The world is big and I am small…

The buddies were back together. Chatting away. Deep in conversation. Looking naughty. They went to the park early in the morning with me. Daya now dictates the route. ‘This way…this way’. We met the squirrels and fed them and then we went to the birds and Jasmine ate the birdseed whilst Daya threw it all over herself.

Jasmine and I spent some time making grapes with play doh. It was our speech and language session. We chilled out in the sunny spot and just hung out and played with each other. I’ve missed her a lot. She’s very engaging and friendly. She draws you in. She’s a delight. I love her.

Daya: OMG mummy is this sister of mine going to stop blowing raspberries in public?

Jasmine:

Daya: mummy tell her. Please. She’s making fart sounds now with her raspberries. Mummy. Mummy she’s licking the crumbs off the snack tray. This is embarrassing. I can’t believe we are related!

That moment where you are hurriedly putting on their shoes and suddenly another foot appears out of nowhere to confuse you for a moment!

Sharing is caring.

Later in the day, not too long before bed, Daya walked up to Anaya and said ‘Naya, love you. Love you Naya. Love you. Cuddle. Hug Naya hug’. She loves Anaya a lot .

Mum Guilt

Me: I just feel as though …. I’m a shit mum now. I have been for nearly a year. I can’t give them what they need anymore. I don’t have enough.

Agnes: You’re not a shit mum. You are a brilliant mum in the worst of circumstances.

Well that killed anything else I might have had to say. I don’t have much to say these days.

I carry a guilt though. ‘Mum guilt’.

I wanted to do more with my kids during this summer, this season, this year and these years. I’ve been robbed of these precious years which we will never get back. I’ve also got to enjoy some amazing things. What I wouldn’t give for a ‘normal’ life.

I’m not who I was. I’m deeper, slower, more developed, more full of hurt and sadness and different. The light inside has dimmed. The unfairness of it all is overpowering sometimes. But I must not complain.

But, nonetheless, I keep smiling as much as I can. I sing songs and dance around with my kids. I stay focussed so the hurt or fear doesn’t come to the surface. But it does. I cry.

I can’t be the mother I wanted to be. I can’t do the things I wanted to do with my kids. No swimming pool sessions, or short trips or plane rides. No music classes or play dates. Mainly isolation, hospital appointments and therapy.

No playing with other toddlers. No meeting other mum mates. We just watch from a distance as everyone else’s lives carry on ‘normally’. The zoo trips we can’t go to, the parties we cant attend, the coffee mornings I don’t make…it’s a lonely place.

And I also feel like a crap mum. A mum who doesn’t have enough to give. Once I’ve administered the milk pump, flushed the line or given some meds and, once I’ve made sure Jasmine is safe by being in contact with her all the time, there isn’t time or energy for anything else. There is no flexibility or space to just be present and connect with Anaya as I would like to. We often have to wait til bedtime to read a book and chat – by then I’m struggling not to fall asleep in her cosy bed with her.

Cancer is a demon that comes and swallows up everything. I can’t enjoy now without the cloud of loss over me.

My girls, I want you to know that I tried. I know it wasn’t good enough, by my self-appointed standards, which in turn wasn’t fair on you, but I hope you know I tried. I tried because I cared beyond your ability to comprehend. And believe me I did the best and will continue to do the best I can. There hasn’t been a day when I’ve woken up and been lazy about anything to do with you. You inspire me everyday with your resilience, laughter and dedication to all things fun. All three of you are so determined and so loving – I’m proud of you all. You keep growing and I’ll keep trying and trying.

August 29th

August 29th 2017 is the day that our baby daughter Daya was diagnosed.

Waiting, sitting in that room, hearing those words – we broke. My life fell apart within seconds. It’s been a whole year since she was diagnosed and so much has happened. And she is still here. We will fight on. It has been a torturous year.

August 29th 2018

Unbelievably, a year later to the day that Daya was diagnosed, Daddy was given some very sad news about his father. After seeing a little improvement over the weekend, things declined again and the doctors called to advise him to start to make ‘End of life plans’. Grandad won’t be coming back to us. Grandad is dying.

Very happy meals

After asking me over and over again,

Me: look, just listen, if you are really good I’ll take you for a happy meal but you can’t tell Daddy as soon as we get through the door ‘hey guess what daddy mummy took me for a happy meal at the driving in place’, understood?

Big sister: OK. I know he says it’s not healthy so I won’t even tell him anything. That’s a plan. That’s a good plan.

Me: okay let’s get something healthy.

20 minutes later, on the way home,

Me: don’t you think Daddy will know where you’ve been?

Big sister: No

Me: ummm those glasses? What are you catwoman? Don’t you think he will know where you have been?

