Someone: What’s your daddy’s name?

The babies, together: Anu

What’s your Mummy’s name?

Loudly, together: BIG BUMMY MUMMY. BIIIIGG BUMMMY MUMMMY.

Me, mortified and mumbling: Oh god please. Take me. Take me now.

Anu laughing so hard he’s crying.

Me: shut up will you. The more you laugh the more they do it. And they tell everyone.

*****

Daya: My daddy works all the time.

Someone: what does Daddy do?

Daya: He works all the time….

Me: Does he do anything else?

Daya: he does……..his skippin’, runnin’, drinks his shakes, he works. He tells mummy off all the time.

Someone: what does Mummy do?

Together, loudly: She has BIG MILKY BOOBIES. BIIIIIGGGG MILKKKKY BOOBBBIES.

Me: MORTIFIED. Silent and mortified. Speechless. Shaking my head.

The babies singing and dancing: Mummy’s got big milky boobies….boobies….big….big boobies

Me: No. stop it. what does Mummy actually do alllll day?

Jasmine: You do the shopping on the Avacado (ocado) …

Me: Thank you Jasmine.

Daya: Mummy’s got…

Me: No. NO. Stop it.

*****

Them: Daddy has teeny tiny boobies. They move when he’s skippin’. Mummy has BIGGGGG

Me: Stop it.

Them: BOOOOOBBBIESSSS

Me: did you teach them this?

Anu: Nooooooooooooooooo

Me: This is getting embarrassing. They are telling everyone. Anyone who will listen. They were singing it when the Ocado guy came! Someone random was passing our drive and they told him. I was mortified.

Anu bursts out laughing.

Me: This is your fault. I bet it’s your fault.

Anu: I said nothing.

*****

The girls were on the front drive and a man was walking by. He was talking on his phone and walking towards us.

Daya: Mummy that man’s got boobies too.

Me: shhhhh Daya. Get inside. Stop it right now.

Daya: No I want to pretend- drive in the car. Look Jasmine. There’s a man with big boobies.

Me: shhh right now. I mean it.

Man gets closer.

Jasmine: Yeh Daya. He’s got boobies like Mummy. Bigggggghhhh one.

Me: RIGHT girls. Let’s go home. (I then pick both up to take them inside quickly)

Both together: But we want to stay here.

Me: No. Stop talking right now.

Thankfully he didn’t hear them.

*****

Me: you need to talk to your children and tell them off!

Anu: *silence*

Me: I mean it. They don’t listen to me.

Anu: *silence*

Me: They were talking about some guys boobies!!

Anu: hhahhhahahahahaha

Me: Its not funny. Do it now.

Anu: hahhhahahah. What did they say? Pam they are three.

Me: No. Just go and tell them not to say things like that. They are like a comedy act. And Jasmine repeats what Daya says. And actually I nearly burst out laughing.

Anu: Ok.

Me: Do it.

Anu: Babies what did you say outside.

Babies: Nuffink! Mummy told us we couldn’t play in the car.

Anu: Did you see any boobies?

Me: shakes head.

Babies, excitedly: Yes Daddy. We saw a man with big boobies. They were movin’.

Anu: bursts out laughing

Me: Yes. That’s just great. Thank you for your input.

*****

Daya: My daddy does nuffink all day. He just skips and works. He works.

Jasmine: …and Kettle bells Daya. And he gets sweaty.

Daya: yeh and he makes funny crazy sounds when he’s ‘working out’.

Jasmine, mimics a kettle bell swing: uh uh uh.

Daya: ahhahahhh

Jasmine: uh uh uh uh arghhhhhhh.

Me: laughing so hard I’m crying.

Jasmine: Look Daya, Old Lady is laughing.

Me: You what!!?!!!!!??

Jasmine: Daddy said you called Old Lady.

*****

Me: OWWWWW

I turn around and they are standing there with kitchen tongs. One each.

Me: That hurt. Did you just pinch me with that.

Together: No

Me: Don’t do it. It hurts.

