I have several things I could post about: our trip to Buffalo for our son’s wedding, Lumenocity photos and video. I have a lot of photographs I could share from my 365 project and scenes from Buffalo. And I’ve been debating back and forth for a while now whether or not to share what has really been on my mind first thing in the mornings the past two days. I think I will.
On April 10th I received a message on my Facebook author page from someone named Karen. She wrote, “I just finished reading your book last night and I cried and cried….All through the book I kept thinking, ‘I wish I could talk to her”. I have a few things in common with you. I have a daughter who is 14 and has severe Cerebral Palsy.'”
It touched my heart that she reached out to me. Meeting people like Karen has been the greatest reward of publishing Dancing in Heaven. We corresponded a few times. I explored her Facebook page where she often posted updates about and photos of her daughter Jessica.
On Sunday night or Monday, I read a post from Karen that came across my news feed. She wrote, “I don’t know how to go on without her. She was my life. Please, Jessica, help me.” I feared the worst and my fears were confirmed when I read through Karen’s news feed and saw message after message of condolence.
Jessie died Sunday morning. I read her obituary that Karen had posted.
I struggle with the message I’m trying to give you. But it’s something along the lines of what I believe to be a vast difference when a special needs child dies. There is a bond there that has been strengthened and tested in fire. There are so many aspects to it that most people never have to think about. And sadly, I am not finding the words to adequately explain.
I always feared that others would only see Annie’s disabilities and not her value. That’s why I wrote Dancing in Heaven. I always wondered if others would focus on the care giving my parents gave Annie, and perhaps even think in some corner of their mind, ill-illuminated or not, that perhaps there was a sense of relief that the care giving was no longer required.
I don’t believe you will find this to be true for any parent who loves their special child.
My heart goes out to Karen and her family. And the primal anguish in her words reminds me of what my parents must have felt when Annie died, four years ago now, on Friday.
Dance in heaven, precious ones.