How the west was won

Today this title has simply plagued me, listening as I worked away to ABC conversation with Dr Tony Attwood, that way he spoke about needing to sell a diagnosis to some people this struck a chord. The explanation of our decisions our  current practices and essentially our daily life.

Lilliana was diagnosed officially on the 5^th of March as yet I have not had an actual conversation with the majority of my family, their support and acknowledgments over the past years has underwhelmed me. In the past years again the distance has grown, and the gap is vast. This gap is something that I think and reflect on frequently but more so of late as my youngest questions “where is my nanna?” “what is a Nanna?” my baby wants some answers, the older children are easily refocused on this, but Eli is not to be led down another path.

His questions have become a part of a new fixation, and yet at the same time they have fuelled mine and my head screams well where is your Nanna or the equivalent.

So far the few conversations around this diagnosis have been measured conversations, all but one that moment I will remember as the crack, lucky for me it was in a room filled with parents of children with additional needs, parents that knew all too well that pain, the loss and the fear associated with diagnosis. That parents in that room will all have walked out with different moments they held from it, from that moment I took love and support pure and simple and understanding that I was not alone in this, I remember the tears in people’s eyes and the looks. It was a moment I was free to be me and let people in.

Lilliana’s diagnosis was so rapidly followed up with a provisional diagnosis for our youngest, some of that time is simply a blur of emotions.

Our west is not yet won, there are conversations still to be had, there is the difficulty of “selling” this to people that see these children for such limited amounts of time. I also wonder if the West will ever be won, how many times do these conversations need to be had, at present we have just begun the conversation of diagnosis with the dept of Education, this is one conversations that makes me shudder. This conversation and subsequent paperwork is the beginning of Lilliana’s schooling and will set her up for the future of her schooling life. This thought can paralyse me at times, the idea that the decisions we make now based on our current finances, our working hours, our address all have the power to make this decision a very good or a very bad decision. These discussions and subsequent paperwork hold so much power for  Lilliana.

It just feels like there is always some form of battle going on, the battle for acceptance, support and above all else the battle for my children to have lives that are enriching.