It has been a year of epiphanies. A 2 year old boy is never easy to handle – a 2 year old boy who has had a childhood filled with trauma, pain and horror-in-the-name-of-treatment are way more impossible to handle!
Imagine a hyper-active kid who wakes up every two hours due to night terrors (and then is groggy and half-attentive throughout the day), a toddler who runs for his life when anyone wearing blue (the colour of hospital uniforms) steps into his path, a boy whose earliest sentence is “I hate eye drops” and a massive hypochondriac all rolled into one! That is how my son has turned out.
There is inherent insecurity in all kids going through severe early pain (let’s say, with chemotherapy) and it has become all the more pronounced in Suri now that his stable partner (me!) has abandoned him (according to him!) to go back to full-time work. It was a difficult decision for me to make – but I felt spending every day of his first 2 years and 3 months with him sort of compensated for the vividly cruel gesture.
In fact, going to work had an unexpected blessing in retinoblastoma disguise. I work alongside an Rb father whose kid A literally went through everything Suri went through, right down to the stage of diagnosis and the recurrence. It was awesome to meet the lovely girl as well – she has so much spunk and maturity that I am beginning to wonder if Rb is actually responsible for creating some strong, well-balanced kiddos out there!
The difference here is that the father has a history of osteosarcoma – as we know, heritable retinoblastoma is widely linked to osteosarcoma and vice versa.
Suri has already been warned about the risks of osteosarcoma developing at an earlier age (and with a higher possibility) than non-Rb kids. This parental link was very interesting to note as well – I wonder if the gene was actually passed on. (I know you read the blog – so something for you to check up and comment on?)
It is indeed a small, small world. And it underlines the fact that we need to spread Rb awareness even in small communities like the tiny company I work for. It could make a difference to who-knows-who!