Grief from a New Angle

Grief is a slippery creature. About the time you think you have it tamed, it shows you a new side of itself.

When my daughter received her diagnosis of Rett syndrome nearly 14 years ago, I grieved. I grieved for what she would never have. I grieved for the “normal” experiences I had anticipated in raising her.

Through much wrestling and praying and struggling, I worked through my own grief. It took several years.

It isn’t that I actually like Rett syndrome, and would never wish it on the vilest enemy, but I have come to accept both it and our new normal. What began seeming like a curse has brought us tremendous blessing.

(Once in a l-o-n-g while though, I must admit, I do have one of those “I hate Rett syndrome” tantrums when no one is looking).

This past week, however, brought a new perspective to grief.

Friday, grief hit my daughter.

And I’m not sure how to handle that.

She was sobbing when I went into her bedroom to get her up for the day. It wasn’t a cry of physical pain. It was tears-streaming, pouty-lipped, breath-catching, my-heart-is-breaking sobs. She seldom cries like that.

I did the best I could using words on a white board and yes/no questions to find out what was bothering her, and she quickly, deliberately answered my questions with her eyes. It boiled down to her sadness and frustration over all the things Rett syndrome has taken away.

This was a very complicated discussion for me, because I didn’t want to plant unhappy ideas that didn’t already exist, giving her even more to be upset about. But we muddled our way through and she was heroic in her strength to respond and press ahead.

I am so proud of that girl!

Of course, it was all I could do to fight back tears of my own, I felt so badly for her. In the end, I gave in and cried right along with her.

We shared a good cry, a long snuggle, some soul-baring prayer, and I let her stay home from school so we could have a mother-daughter day. If she needed to talk some more, we would have that luxury. She was probably too distraught to have had a productive day of learning at school anyway.

She wanted to curl up on the couch together and watch “Ugly Betty” reruns. It was a good distraction and the day ended much more cheerfully than it began. She hasn’t seemed grieved  since.

We all need a chance to vent our sadness and frustrations sometimes. I feel so blessed to be able to give her that opportunity.

Yet it does leave me with some questions.

Before, in processing my grief, it was my own grief. I owned it. It was a selfish, look-how-this-syndrome-twisted-our-lives grief. Sure, I felt sad over the losses our daughter had suffered and the experiences she would never enjoy. But even that was my grief over her missing out.

This experience awakened grief in a new way.

I got to see what it is for her to ache over her own losses. It had nothing to do with me at all.

Now what?

Is it possible to work through what I do not own?

Unfortunately, no.

This is grief I cannot process for her; it’s something she has to process herself. Yet she has no means to express words, no way to talk about the things bothering her most.

The things I did to work through grief--talking with my husband and family and friends and eventually a counselor, writing out my unlovely thoughts, even shouting at God (it wasn't pretty, sorry)--are not options for her.

Somehow, she is going to have to work through this on her own.

Not that she's completely on her own; the Lord is with her. But still, this is her own grief to process through.

So tell me...

How do I help her?

The helplessness is familiar; my husband and I have been helpless in “kissing the boo-boo” of her syndrome and “making it go away.” Only after we surrender its suffocating weight can it be lifted so we can breathe again.

Truly, I am at a loss. This is uncharted territory for me.

Have any of you helped your kids process their grief when it hit them? How did you do that?

Do you know of any recommended reading? I’d appreciate the name of a helpful book right about now...