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.
Christine M. Grote 
You conveyed the message beautifully with this:” …… 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.”
One of my good friends lost a child to Muscular Dystrophy. During the eulogy, he read an excerpt from the beautiful essay Welcome to Holland (http://www.our-kids.org/Archives/Holland.html) which evokes much of what you’ve conveyed. My heart goes out to your reader during this sad time.
I absolutely love the essay. It gave me goosebumps. Thank you.
Christine, this was a beautiful and powerful post thank you. As you write ‘another angel has gone to heaven’. I will still read Karen’s obituary. And my heart goes out to you this Friday on the anniversary of Annie .. primal anguish is the right description for any parent on the death of their ‘special needs’ child when such a bond has been through the fire.
On another note, I checked your 365 project yesterday I think it was .. I don’t think I could comment. But have fun with this.
Thanks for stopping by the 365 page, although I’m not sure I need another place to respond to comments (she says after spending the afternoon trying desperately to catch up).
Thank you for your heart.
And now these Angels dance on Earth too through your words, Christine, in our hearts and minds. My thoughts go out to all Angels who are trapped and now set free. And to their loved ones, who have to stay behind.
Mar
Thanks, Marion.
You said it just right.
In a case like this, I end up thinking of my nephew Jacob, taken too soon, confined in his own way in his own earthly body when he was here.
I know. It’s so sad when that happens. But we go on as long as we’re still here. That’s what I’m more and more clear about every day. I hope you are doing well.
Lovely, heartfelt post, Christine.
Thanks for stopping by Patti.
Wonderful post, Christine.
Thank you.
Sending Karen and her family my heartfelt sympathies ….
Your own words bring about knowing that your book has touched so many…. x
Yes. I can see she is struggling by her Facebook posts. But who wouldn’t be? It will take a lot of time to get through it.
In heaven, they are all free and clear,.
Hi Christine .. how lovely that you and Karen were able to connect and that she has something to hold onto through your words … though Jessica will forever be with her.
So helpful all these blogging friends, comments, meet ups for those who are looking for some form of explanation or thought processes to tap into …
It is wonderful that you wrote your book … with many thoughts – Hilary