Friday, August 5, 2011

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.

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8 comments:

Oh Rosie, This cuts deep doesn't it. I've taken several attempt to read this entire blog post (because you can't read when you have to roll your eyes to the ceiling to stop your tears from dropping onto your laptop keyboard)

The worst thing I have experienced as a parent isn't my own struggles with certain aspects - but the fact that I can't protect my precious child from everything. His heart will hurt, he will cry, things will trouble him... as a parent, we want to protect them from all the harshness of the world. We can't, and that breaks our hearts.

I don't have the answer to your problem, I wish you all the best in figuring out how to deal with it. I wish your beautiful daughter many smiles and as much happiness as she truely deserves.

Please take a second to read my blog, I would love - with your permission - to use your story in my book....

Much love and heartfelt thoughts,
Trine
http://alittlelessalone.blogspot.com

Dearest Rose-Marie,

I have always admired your candor and wisdom when commenting, here, on BLOOM. However, today, I say to you, "Each one of us is equally blessed by your unwavering courage and the all encompassing love which you feel for your daughter."

For, grief and anger, in relation to a disability, will rear its ugly head from time to time, but no one is powerless against this, as we can choose to move forward by understanding our difficulties and deciding who we are going to become.

For instance, when I was discharged from Holland Bloorview, at 16 years of age, I was still in High School and in top physical condition. The years passed, my cerebral palsy worsened. I could no longer attend university and was diagnosed with multiple learning deficiencies. My dreams were dashed.

Nonetheless, I began taking one day at a time. I also realized that in spite of my disability, and my many losses or disappointments, I was still human, with the exact same needs and wants as anyone else.

Moreover, I also began to comprehend that my social development was stagnated due to my struggles, as I did not know what it felt like to talk to a friend, go to the movies or take a girl out.

Nonetheless, in the beginning (around the same age as your daughter) I took notice of the day-to-day undertakings of my siblings while watching reruns of Dawson's Creek. This allowed me to work through my pain and understand my emotions. Afterwards, I became empowered and could decide the next step for myself.

Now, you may be saying to yourself, "This is all well and good, but my daughter's disability is much more severe. For, she cannot walk or talk and her hands don't work." And, all of this is true. However, you are overlooking two very important things. First, "You taught your daughter how to speak." Second, you have not considered that, although you are now in a place of peace, "her pain is your pain --you own it, and know it all too well." Consequently, it is now your daughter's turn to mourn, to curse God, and to find acceptance.

Unfortunately, she can't do it on her own, you need to help her. For, I suggest to you, "Maybe, your daughter would have loved to be fitted for a wedding dress; I would love to dance with my Mother at my wedding, but this, most likely, will never happen.

In addition, you must also understand that in spite of your greatest efforts, you will not be able to assist your daughter with everything. For example, my Mom and I can lament the fact that we might not dance at my wedding, however, I can't bring myself to tell her, "I don't know how it feels to intimately touch, kiss, or caress the women I love."

Hence, I would start by watching a television series like Degrassi or a few movies with your daughter, allowing you two to talk when an issue arises --you'll know when it's time.

Although I'll always be here to help, you are the only one who can walk through this door with her.

May God bless you both.

Yours truly,

Matt Kamaratakis

Thanks for such a kind comment, Trine! It's hard, isn't it, this inability to shield our kids from the difficulties of life? Maybe the best we can do for them is to find ways to help them cope and to set a good example of coping ourselves. Sure wish I had the answers!

I'm eager to take a look at your blog. See you there!

Rose-Marie

First, great post. I love this topic of grief because it's complex and too often overlooked by us parents. Second, I once explored this topic on Hopeful Parents titled "Good Grief. Bad Grief." because I wanted to write about my experience and make sense of the process itself. As my daughters age, I now understand from your post that it's something that I need to be willing to discuss. I think Matt states some pretty good thoughts above. In grieving, the best you can do is the best you can do for and with your daughter. I'm no expert but it might be helpful to share your grief process/experience with her. Let her know how you got through it, help her feel assurance and less isolation. We often don't talk about grief for what it is - getting unfinished business completed. I think the more we share about what has worked for us (the good, the bad and the ugly), the better we can help others learn about their own process, child or adults alike. The amazing fact that you are communicating is inspiring to me (can't wait to start trying it with our oldest). If it were me, I'd sure hearing what the experts say and listening to other parents/children's stories, which might be helpful at such an impressionable age. Good luck Rose-Marie. Keep up the great writing!

Matt, thanks so much for your insightful comments. I appreciate you taking time to share your encouraging words of wisdom. Thank you.

I especially like your suggestion of watching together shows and movies (and reading books) that tackle difficult topics. Being able to observe my daughter's reactions should help me know better how to support her in what she might want to say. This could be an excellent way of sparking conversation that helps her process her feelings. The characters and situations offer her concrete examples I would understand, having watched with her.

