The hard part: A teen's experience of grief

I'm delighted to share the story of another BLOOM reader, Rose-Marie Gallagher. Rose-Marie is a special educator and parent to two teenagers, one (above) with significant disabilities. Here, she writes about entering the uncharted territory of her daughter's own grief. Is this something you've experienced? Let us know. Thanks! Louise

The hard part: A teen's experience of grief
By Rose-Marie Gallagher

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

Though her birth and infancy were delightfully typical, her first birthday marked the beginning of change. Her hand use slipped away over the next few months and her progress towards walking disappeared. Physical discomfort, repetitive hand movements, and sensory disintegration took their place. She lost the ability to chew and to swallow safely. Deep silence replaced her words and joyful babbling songs. When we did hear from her, she screamed inconsolable cries born of the inability to express her pain or fear of the changes happening inside her.

We traded dreams of bicycles and prom heels for a wheelchair and ankle-foot orthotics. Instead of a VW Beetle, her ride would be an accessible van. There would be no mother-daughter fittings to sew her wedding dress; rather, we would plan the suite in our home where she will live the rest of her life with her father and me.

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

During that time, through much help from her therapists and doctors and especially from our daughter herself, things did settle. Medication and a g-tube gave us the upper hand on some of her pain and a way to feed her safely. She learned to process the world around her without feeling overwhelmed. We learned to read her eyes as she gazed to picture symbols to communicate. Our little girl blossomed out of her social isolation into a delightful young lady.

I reached a place of peace.

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 still do have one of those “I hate Rett syndrome” tantrums when no one is looking).

Several weeks ago, however, brought a new perspective to grief.

One 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 dry erase board and yes/no questions to find out what was bothering her, and she quickly, deliberately answered my questions with her eyes.

I wrote key words in the corners of the dry erase board and “something else” in the center. She looked to each phrase as I asked about it.

“Are you in pain?” – no response means “no”

“Did someone hurt your feelings?” – no response

“Are you unhappy about something at school?” – no response

“Are you frustrated?” – yes!, her eyes moving instantly from the word up to my eyes, pleading for me to understand.

There is no need to ask if “something else” is bothering her.

I held a “yes” card in my right hand and a “no” in my left. She responds by fixing her gaze on the cards.

“Are you frustrated because you can’t walk?” – yes, new tears welling.

“...because your hands don’t work?” – yes, breath catching, lip pouting.

“...because you don’t speak?” – yes, shoulders shaking.

She slumped her body against mine, eloquently saying as much without words as if she had spoken.

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. 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 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 to “make 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?

Rose-Marie Gallagher trains parents and educators on ways to build literacy and communication skills in children with multiple disabilities. She and her family enjoy life on a small farm in Washington State. Check out her blog about special-needs parenting and teaching at Adapting Creatively.