This week has seen T have his first major emotional reaction to his medical conditions. As a family, we have had many emotional responses to the ever unfolding events, however, this has been the first time it seems to have significantly hit T. And hit him it did. Like a HGV.
We were getting ready for school on Thursday morning and T was nattering away as I was trying to dry my hair whilst also putting on clothes whilst also brushing my teeth. He came into the bedroom and sat on the bed and started talking about a football tournament which is coming up at his school.
“They asked who was interested and so I put up my hand, but I didn’t get given a slip. Why didn’t I get a slip too?”
I knew a question like this would pop up at some point, however, I naively thought it would pop up at a time when various emotional buffers could be put in place, we would have hours to talk it through, and I would be fully clothed. Not a random Thursday morning just before school when I was stood in my pants.
The reason why T didn’t get a slip, is because of his Cardiomyopathy. His cardiologist is happy for him to participate in PE lessons (as long as he’s careful), but competing in any kind of sport is a firm ‘NO’ due to the amount of extra stress it could put on his heart. Trying to explain this to a 9 year old who wants to be professional footballer and/or wrestler though is easier said than done.
I explained to T, as gently as I could, that he wouldn’t be able to take part as it could make his heart poorly. I think this news actually made his heart poorly, never mind the sodding tournament. He broke. Our beautiful boy broke into a million pieces. I think up until this point, he has viewed his FA and Cardiomyopathy as inconveniences to his life, rather than dictating factors. They are the reason he shakes, or gets tired. The reason why we need extra railings and a wheelchair. This is the first time they have actually put a concrete blockade into the road and said “No, you can’t do this”. Now, this isn’t about limiting his ambitions or killing his dreams, this is about keeping him safe. There is no wiggle room on this. His safety is the most important factor here. As difficult as it may be, we cannot put him into a position that could damage him beyond repair.
“But I feel fine!”
“I’ll be careful Mum, I promise I won’t get ill.”
“It’s not fair.”
You are so right T, it absolutely is not fair. Its not fair at all. On our journey so far, that Thursday morning has, hands down, been one of the most difficult bumps in the road so far. What really shook me, is that our unflappable boy didn’t bounce back this time. There was no shaking it off and smiling. He was just sad. He didn’t want to go to school, he didn’t want to talk, he was just sad. He cried. I cried. We cried together and cuddled one another and we stayed that way for a long time.
When he was calmer, I managed to talk him into going to school. T has always responded well to distractions and I felt a bit of normality was just what he needed. When we arrived at school (very late) the Teaching Assistant from his class came out to see us. He was still extremely upset. We sat together in the playground talking (and crying) through the situation.
It has to be said, that T’s school are absolutely incredible. We could not wish for him to be anywhere better. On that Thursday morning when we were a little bit broken, they stepped up again. His lovely TA informed me that she was a trained ELSA worker. This stands for Emotional Literacy Support Assistant. Basically, it means the school has a dedicated member of staff to provide emotional support to young people. She offered to do some work with T that day, and going forward, to provide him some further support. In my opinion, every school should have an ELSA worker. I felt confident knowing that in my absence, he would be receiving some expert support. T seemed happy about this too, although he didn’t fully understand what it meant. Later on in the morning, I received a message from his lovely Teaching Assistant to say that he was a bit withdrawn but was perking up as the time went on. She also said that she had already spoken with the Headteacher and would be offering immediate support to T in a regular weekly slot. I actually adore Dunswell Academy.
When I got to school to pick T up at the end of the day, he was smiling and happy. I went into the classroom and he showed me the work he had done in his support session, and that he was going to lead his own club! Lovely TA explained that to build his self esteem, she had suggested that he run a weekly club that would be supported by a member of staff. So, in true T style, he wants to run a Wrestling Club.
“I only need an airbag, and then no-one will get hurt.”
I don’t think she wanted to kill his vibe, but she did look slightly concerned about the prospect of children being body slammed into an airbag. I assured her I would help him come up with an alternative idea that would be less likely to result in the injury/death of a child and a P45 for the staff member…
And so off we went! Although not 100% his happy self, T was so much brighter and positive and he also assured me that going to school had been an awesome choice as he liked playing with his friends. He was smiling, I was smiling. And then we got home. And the bastard fish had died.
Now, our fish Costa (named after Diego Costa, natch) has always been a bit of a phenomenon. I think he’s the first fish I have ever encountered who has Body Dysmorphia. We look at him and see a slightly larger than normal goldfish, he stares at his fishy reflection and sees a malnourished version of himself who is eternally deprived of food. Now, before anyone calls the RSPCA, this fish has never been deprived of food. When a person enters the kitchen, Costa the Fish begins his performance of “Feed Me, I Am Starved”, a one fish show centred around guilt tripping his captivated audience. Basically, he (artistically) head-butts the feeding area of his tank until someone gives him food. Now, it is quite distressing to see a fish behave in such a manner and so, more often than not, his little fishy tantrum would have the desired effect. It actually got to the point where we had to ensure full communication between the entire family about said fish, or he would end up being fed 4 times a day! Luckily we got wise to his plotting.
The past few weeks he’s been a bit of out sorts. Sleeping a lot more under his rainbow, and less interested in food (which was the biggest concern given past history). But, for a fish, he’s quite old, so J and I were kind of half expecting the inevitable. T however, was not.
We had more tears, lots of cuddles again and he said a prayer over the tank. He went to bed very sad, but clutching to the hope of a quote I have turned to more times than I would have liked to in recent months:
No matter how dark the night, the sun always comes up in the morning.
All in all, Thursday was not a good day. I actually think the day may have been cursed as a very dear friend of mine also had a rather traumatic Thursday. And so, I have hence forth named Thursday 27th September 2018 as Black Thursday.
I know there will be more dark days to come, but for now we are focusing on the sun; and our little T seems to be finding his smile again.
RIP Costa; and piss off Black Thursday.