my two front teeth.. . a clear EEG for Mr Danger!
It’s been a massive year, and thankyou for all those that continue to read our Blog and join us on this
journey rollercoaster ride!
I think it’s safe to say that 2017 has been our biggest year yet!
Mr Danger and his twin Jaz E began their first year of schooling in Oz – Prep, and Kat finished up her second last year in Primary School. The twins had very different experiences through prep this year – some negative but mostly positive. Mikey absolutely thrived at school and pretty much every day of school was a joy for him, in so far as him accessing what he needed to learn with some beautiful teachers (the seizures at school weren’t great!). Jaz had a rough start to her schooling life, but we hope that will turn around as we get to the bottom of what she needs in the way of therapy and helping those understand her, for her best to thrive.
In any case, Prep was a massive learning curve for all of us!
Mr Danger had his much anticipated and long awaited hemispherectomy surgery in July this year. His 2 hemispheres were disconnected with the abnormal hemisphere, still in his head(!) This type of hemispherectomy surgery is called a ‘functional hemispherectomy’. His follow-ups with the surgeon and neurologist were quite astonishing. It is a very surreal moment when you put your absolute faith and trust into the doctors that are dedicated to their work of helping children with catastrophic epilepsies. We cannot thank them enough and I think the smiles on their faces in Mikey’s post-op follow-ups was enough for us to know how happy they were to see that they had truly given a little boy his life back!
We are still on cloud 9 about that one, and will be for some time!
The other big event this year, was making it through my dad’s one year anniversary of his passing. God know’s how my mum, brother and myself did it. I guess for me, I focused on the kids and took it one day at a time. It is still very hard as time goes on, time sure isn’t a healer in this case. Danger asks about his Poppy daily and we talk about him all the time. Mikey’s expressive language has come on in leaps and bounds since surgery, and the love for his beloved Poppy, is expressed aptly.
As a family, we have experienced extreme highs and lows this year, but I think we are coming to an even space now, where things are being fine-tuned to balance out the
bullshit other stuff!
I am hoping that 2018 brings our family more peace with living a life seizure free and being able to enjoy all that it entails! It is always bitter-sweet however, because when you are catapulted into this life (my favourite term for special needs parenting!) your circle starts to change and evolve as you meet others in similar territory. Unfortunately, not all of us have happy second-chances and we are reminded daily how very fortunate and ‘lucky’ we are.
I read this quote the other day, which summed it up beautifully between the meaning of sympathy and empathy. I do believe that is why many special needs parents feel differently towards their children and because of the uncommon life we are living, we feel differently about things. We know all to well, how quickly healthy babies/kids lives can change in a second. It has happened to us.
It is just the way it is, it is something that is learnt. No matter how hard you try, you cannot imagine what life would be like with a child with a disability, until you are living it. It is a different life and that is ok. Because I have finally understood that to be Mikey’s mum is a privledge and something I never take for granted. It is not to say we don’t have bad days, we all do – we are all human, but there is an understanding in our family, that Mikey needs extra help and will need it for the rest of his life.
Apart from when it comes to motorbikes as he’s got that!
We wish you all a great Christmas with your families – with much love and peace 🙂