We have received this beautiful and touching piece written in 2015 by Gillian Cassidy, Founder of 22q11 Northern Ireland and mother to Lucia.
Thank you for sharing Gillian.
WHILE YOU SLEEP, LUCIA…
How many hours in a hospital chair with you?
How many worrying thoughts?
How many painful tears will you cry?
The rain beats against the window
The many drops can’t compare to the moments of concern for you.
Watching your body tied to wires due to underlying missing genes
Ties me up with resolution to make your journey count
The years you had no voice, no words
Seemed to have created in me the need to initially be your voice then the voice of change.
The voice of advocacy.
The recounted medical history underlines just how many bodily systems are affected.
It brings to the forefront how much you deal with yet how normal you think it all is.
Your dada and siblings at home spending hours without us.
The updates to worried family and friends.
When did an ever ready hospital bag become the norm?
When did you become adapt at reassuring your 3 year old sister you would be home in a “minute of little time”?
When did your 2 year old brother start begging “I want you”?
Right now as you sleep in this hospital bed.
Right now the photos of you are your words
Right now people know about 22q because of you.
Right now is counting for something
Right now you are changing the world.
When I ask them if they know about 22q it’s not a idil question.
It’s me wanting to start a revolution, for you and all those like you.