We began a new life the day she was diagnosed…

Not a life we chose, not a life we wanted.

We had normal lives before… we worked, the kids went to school. The evenings and weekends were filled with parties, playdates and sports clubs, all for the kids of course.

She became tired, and pale. She looked like a drug addict. Little did I know that soon, she would become a drug addict. Addicted to morphine, crying for the next dose to dull the pain.

After a few false starts at the GPs, I finally convinced them to test her bloods. Test her for everything, I said. Then came that phone call. You need to make your way to the hospital in the morning, more blood tests, I was listening intently, but not taking anything in. Doctor, what are you thinking? A pause, just a bit too long for my liking… A pause long enough to make my already fast heart go even faster. Well… another pause. My heart was racing. I was holding my breath. Well, she will need more tests but it looks like leukaemia. Now I don’t want to breathe, I don’t want to continue down this path… I liked the one before… If I didn’t breathe, it wouldn’t be real… Hello, are you still there? The doctor was now waiting for me. Yes, I’m still here doctor, what does this mean, what happens? I ask a million questions at once, none of which I actually want the answer to. The doctor wrapped up the phone call and I was left with my own thoughts for a while. I was being deafened by my pulse, my throat didn’t want to stay open and my lungs didn’t want to play anymore. Ok, pull yourself together, this needs sorting… I go into ‘mom-mode’. It’s my defence mechanism. I plan, I organise. Mom-mode is glitching out, mom-mode is lagging. I panic. I cry. I try to reboot. Mom-mode is barely functioning.

Walking onto the ward was a shock to the system. Children walking around, dragging drip stands with far too many devices hung on them, tubes swinging around, machines bleeping. Children laid in bed, children with no hair. What was happening? This wasn’t my life. Game-mode had seriously failed. It needed turning off, then turning on again, that fixes everything, right?

An adult walks past me with a cardboard vomit bowl, full… seriously, put it in the bin, it’s disgusting. Our eyes meet, they smile, almost apologetically, I literally have nothing. I walk on, I feel her hand tighten around mine. She doesn’t like this version either. We have to walk the full length of the ward to get to our room. Why couldn’t our room have been the first door, not the last? I would have been spared those sights. She would have been spared those sights.

Things happen fast, more blood tests, passing out, orange juice, tears, a team of doctors, a diagnosis. Oh god, a diagnosis. Seriously, this game had majorly glitched. It’s not even getting a one-star review. Talks of theatre, talks of chemotherapy. Chemo what now?? No, no, NO!! This wasn’t my life. This wasn’t her life… She’s a child. My child. It just doesn’t happen to us. Here we go, chemo plans, social workers. What is going on? A chance encounter with a random adult in the corridor, a question… ‘What’s yours got?’ Again, I have nothing. They take the pause to mean that they should speak first, phew, I dodged that bizarre question. They told me what ‘theirs got’. Wilms. Never heard of it… they explained. I didn’t like this game at all. I wanted a refund.

I got used to this new life very quickly. ‘What’s yours got?’ became a standard greeting, and I learnt so much, so quickly, about different cancers and leukaemia, different chemos, different meds… I could’ve aced any exam on that stuff… But I never signed up for that course, I wanted to take cookery instead…

We didn’t have choices, we were told. Our life was controlled by others. They knew everything about her, how much she drank, how much she weed, how much she vomited. Poo was always a topic of interest, how much, what colour, what consistency? Really…could she not just go to the toilet by herself and flush it away? Turns out she couldn’t.

‘What’s your got?’ Another new member to this club that I found myself in. We all understood each other. We all know that look. You know, the smile that holds a thousand sorrows. The laugh that covers a thousand screams. That hug that covers infinite worries.

At that time, that ward and its inmates was my comfort blanket. My social worker, bless him, was my comfort blanket. PACT, just the awesome Beryl at first, later joined by the amazing Sarah, was my comfort blanket. Lynne, the housekeeper, was my comfort blanket. We aren’t in that ward now. We are living our glitched out, lagging lives at home. We just visit occasionally, to make sure she is still doing well. This is great, I hear you say. It is great. It is bloody brilliant. But my comfort blankets have gone… I don’t have my routine to concentrate on, I don’t have my comfort blankets. I don’t have the safety net of the doctors being there 24/7, I don’t have my comfort blanket. I don’t have to endure the cruel, torturous treatment regime that she had to suffer, but I still don’t have my comfort blankets.

Muggles think I am crazy… I am not wishing that chapter back, hell no, but I just miss my comfort blankets. No one asks me ‘What’s your got?’, and for that I am eternally grateful. I am eternally grateful for the Sheffield Children’s, they kept our family of 4 together. I am eternally grateful for everyone I have met along the way. People don’t understand, unless they’ve been there, that once you begin this new life, you don’t go back… Life will forever more glitch out… and there’s no chance of a reboot… But, no one, no leukaemia, no cancer, can ever steal my Positive Pants. These are my secret weapon… They ward off negativity.

The game keeps glitching, but I keep my Positive Pants close…

 

Author: A PACT parent.