Where does the time go!
It’s been a big 7 years, and this one, 2018, has been particularly noteworthy.
It seems like only yesterday he was digging into a jar of vegemite on the cream coloured carpet in our rental property, to chewing on tablets of blue loo. Nowadays, you’ll see him more discerning with his choice of savoury snacks, opting for an apple or 12. I usually find 3 a day – one in my bed, one down the couch and another under the table!
If you had told me that the days of chewing on blue loo tablets would one day be over, I would have sighed, and said ‘if only’. That regular phonecalls to the poisons help line – ‘my son has just put a dead cane toad in his mouth’ – would one day be a thing of the past, I would’ve given you an eyeball roll so steely, you wish you had eaten a jar of vegemite.
But yes, it’s true! All those funny little antics, with the above being on the more dangerous side, are what our memories are made of. Our little Danger, who is no longer so little, is near to finishing his first year of school of living with half a brain, since his life changing operation last year.
The choice of whether you want to operate on your child to have a hemispherectomy does not come easily to any parent who has faced this decision – or currently are facing this decision.
It is a mammoth feat of one’s emotions as you are hit with a barrage of all manner of questions:
- is it the right decision
- will it even work
- what if the seizures come back
- how will his siblings handle it
- will there be enough jars of vegemite to sustain him through his recovery?
All these are very valid questions and ones which we agonised over. The short answer, is yes, it did work. It got rid of his seizures from his damaged hemisphere, and although he has experienced seizures since the surgery, his quality of life has greatly improved, as he is no longer battling with an uncontrolled hemisphere. His ‘good’ hemisphere is now taking the leaps and bounds it so rightly deserves, to allow him to thrive, grow and develop, cognitively, physically and emotionally.
We have seen great leaps in his development and when your little seven year old who for so long has been described as non-verbal – says SH*T – in the RIGHT context, you can be sure there were high-fives all round!
I can only imagine what the next 12 months will bring, and we thank you for taking an interest in the life of our boy who lives with HHE Syndrome. As his family, we are so #SoBlessed to have him remind us what is truly important in life. Unfortunately, as life so often does, the white noise of everything else can often drown out the simple yet important moments, that are right in front of us. Like, how many chicken nuggets can you eat before you actually start to cluck like a chicken?
Apparently, it is a lot! It was his road to recovery, led by a trial of chicken nuggets. Onwards and upwards my friends (with some detours along the way), onwards and upwards!