I usually keep my reflections and resolutions private, but 2023 feels like it’s going to be a year of growth and breakthroughs.
Not many of you know, but in the last quarter of 2021, Little Chicky was diagnosed with a rare genetic disorder, Dup15q. It’s a neurodevelopmental disorder caused by a partial duplication of chromosome 15. This in turn causes conditions like global developmental delay, autism, intellectual disability, low muscle tone, epilepsy, poor fine and gross motor skills and the list goes on.
We’ve deliberately kept his condition off social media for several reasons. The first - we didn’t want Little Chicky’s entire identity to be reduced to him being just a ‘kid with special needs’. He is so much more than his diagnosis. Second - it took us quite a while to come to terms with his condition.
@bryan6789 and I have needed time to embrace our unique, new normal. This has meant accepting that some of the dreams we had for our little family can still exist (raising a child filled with love and compassion for others), some we’ll need to adapt (zipping down ski slopes and diving as a family) and some we’ll simply need to let go of.
@bryan6789 and I have both cried with heartbreak, mourned the life we thought we would have, marvelled at the blessings showered on us and laughed when things just got too overwhelmingly ridiculous.
On the days the going gets tough, we ask ourselves - given a choice, would we want to swap Little Chicky for another high-functioning, neurotypical, ‘perfect’ (in the eyes of society) child? And the answer, no matter how rough a day it’s been, is always…. no.
To our precious Little Chicky, with all your funny quirks and huge (at times overly aggressive) hugs - you’ve gone through so much more than most kids your age. May we always treasure every moment we get to spend with you and continue to learn from your resilience, strength, childlike wonder and pure unadulterated joy. We’re so blessed to be stepping into 2023 with you. ❤️
