The birthday note
My husband, Jared, recently celebrated his birthday – another birthday, he would call it. And since Emma had started communicating, I thought, “Cool, I can see if she wants to spell out a message to him!” I told her that I could make a card for him and she could spell out a note just for daddy. And since I hadn’t actually gotten him anything myself, I thought a special note from Emma would more than make up for it. In the past, we’ve made or bought cards and helped her sign them with her name and maybe do some coloring on them with stickers. Crafts have never been her favorite activity. Maybe she got that from her mommy!
Poor Jared. I know he wants so badly to be able to have Emma spell out for him. I was a little worried about it at first, but then I read that sometimes the person communicating may just feel more comfortable pointing for one person at first. And that person just happens to be me.
There are many things that one fears as a parent of a child with autism. New fears get added along the way of time. And I think as the years go by, there are so many fears and worries built up that you begin to function pretty well with the weight of it. It is when a fear is lifted that you realize how it heavy it was. Jared and I have sheltered MANY fears and worries in our hearts. I’ve worried mostly about the current situations: school, therapy, communication, so on….
But for Jared, the biggest fear he’s carried all these years has been– “If one day I suddenly died in an accident and never came home…How would she know that I hadn’t just abandoned her? Would she ever realize what had happened to me? Will Emma feel utterly abandoned?”
I can hear this dialoque in my head so clearly because I heard it from Jared so many times. This is also coupled with the fear of who will be there for the children when we are gone. In fact, for many of my friends with special needs children, the fear of themselves dying stands above all other fears.
I’m not really sure how most people talk about death with their kids. My guess is that it happens whenever the subject gets brought up. Emma being non-verbal, it never really got brought up, but we never really edited ourselves that much in front of her. We just didn’t know for sure, like so many other things we’ve since discovered.
So, I sat down with Emma on the couch, keyboard in hand, and she spelled this out:
Tears in my eyes, I typed out the message so I could print it out and put it on the card.
Jared was overcome with emotion when he opened the card. Tears came to his eyes and I know that those words had lifted a weight that had been there for years.
He said, “When I think of myself dying, she is always there by my bedside looking down at me.” I had never heard him say this, so I was even more aware of how that note touched his heart.
I asked Emma if I could share this story and her note. She spelled out “yes”. Then she pointed out:
I really get death
I know this may seem like a pretty heavy post, but it’s just another one of those moments that I feel compelled to share, if only for the reason that it might have given me some peace, if I had’ve read it.
For Jared, it was the best birthday gift ever!!