Friday, December 2, 2016

Off the sidelines

I follow a lot of stories of children who have terminal illnesses, developmental disabilities, chromosomal abnormalities, rare genetic disorders, etc.  I try not to become too involved because living a similar life as some of the families can make it challenging for me to separate our life from theirs.  It can be suffocating to see a child dying from a similar disorder as Sonze, and it can be equally challenging to see a child who has been affected far less than her.  So for my sanity, I try to at a minimum show support and pop in because I do genuinely care about each child, but I don't get too involved.

A common theme among all of us special needs parents is the overall feeling of helplessness.  There is nothing I have experienced in my lifetime as unbearable as watching your child suffer but not being able to do anything about it.  You literally have to sit by and watch.  I remember when my first child began to walk and she ran into walls, when she went to the park and I was afraid she would fall.  The feeling is the same,  you know you have to let them learn on their own, but your first instinct is just in and "save" them.  It's similar but much worse when you are watching your child suffer from pain, when you watch your child have seizures, when you watch them deteriorate before your eyes, and I don't want to imagine, but can only assume as you watch your child slowly slip away, and not be able to do anything to stop any of the above.



One of my main purposes of Sonya's Story is to raise awareness.  I hope that all of you understand the reasons behind when I or another parent of a "rare" or sick child asks for donations, asks for you to buy/wear apparel, or bombards you to with pictures or stories explaining their child's condition and overall progress.  For me, it is a way to feel like I am doing my part to not just stand by and watch.  I hope you can put yourselves in my/our position and TRULY KNOW that YOU would be doing the exact same thing.  During this holiday season you might begin to see more campaigns to help support rare disorders or to help a child in need.  You might be asked to support more causes financially or to share posts and information.  This is one way of how we as parents cope with the helplessness.  It is the way we hope to bring awareness and maybe it will bring us a cure.  It is the way we feel like we might actually be doing more than just sitting on the sidelines.  

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