On Reflection

It’s been a busy few months and a while since I’ve written a post, so thank you to all my friends and family for asking where the next one is as this has spurred me on to keep writing even when life gets a bit hectic!

Reflecting on 2017, it was a year of change and growth for everyone in our household. My first born started primary school, I officially quit work and became a full time mum and my little Aiya took lots of amazing steps in her progression.  We experienced her reaching landmarks that we never expected her to achieve – sitting up, babbling, emotionally and socially engaging with both us and unfamiliar faces.

Last year we worked through understanding what MOPD Type 1 meant for Aiya and dealing with her allergies and skin irritations. A year on and although the allergies are still present, we have them under control and along with the skin condition they are both better understood and managed. Although a future with MOPD is still a relatively unknown entity for us and Aiya, I do feel that we have a clearer view of what it may mean for her. With help from friends we’ve made from the Walking With Giants family (http://www.walkingwithgiants.org), we are able to see how the handful of children with MOPD 1 that are older than Aiya are progressing and what their challenges are as they grow up, so we are on the front foot rather than being in the dark all the time. For these people I am truly grateful, as it is hugely beneficial to approach things from an informed position and makes the future a little less scary.

As I reflect on how far we have come in the last year, it’s hard not to wonder what the next 12 months will hold for us as a family. I try my best not to think too far ahead in the future and live everyday as it comes, as this stops me getting caught in the world of ‘what if?’. The world of ‘what if?’ can be a positive thing in some scenarios as having dreams and aspirations inspires people to be the best they can be. The world of ‘what if?’ for us can mean what if the worst happens, will she walk, will she talk? The latter two are my dreams and aspirations for my little girl and they may or may not happen, as there are still lots of uncertainties for Aiya. That said, it doesn’t mean we won’t spend every day supporting her to make baby steps, in whatever directions Aiya wants to take, rather than imposing on her what I or others think she should be doing. Aiya is her own person now and she is my guide in what the road ahead looks like for her. Keep pushing baby!