We are about to experience a different kind of Christmas this year – our first Christmas without seizures!
It’s been about 5 years since when looming up to Christmas I haven’t been full of anxiety with the anticipation on whether our little Danger would be having a hospital trip, recovering from a cluster of seizures or just be too worn out from his seizures, the side-affects from the meds and the combined pure exhaustion of it all!
I am very good at masking my anxieties, I think you have to in a sort of self-preservation mode. You have to put on a different face, when you go to work or meet friends for a drink – you have to just push that aside for a moment to be able to function at a different level, I know my life awaits when I return home! The mask comes off when I can get home and fully relax. A quiet cry or a quiet wine, to take the edge off whatever I have had to deal with that day. Pushing down my own insecurities in the process.
For the first time in a long time, I have been able to really slow down and just enjoy the build up to Christmas, the excitement in his eyes for every time we are out we bump into the big man in red!
When Danger squeals ‘Ho Ho’ (his word for Santa!) it fills my heart with joy that he is truly understanding the connection of Santa, and that he is here to bring joy to children and of course, presents! I didn’t think it would be possible, that so soon after surgery, we would be and out and about meeting different Santas and just enjoying the moment. His cognitive connection has really amazed me these past few months and the fact his brain isn’t struggling with an obscene about of drugs in his system, as well as an abnormal hemisphere – is a sight for sore eyes!
We have kept it pretty structured this year, with returning to the Christmas Parties that we attended to last year (prior to his surgery). The difference in attending pre and post-surgery has been pretty eye opening to say the least.
We were very fortunate to be invited to the Westfield Special Kids Christmas Breakfast both in 2016 and 2017, and as it was a local shopping centre and play area, Mikey was very familiar with the space and so were we! It was well gated and all the volunteers remembered us from last year. Some even had a tear in their eye when I explained to them that Mikey was now ‘post-surgery’. They were amazed at the little boy that they could see before them. Mikey tried to escape a couple of times, but we were onto it, as were the volunteers!
The second big Christmas party was the big Variety Christmas Party at the Brisbane Exhibition Centre. It is a huge party with loads of families who attend from in and around Brisbane, the Gold Coast and Sunshine Coast. It is so well thought out and everything is available. Rides for the kids, Santa photos, animal farms, face painting, the police and their motorbikes and cars, food, drinks, presents and entertainment – you name it, it’s there! And of course Danger’s favourite – Bat Man! He squealed again when he saw Bat Man – and ran straight over for a hug. Bat Man was beaming and it was just such a lovely interaction. All the volunteers there do an amazing job with the number of families that go through their doors. Mikey was pretty good with the noise this year, and even though he is more sensitive to noise after his surgery (a side-effect of surgery) he managed it very well.
The days following these big events have also amazed me at how he has re-adjusted. Prior to surgery, the tiredness following these big days, would see Mikey very hard to self-regulate and ‘just be’. He would cry for hours and just need constant cat-naps to recover. This year, we were able to go home, and he was able to self-regulate by playing on his iPad or going under the sprinkler to cool down.
It has been a true miracle to watch the transformation of Mikey as he is being weaned off his meds and coming into his own true personality without having to constantly battle seizures with an abnormal hemisphere – really, in hindsight, that hemisphere didn’t do anything since it was damaged at 10 months, and the left hemisphere started rewiring to bring across the ‘remaining goods’ from the damaged side.
We still feel incredibly lucky that Danger’s surgery has been the saving grace for him and his epilepsy. And even though his HHE Syndrome is a part of him, it does not own him nor does it define him. But it has made him who he is, because of the strength he has endured to fight this insidious form of epilepsy and the agonising decision we made as his parents to proceed with this type of surgery.
To simply say, ‘you made the right choice’, feels like a platitude. It wasn’t really a choice as such, but an opportunity to rid him of his seizures that were hampering any real further development. It was a slow and carefully measured decision by the top paediatric neurologists in Australia – both in Melbourne and Brisbane. Those guys don’t just flip a coin!
Danger can now experience the world in his own way with the freedom of no seizures interrupting the new connections his brain his making and developing. That for me, is the best Christmas gift of all!