Chronic sorrow in parenting a child with a disability

Chronic sorrow is a state of being which is underlined, not always on the surface but can be triggered by some events or circumstances. It has a reoccurring nature. It changes over time but does not end.
Chronic sorrow for special needs parents comes and goes - often with high peaks when a child enters new life stages. Grief associated with a child’s disability is both pain and sadness about what the child will need to deal with, not be able to do, may face in the future, and also what their child has missed out on, or has suffered in the past.
Chronic sorrow is something we might carry within us for many years and it co-exists with the endless love we have for our special children. Perhaps the sorrow is present because there is so much love.
Walking through the pain of sadness every time is triggered by something makes special needs parents resilient. We need to remember that there are always two sides to the medal: challenges and the joy that your child brings.
From Rett Syndrom Research Trust
Rett Syndrome is a genetic neurodevelopmental disorder that predominately affects girls. Its symptoms strike typically between 12 to 18 months of age. The disorder is caused by random mutations in the MECP2 gene on the X chromosome. Rett Syndrome is devastating, as it deprives young children of speech, hand use, and normal movement, leaving many individuals without the ability to walk or communicate.
Rett syndrome was first identified by Andreas Rett who stated that:
“They feel all the love given to them. They have a great sensitivity for love. I am sure of this. There are many mysteries and one of them is the girls’* eyes. I tell all the parents to look at their eyes. The eyes are talking to them. I am sure the girls* understand everything but they can do nothing with the information.”
*at this time, only girls were thought to have Rett syndrome
If you would like to know more about Rett Syndrome and what support you can get or give please visit www.rettuk.org/ and reverserett.org/
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#motherofaspecialchild #parentofadisabledchild #chronicsorrow

[@muhammadmudassar6439]

Thanks for sharing your experience and reflections. Very insightful.

[@agiftofaspecialchild1903]

i'm glad that you found my video helpful. thank you for watching.

[@SummaGirl1347]

Please don't call us "Special Needs". People who use euphemisms are still in denial; and denial will not help your child. Actual disabled people (like me) call themselves "disabled" and are not ashamed of their disabilities. By using euphemisms, you communicate that you are ashamed of, and can't accept, your child's condition.