Month: December 2020
Last appointment of 2020
So, we went to our last in-person appointment of the year. Same mother, same car, same hospital, same room. Different child, different doctor. She was great. She kept her mask on all the time and was fab. She asks a lot of good questions. It was nice being one to one with her. It wasn’t nice going to the hospital, that still hurts.
We also bumped into Daya’s consultant which was nice. We then went to the GOSH church and wrote a note for Suvee and her family. I left it on the the same tree where we wrote one together almost a year ago.
These two stayed at home and watched movies and played with each other.
Today I have had four medical calls and appointments are already lined up in the first week of January and that’s how 2021 will begin…along with a funeral.
Let it Peak and Let it Pass
Some of my friends are having a tough time recently. This year hasn’t been easy on the general public. This ones for you.
What you think is what you will feel. Feelings circulate back into those thoughts. Loosely speaking, in its most simplistic form, that’s probably how it goes. What you think is what you feel until you decide to think about something else.
Changing your thoughts will hopefully change your feelings. This is easier said than done. It’s an art form that can take years to perfect. Emotional intelligence is something I work on with my girls, in an age appropriate manner, in order to help them to understand and eventually regulate their emotions. Some things will make life worse such as bullying or the illness or death of a sibling. I’ve got lucky with my girls. Anaya has grown into her maturity-inducing situations very well.
I was overwhelmed yesterday. I was crying. I was missing a child, thinking of her family, keeping those feelings at bay, I was watching Daya and I’m afraid of losing her, I don’t want the girls to live without her, I’m always trying to be present for my girls, Jasmine vomited, lack of sleep for days, tending to all the needs of my children, I missed a call, not wanting to go back to the hospital, hearing of a relapse after seven years, wishing my friend wasn’t in hospital right now, taking Jasmine to an appointment and worrying about her getting cancer too and most importantly worrying about her deteriorating – all reasonable thoughts given the facts. I found a lump in Daya’s throat. I don’t even want to panic and rush her anywhere. Please just be a swollen lymph node from a cold. ‘I’ll keep an eye on it’. Jasmine and I went to an appointment. Jasmine could deteriorate. Me: can she deteriorate? Him: ‘I have had children come in here in a wheelchair’. Well that gives me no certainty. ‘How will we know and (asking casually) what about cancers associated with this?’ ‘Let’s cross that bridge when and if it comes.’
What I was thinking: so we are none the wiser, as expected and…that’s ok for you mate, it won’t be your life that gets fuckt and you won’t be picking up the pieces. Some forewarning would be great. That’s not an answer. You won’t be around to cross that bridge with me.
What I said: ok.
This wouldn’t be fair; not after she’s worked so hard to stand up. I watched her drag her legs behind her on the wooden floors. I’ve watched her take her first steps. We’ve got more problems now.
I’m trapped in this. I have to be here. No holiday. No respite. I’m here fire fighting or spinning plates or sometimes it feels like both. At some point I’ll also tell you about my experiences in the school application process! That had me crying too.
If you’re feeling shitty because you don’t get to see your families this Christmas, take heart in the fact that many of them are still alive. We have spent six Christmas holidays in hospital and apart. I won’t preach on this. Everyone’s circumstances are different. We all want to get out, meet people and go on holiday. That time will come…every worth has a wait.
What I do know is this, bad days exist. You need to try not to feel too much. Sometimes we laugh and sometimes we cry and sometimes we fight and sometimes we cuddle; but you need to make sure you are surrounded by the right people.
As soon as we got out of isolation, and she thankfully got into remission, we were back in due to covid. But it was better this time as we were home and together. I’ve been living largely in isolation for over four years. I wasn’t expecting to be dancing ‘in the club’ or hitting up Tinder for a new husband (or can you imagine Anu on Tinder looking for his next wife/date! I’d probably have to do the swiping and vetting! We all know his next wife will be spending New Year’s Eve in her tiny red metallic bikini on Copacabana beach having spent all year perfecting her booty-glutes-squat skills. So sad, she’s ‘worked’ all year; drinking her juices, living in a calorie deficit, hungry!,sqautting and planning…and she won’t get to see well behaved litte Anu). Oh Sulema, Sulema, Sulema…I shake my head with embarrassment and pent up laughter on your behalf.
Anu exclaims loudly: I can’t pop over and say Feliz Navidad!!!
Me, shocked: do they have Reals or Dineros there? I can remember ….what’s ….what’s that smell?
Anu: where? Ohh….there!
Me, proceeds to sniff, sniff, sniff Anu: ‘what’s that smell?……(Anu looking confused)…..Money!!! That’s what Sulema’s thinking when she sees her Sugar Papi! Little does she know….Feliz Navidad to you both!
Anu proceeds to laugh loudly.
This year, I’ve lost count of the number of times I’ve said to others; ‘you’ve got the wrong people around you’.
Good days/bad days; at least we have these days. Don’t think too much on the days you are tired. Shit days will happen and good days will draw to a close too; whatever and whenever you feel too much on the bad days or moments, feel it. Allow it in. It’s much harder to fight it or ignore it. If it gets in, let it peak and let it pass. All things, good or bad, pass.
She’s gone
Will it be fair?
In the end, will it be fair? Because that is all I want.
But when so many have died so easily, why would or should it be fair? Life, as they often say, isn’t fair.
I get to live with fear instead of grief but that’s not fair or good either. It’s just one step above grief. It’s not ok. It’s not a choice. It’s just circumstance. I still can’t relax or take my eye off the ball as motherhood/fatherhood lasts forever. When you add disability or cancer, you’re never going to feel safe again.
I found a lump in her throat recently. On the side, not a tonsil but maybe a lymph node. I found it the night before I woke up to a call. A call where I found out that her 7 year old friend had died.
Yes, she’s gone. Thursday 17th. Her mother called me not long after. It was in the morning. She was in her mothers arms. She couldn’t breath. The cancer had taken over her body. She climbed into her mothers lap and looked up at her. Struggling to breath. Soon after, her heart stopped. She’s gone….and that is how a heart breaks.
I didn’t ask anything. I never do. I just stayed quiet and all I can say is ‘I’m sorry’.
The thing with children dying from neuroblastoma is that sometimes they are too young to understand or be told. They want to live. Their minds are attuned to exploring and playing. They want to live. They are waiting for it to be over so that they can get better. The pain is enormous. The tumour grows inside. It spreads. Those new tumours grow. It can grow through the skin. Bones hurt. It presses on organs and takes up space; there is no space in the stomach to take in any food. I’ve been told it cracks the bones. But they learn to tolerate pain. This is the sort of pain that medications often cannot target well enough. But they want to live. They want to play and dance and run. That is all they want. They want to get better. All the while they remain trapped in a body that is failing them; all the while they dream of playing and having fun.
She’s gone …. and it hurts.
National Deaf Children’s Society
You may never have heard of them before but now you have. Our story with Jasmine has been featured as the cover story for the NDCS’s Winter 2020 Fundraising magazine for supporters.
We decided to share our brief story in the NDCS supporters magazine in order to help raise funds for newly diagnosed families and children who are ‘coming up behind us’. And here we are….
If you would like to donate, here is the link: https://donate.ndcs.org.uk/page/50931/data/1
My Three Little Bears 