Lily’s Adjustment to CDKL5 Loss
Lily has been adjusting to Harper’s absence surprisingly well.
Lily made a video for the research Lab taking care of Harper’s living, growing cells!
Won’t you consider contributing through Memorial Run participation? (virtual runner option for those unable to attend)
Posted by Love Day on Tuesday, April 26, 2016
We recently attended a Celebration of Life for Dustin’s uncle in Louisiana at which I observed Lily’s emotional maturity. Lily has endured two major life-changing losses in the past two years with such grace. Or, could it be lack of mental understanding of what loss is? I decided to have a conversation with Lily about her view of death to see which it was.
I asked Lily if she missed Harper.
Her casual response over setting the table was, “Of course I do!”
I asked Lily if she was sad at the funeral in Louisiana.
She said, “Yes! Why wouldn’t I be?”
I tell her that she does not seem sad.
She said, “The first fun Friday without Harper was really hard for me, but this is our normal now.”
I asked, “How do you seem to be doing okay with Harper gone? What is the concept of death to you? How can you be sad but be happy? Are you genuinely happy? Do you understand that you will never see Harper again as the sister you remember her to be? Don’t you miss what normal was?
“Mommy, my view,” she says to me, “is simple. It’s not how we want life to be but it’s just how it is! And we need to move to a new normal. Yes, I’m sad but also I am happy because if Harper were still here there is much we would not be able to do that we are doing. And I think doing those things has been good! Not just for us but for other people too. And I WILL see Harper again someday, so will you. Maybe not as baby Harper but her spirit! And Mommy you shouldn’t worry because you are almost 40 so you have a lot less time to wait! “
CONVERSATION DONE…I do believe she called me OLD!
Wise Words of Wisdom from 8 year old Lily K Howard
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