Big sister: Mummy, listen to me, these are cool. He won’t know. Anyway, you’re the grown up you should not have taken me there. You’re driving. We can’t all have his special protein shakes. We need to eat real food.

I love this kid. I wish I came out with her one liners.

Enduring love

For a long time now, I have been saying I want to be able to ‘take things for granted’.

But I think, maybe, that’s not such a good idea. What I really want is to not have the worry or the relentlessly draining side-effects of having to look after two unwell children; and not being able to spend as much time with the third.

If I bimbled along through life with not a care in the world and taking things for granted, I wouldn’t experience the intensity of love that life has to offer. Sadly, the law of equals and opposites denotes that I should thereby have to feel the losses associated with such grand or deep loves.

I’ve never really been in a privileged enough position to take things for granted. There’s always been an awareness of the fragility of life but never involving my own child. That is, until now.

And what a privileged position to be in that all you might worry about is a temperature of 39 due to a winter viral infection or a broken arm off a climbing frame. As unnerving as these things may be at the time, the body heals itself. They become mere anecdotes in the passage of time.

Time, brings me on to my next musing. Life and time are so fundamentally interconnected. Life is a measure of time. Doesn’t everyone work out the age of someone on those park benches installed by loved ones? And I often think to myself, be it sitting in traffic or in the hospital, ‘what’s that person doing with their life?’ I look out the car window and watch them, some rushing, some strolling off to wherever.

What we do with our time is so important. And I don’t mean the time you have for your annual 25 days holiday plus weekends. I mean all your time. All your finite time and it’s infinite possibilities.

I mean seriously, what good are you doing everyday for yourself ? and others?

Taking selfies, instagramming the shit out of life, creating your Pinterest moodboard for your nursery/bathroom/kitchen-diner….it’s not what I’m talking about. How do you spend your time? I challenge you to think about this in your bored moments and ask yourself how much are you ‘just going along with things’.

I’ve been particularly touched by the messages I’ve received over the last year from friends and strangers, who after having read the blog, have said and done some of the following;

– I’m a better parent now thanks to you. I stop and think. I don’t beat myself up so much. I don’t complain or lose my shit so much anymore. They are a total bunch of nuts though, my kids are nuts.

– I took off a whole week of unpaid leave at Christmas and did nothing other than spend time with my kids. We made plans, I put the phone down and was present. I thought of you guys often. I talked to my kids properly. I can’t imagine what you go through. I cuddle them so hard at night and fight back tears if I think of your girls.

– I think of you everyday and try and find beauty, little bits of beauty, in the world around me. (I’ve received pictures of a four-leafed clover, ladybird on a leaf on the way to school, a rainbow, a dandelion…and some missing cows)

– I look at my kids differently now. I’m glad I left him when I did and it’s been a struggle but Daya makes me realise how everything is temporary and I’m all about my kids. Everything. There is no catching up later.

– I don’t complain about a thing. My problems have evaporated. If I feel like I’m having a bad day… I just read your blog!

– you’ve made me a better doctor/Nurse/ parent/ grandparent/ person – I’ve learnt to see life differently. I was half asleep before and I wouldn’t have understood things from your perspective had I not read this. I’m so much more caring, careful and considered.

– Daya’s changed me. I can’t explain it. I’m changed. Not a day goes by when I don’t think about this. We think about you everyday.

– I’ve given up my job. Life’s too short. I’m going away for 18 months. We are all going. Your story has hit me so hard – I can’t do this for the next 20-30 years. Life is too short. I need to live, I can’t exist like this anymore. The whole family are off.

My personal view on this is that it’s not me that’s had the impact. It’s my kids and the agonies that they have relentlessly had to endure. Let’s not forget this. It is not me. It is these brave, enduring little beings.

Life is cruel.

Go enjoy it. Strive everyday to be present. Make plans with the kids even if you can’t always stick to them, you’ll know you tried your best.

Anaya has 13 summers left until she goes to University, when she leaves home and embarks on a new adventure. There will be more adventures before that however when you think about it like this, life is short and childhood is short. Make the most of it while you can. Go and live, learn from our situation, you need to be out there taking pictures. I’ll still be here picking up the pieces.

I still have hope, for better days and all of us in my family photos.

Smiling back

Today, as I was walking into the room, I stopped in the doorway, she looked back at me from where she was standing at the coffee table. And she smiled at me. A big broad smile. I looked at her and she stood there still smiling back at me.

And I thought, you’re beautiful…. and ….and you could not be here next year. Just like the other kids we know who are gone to soon.

You could just be gone and I want you so badly to be here.

I turned away because I was starting to cry.

What if everything we do and are trying to do isn’t enough?

Life has been so cruel to us. So much has happened. I just need you to be here. I need to know you’re going to be ok.