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...


The MacDonald Family said...

This is heartbreakingly sad but at the same time also so beautiful. What a wonderful mom you are, I can only hope that I will be able to handle a situation like that when/if it arrises with my little Annie. Being helpless is something I feel a lot, constantly learning and relearning that things are completely out of my hands. Hugs!

Clara-Leigh said...

Wow. Heavy. I have no books to recommend or meds to "fix" it, but I do promise to pray for you all. My husband and I are in the muck of the grief. It does come and go and much like the tide. I am so sorry, but I also know that grief brings us to a better place in understanding or just being more comfy in our own skin. I will be praying.

Anonymous said...

Oh, I am so sorry that A. is dealing with this! I cannot even imagine. C. has shown no signs of it, and I'm not sure if she ever will, she's never been quite so frustrated as A. has been over her lot in life. I wish I had ideas, I don't, I just wanted to let you know we're thinking of you all. Joan

Rose-Marie said...

Thanks for the hugs, Bridget. I think you are very wise in helping Annie develop the ability to express herself on her ECO. That should go far to let her talk through the things that bother her. Maybe that will spare her from having those feelings hit all at once.

Here are hugs for you in hopes that makes you feel less alone in feeling helpless. While you may feel it, the fact that you are working with Annie on language gives her power. For her to someday be able to put her questions and fears into words removes some of her helplessness. Maybe knowing that you are being proactive will help take away some of that helpless feeling for you, too.

You are so right; things are out of our hands...they are in better Hands than ours. What a good thing!

Rose-Marie said...

Clara-Leigh, thanks so much for your prayers. I will be praying for you and your husband, too. You describe it so perfectly, the "muck of the grief." It is a messy, unpleasant place to be.

It would be nice if we could gain understanding without having to go through grief, but it doesn't work like that, does it? You are right that we are stronger for it...roots going down through "the muck" are very strong!

Your comment made me realize I should have given a warning about this being a heavy topic...I'll do that if there are any more heavy posts in the future.

Thanks again for your prayers...

Rose-Marie said...

Aw, Joan, thanks. I appreciate you thinking of us. C. is such a brave... With as much as she has had to deal with over the years, I wonder if she's already come to terms with things?

Thanks for always being there...

Anonymous said...


I tried to post a comment under your blog, but it didn’t seem to go through. My heart goes out to you and your daughter. My daughter, now 21, suffers from severe chronic pain, despite multiple surgeries and being on heavy-duty medication. She has a meltdown every few months. It is heart-wrenching. I stopped trying to “fix it” – I know I can’t do that. It was a BIG lesson for me. I just listen, commiserate, and offer comfort, then try to build her up again when she has calmed down. I learned to do Reiki and other energy work. It really helps her, both with her pain and calming her down. Check out this website: . She has some fabulous meditations and guided imagery, geared for children. We use them at my school (a school for students with severe developmental disabilities). Another book comes highly recommended, although I haven’t seen it myself – “Nobody’s Perfect” by Nancy B. Miller.

Have you thought about creating an “All About Me” scrapbook with her? It will give her a chance to express herself (with your help). You can include photos of doctor visits, taking medication, etc. You can also add many positive things about her. By creating her own book, she can view it over and over, and share it with teachers, etc. if she wants to. It can be very therapeutic. I used to run a parent scrapbook group at my school. There is a great article called “Creating a Life Book” by Joan Guthrie Medlen. It is in one of the Disability Solutions newsletters – not sure which one – at this site:

I hope this is helpful! I enjoy reading your blog!



Rose-Marie said...


Thanks so much for your kind email. Your comments will be very beneficial to other families, so I've posted it for you (with Karen's permission).

I appreciate your support and practical suggestions and the links. I will definitely look into them.

The guided imagery idea has some interesting possibilities because that mental rehearsal is something my daughter could fall back on when we aren't there to help her. There are some really comforting Psalms we could be use to create soothing, reassuring mental pictures, too.

The scrap book idea is also a good one. It's hard to look at what she has lost. But if we can remember the good from those times and allow her to feel sad, that might help her work through it. How fun to look at what she is able to enjoy now; it's a new kind of good. I'm looking forward to reading the article you suggest.

Thanks for taking time to write and to read the blog...I greatly appreciate it!

Rose-Marie said...

Karen graciously shared the following link for creating a life book that might be a helpful tool for many kids to process their feelings about their lives. See her excellent ("Anonymous") comment above.

After reading the article, I’m excited to give it a try. What a great summer project with the kids!

Thanks Karen!!! Your contribution is going to help a lot of kids and their families.

Tara Bennett said...

What a touching post. This just breaks my heart. I often worry about the day Chloe will grieve, and she is so bright and aware that I know it will come. One way I have prepared for it is by sharing "her story" with her often. Her dad and I both take turns talking about what happened and how much we love her not inspite of her physical condition, but just because of WHO she is. I can already tell when she is around other children that she feels sadness because she is different. She gets frustrated when she tries to get up and run and cannot. She gets sad and angry. I see it. I know her grief is coming. I'm grateful for the otehr resources that were recommended and will most definitely check them out. Thank you!

Rose-Marie said...

Thanks for your comment, Tara. I suspect the ground work you and your husband are doing with Chloe to speak openly about her history will serve her well. It won't be an easy day for you when she tries to process her own grief, but the fact that you are giving her skills and support now (because you are, through your stories and openness) should really help her. It also won't catch you unaware and that is a very good thing!