Journey to Joy
An incomplete and introductory personal expression from a mother of a beautiful loved child with a extremely rare genetic syndrome (Coffin-Siris Syndrome) and a number of other complex medical conditions such as Autism Spectrum Disorder, Global Developmental Delay, Laryngomalacia & others...
A place to express moments from our world
Our story in pieces…
when your worth is measured in silence
when you allow your most vulnerable emotions to lay bare, when you always give love and support unconditionally, then when you need some care of your own, some one to ask and reassure you and just check in on you, at your lowest. there is silence. what does that mean? when your worth isnt even…
take away all the things, then tell me
if you took away social events, regular sleep, sleeping past dawn, your silence, your me time, your cleaning time, your work time, your life admin time, holidays, weekends away, dinners at restaurants, brunches, walks, swims at the beach, a tidy house for longer 25 mins, unbroken walls, unbroken phones, eating together, seeing friends in normal places,…
stuck in the middle
its the week between xmas and a new year, we cant really go anywhere and we cant really keep the house clean or do many chores at home as our son cant stop moving around, unpacking, messing, screaming, repeating things over and over. it is a daily routine and joint effort of the entire family…
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A Journey to Joy 