Daya: but mummy….they like your bummy…

****

I was getting changed downstairs in the playroom. I had just come out of the pool.

Me: Why are you watching me ?

Daya: I’m not. I’m looking at your boobies.

Me: hmm.

Me: Jasmine stop staring. Drink some water.

Jasmine: you got no knickers on Mummy.

Me: I will in a minute.

The door bell rang. I quickly put a dress on and ran to the door. Ah the Amazon Prime man. The same one that comes a few times a week. (The one I will have to see again!)

Both together: running down the corridor.

Jasmine: Mummy’s got no knickers onnnnnnnn

Me: Daya don’t corrupt Jasmine.

Daya: Mummy’s got no knickers on. Annnnndddd she’s got no ‘booby-holder’ on.

Amazon Prime Guy: Smiling. Eye brows raised. Smiling.

Me, not making eye contact: Err. Yeh thanks bye.

Me: Stop it you two. I mean it.

Daya: She’s got no knickers on Jasmineeeee ahahhhahhhah

Five minutes later:

Me: OH my goodness. This man! Anaya. He’s been eating nonstop for the last two hours.

Anu: No I haven’t. This is my second meal of the day.

Anaya: No it’s not. I gave you ice cream.

Me: Umm Umm Ummmm. That’s right girl. You speak the truth. High five to you.

***

Daya: Daddy’s telling Mummy off.

Me: No he’s not. What does that even mean?

Daya: He….he is telling you off. He’s telling you to clean the kitchen and the dishwasher and annnnnd anddddd he told you to make a coffee.

Me: No he was telling me how he did all that and hinted that I should make a coffee.

Daya: because you didn’t do it.

Me: Whoooaaaaaa. Never stand between a man and his cleaning Daya. Never. Let them get on with it….and hide away somewhere when he’s cleaning…

****

Me: Anaya, so how’s life treating you…living here with us? How’s it going for you?

Anaya, looks at me as though I’m silly: Good.

Me: are you sure? Anything else?

Anaya: Crazy….and fun?

Me: Ok so it’s good. Any room for improvement?

Anaya: ahaha No.

Me: what about me? Am I doing a good enough job?

Anaya: YES.

Me: any room for…..

Anaya: No you’re great. You’re better than great.

Me: Silence. Excellent. That’s me done then. You’re amazing. I love you.

***

Me: Wow Daya did you dress yourself?

Daya: Yes. Anaya helped me.

Me: Daya let me take a picture for Nani…..smile…say Cheese or Sausages….

Daya: Millllllkyyyyy Boobiessss

Me: ahahhhhh that will do.

Morning snuggles

I took these pictures.

From stage four metastatic, rare and aggressive ‘please don’t die’ to traumatised and ‘thankful you’re here’.

I’ve cried because of fear and I’ve cried because I’m overwhelmingly thankful.

It has all been a test of love.

Daya’s Burpee Challenge

September is Childhood Cancer Awareness month. Would you like to help us to raise awareness of Neuroblastoma?

We are launching Daya’s International Burpee Challenge In partnership with Solving Kids Cancer. The challenge is a global initiative and will run throughout the month of September. It is a fun and flexible challenge. Currently Daya’s scans are clear. Neuroblastoma is an aggressive cancer and the survival rates are not favourable. All funds raised will provide Daya with an opportunity for further treatment should she need it. All funds not used by Daya will be used by Solving Kids Cancer to fund research into neuroblastoma specifically and to support other families.

What we would really like from you is to raise awareness of Neuroblastoma and Solving Kids Cancer. There is no target or minimum amount for you to raise. Many of you already know some of Daya’s story via the blog. You also know of the heartbreaking reality that many children have died along our journey. As a family we would like to continue to play our part to ensure that no other child or family suffers as we have and in the longer term we would like to find a cure.

What is a Burpee? It is a fitness activity. Please see below.

There is no registration fee. You can donate without doing a burpee, however, we thought it would be more fun for your friends and family to watch you doing them.

https://www.justgiving.com/campaign/daya