In general I try not to take things personally, however when it
comes to Sonzee and spreading awareness of her story, CDKL5, and epilepsy in
general it tends to be a different story. I am much more sensitive when
people make comments without thinking, it's not that I want to crawl up into a
ball and cry, but sometimes the words cut a little deeper than I would like.
I also try to not take offense to people not sharing or liking Facebook
posts. I can appreciate that Facebook and social media in general can
become overwhelming and people do not like their news feeds being inundated
with random children's "sad life stories". However, I cannot
lie and say it does not make me super peeved and annoyed when I see people have
hidden or unliked a "Sonya's Story" post.
I know everyone has their soapbox, their personal agenda, and
personal struggles, but what I want to ask is what happens when it is THEIR
child, THEIR best friend’s child, or THEIR family member who becomes a victim
to epilepsy or a rare genetic disorder? How would YOU feel when an
important purpose that YOU stand for, that YOU want others to care about is
ignored? Sonya's Story and ALL of the Facebook teams that represent a
fight for a cure, an illness, and/or a cause, they are about REAL PEOPLE!
They are children, they are siblings, they are moms and dads, and they
are people worth more than just hitting "ignore post".
As Sonzee gets older, she will not be as cute as she is or was
when she was a brand new baby who people oogled and ogled over. As time
goes by people won't look at her and feel as driven to help find a cure or
support the cause, but right now I really don't understand how people can hide
her cute pictures (okay, maybe I am biased?) and not want to help find a
cure or spread awareness for CDKL5. I wish Facebook told me who was
hiding posts and unliking her Facebook page so I could defriend them.
Maybe I am being a little too sensitive about the issue, but can I tell
you how many of my Facebook friends Jamberry, Mary Kay, Luloroe, Arbonne, Rodan
& Fields, Scentsy (I can go on) groups I belong to? What does it hurt
to follow a page? I don't ask for people to like a post, nor does anyone
have to share it, but I wish people would follow her story because they won’t
ever know when it might help someone they know and love in the future.

No comments:
Post a Comment