You also said something, Matt, that helps me feel a lot better in my parenting. You said that I have taught my daughter to speak. It may not be the independent expression I so desire for her, but neither is she left alone in her silent world without an outlet. Thank you so much for acknowledging the value of what she is able to do, even if it takes full support. That affirmation means a lot.

Your comment leaves me feeling very hopeful. I'm grateful my daughter is not a person to sit around feeling sorry for herself but, as you point out, we all have a common need to work out our disappointments and losses. It's a privilege to be able to muddle through that with her.

You've given me lots of good and encouraging things to think about. Thank you so much.

Gratefully,
Rose-Marie

Thank you Tim and Rose-Marie, as your words do not only mean more than you'll ever know, but they will never be forgotten.

Moreover, I also wish to tell you that your children will find a reason to press ahead, even in the direst of circumstances. For, they will feel utterly defeated and hopeless on occasion, but one can discover greater clarity, reserves of strength and a new found sense of purpose through suffering.

For instance, I have failed more than most (my Mom would argue otherwise --her love for me clouds her reason) in trying to find my way, but a friend pointed me in the direction of BLOOM, and today I am seriously contemplating going back to school to earn a degree in Public Relations. I simply want to earn the privilege to work alongside all of you.

Without the ability to read, foster a new idea, or punch the keys of my keyboard, be it one at a time, I would truly be dead inside.

Never surrender!!!

Forever yours,

Matt Kamaratakis

All of you are amazing! I am so grateful to have read this blog/post TODAY. My son has been in a wheelchair since March 2008 from a car wreck when he was two years old.

Rose-Marie, I also had those screaming situations with God and the why, oh whys. My son is only 5 now but I had a scary experience today when he asked if he could have a ‘different life’ when he gets to Heaven.

I questioned him on why he wants a different life (not really wanting to hear what I was dreading). Luckily, he said it was bc I wouldn't let him play a computer game which I think is too mature for him right now. Whew!

This started my thinking that maybe I've still not truly dealt with all the emotions that would help me help him when he is ready to question this life he will live.

Seeing as you have had more years than me to arrive at this place, maybe I don't have to be ready yet, and maybe I never will be until it is THE time to handle.

I clearly do not have any useful info to offer you, but thank you for letting me see how the situation has been played out before me and how beautifully you welcomed the questions/pain you knew your child was dealing with. I hope to be that strong (as sooner, rather than later ).

Thank you again!

iI READ YOUR ARTICLE ABOUT GRIEF. I AM A FATHER OF 2 BOYS WITH A RARE GENETICAL DISORDER CAUSING THEM BOTH TO HAVE C.P.. MY OLDEST SON WAS BORN IN 1983, AND WAS GIVEN 6 MONTHS TO LIVE AND WE SHOULD JUST LEAVE HIM IN THE HOSPITAL AND GO ABOUT OUR LIVES. YA RIGHT! WE TOOK HIM HOME AND LIFE WENT ON. 4 YEARS LATER WE HAD A HEALTHY DAUGHTER. 4 YEARS A SECOND SON WAS BORN WITH THE SAME RARE DISORDER. THINGS HAD CHANGED A LOT IN 8 YEARS AND OUR SECOND SON WAS GIVEN BETTER CARE. FAST FORWARD, THE BOYS COULD NOT WALK OR TALK BUT LIFE STILL WENT ON. THEY BOTH HAD MANY SURERYS AND PROCEDURES OVER THE YEARS BUT THEY WERE RELATIVELY HEALTHY.
IN JUNE OUR YOUNGEST WHILE IN EMERGHENCY FOR AN ABDOMINAL BLOCKAGE WENT INTO RESP. ARREST, AND I WAS ASKED THE QUESTION (DO YOU WANT US TO SAVE HIM) THAT NO ONE SHOULD HAVE TO ANSWER.
HE WENT FROM A HEALTHY 16 YEAR OLD TO LIFE SUPPORT WITH TOTAL ORGAN FAILURE. 4 TIMES WE WERE TOLD TO SAY GOOD BY. AFTER 90 DAYS HE GOT OUT OF PICU AND INTO A WARD FOR 60 MORE DAYS.
2 WEEKS BEFORE HE WAS DISCHARGED FROM HOSPITAL OUR OLDER SON WHO NOW IS 25(GIVEN 6 MONTHS TO LIVE AT BIRTH) GOT A BLOOD INFECTION AND PASSED AWAY SUDDENLY.
GRIEF ! THERE IS NO RIGHT OR WRONG WAY TO GRIEVE. I DON'T SAY WHY, I SAY WHY NOT MY SONIS NOW NOT NEEDING A WHEELCHAIR WHERE HE IS NOW AND OUR YOUNGER SON IS AT HOME WITH HIS PARENTS WHERE HE SHOULD BE LIFE GOES ON