The story I cannot edit

August 20th, 2013 § 47 comments

This is the last week of summer before school begins.

IMG_6370 This summer was a big one for us. Youngest Tristan went off to sleepaway camp for one week and loved it so much that in the end, he stayed for a month. Paige and Colin returned to camp as seasoned veterans and had a wonderful time in their home away from home. All learned new skills and made new friends. Paige and Colin’s constant banter of camp stories at the dinner table are now supplemented by Tristan’s own stories.

I’m so pleased they could be in a place where they could just be kids, not worried about me, free to be carefree and happy. It is my gift to let them go, to not keep them here for my own needs. While I want to spend as much time with them as I can, I know that this is what they all needed to do this year.

IMG_6837I sit back and smile now, loving that they all have a common reference point of their weeks at camp. Despite the eight year age gap they all find laughs and joy in their summer adventures. They look older to me, of course. And while others are sad about the passage of time and their children growing older and being independent, I say again that I cheer it.

You see, my job now is to prepare them for life without me. My goal is to show them how to accept the help of others but not be reliant on it. I choose to show them every day that there is determination and nobility in facing what life throws you. You may not be able to change the final outcome, but you can change what you do to be ready for it. The strongest way of teaching this right now is by living my life deliberately, making choices and showing them the best I can be. This doesn’t mean denial. Nor does it mean I don’t lose my temper or raise my voice or fall apart sometimes. To be emotionally numb or invariable in my response to what is happening is not healthy. I try to show them that expressing what they feel is a better option. Emotions of anger and sadness and grief and fear are fine to have. It’s beneficial to talk about them, but dwelling on them won’t make things better. Acknowledging their reality, their truth, their basis is what’s needed.

As I always say when I get bad medical test results: a short pity party is good. Then you have to pick yourself up and move on.

 

IMG_6403It has been almost eleven months since my diagnosis of stage IV breast cancer, and there isn’t a day that goes by that is free from concern. I notice myself being more and more affected by the daily chemotherapy, feeling more fragile, more vulnerable. I have already had one bad respiratory illness this summer, and I worry about the school year and all of the potential colds and infections that will be transmitted. I don’t want to think about the ways cancer affects my daily life, but I must. The decisions I make about activities, treatments, and chemo all directly affect my life… both in length and quality.

I push myself to do the most I can. I try to do all of the little things that add up to a full day: school supply shopping, back to school haircuts, camp laundry, new shoes, sports registrations, and walking the dog. I also request meetings with school administrators, coaches, and anyone new in my children’s lives for this fall that need to know how my kids’ home life differs from the one they had a year ago.

I’m a planner. I take comfort in routine, the familiar, the predictable. Unfortunately, those are now removed from my life forever. Yes, I know life always tosses everyone curveballs. That’s what life is. But I experience it in a whole new way. I have no way of saying life will ever return to “normal” or even a “new normal.” There will not be a “better”… I am not “sick” in that I cannot recover.

I still feel the drive to help, to counsel, to educate. But am finding it more difficult. I hate saying no but know I will need to start saying this more. In-person interaction is very difficult for me. While no one would know it to look at me, social interaction is extremely draining these days. I try to minimize contact knowing that when I am in public I am under scrutiny. People want to know how I am. They want to be reassured. They look at me for clues as to how things are. There is no reassurance I can offer. This is a disease of progression to the end, a story that will not have a happy ending.

I want the story that I am living to be a good one, to the highest degree it can be. I want the story for my family and friends to be one full of love, memories, and devotion. These people are the center of my world.

I want the story to be different from what it has been, different from what it will be.

As a writer I am used to editing. Revising. Changing what I don’t like.

But I can’t edit this story.

I can’t start it all again.

And so I write through it.

The only way out is through.

But this one… well, this one is quite simply going to have a sad ending, as many stories do.1

  1. I have been at the new, increased maximum dose of my current chemo for the last two weeks. I am still monitoring test results and getting more information about its efficacy. I may need to change my chemo again. It’s a challenging and confusing time right now and I don’t have all of the information I need to plan what to do next. The coming week will be full of tests and meetings and research. []

Children grieve differently

December 2nd, 2011 § 4 comments

I’m working on a new piece about grief during the holiday season, but really want to re-share this short post for those who missed it. I actually re-read it from time to time to remind myself of a valuable insight I had with two of our three children. This was originally written two days after their grandmother was killed in a car crash in 2009.

……………………………………………………..

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in a breast cancer fundraiser with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

Children are different

March 6th, 2011 § 0 comments

Written September 18, 2009

Children are different.
From adults.
From each other.

I had to give two of my children different directives this morning:
One I told, “It’s okay to be sad.”
One I told, “It’s okay to be happy.”

I needed to tell my 7 year-old son that it was okay to cry, to be sad, to miss his grandmother.
I miss her too.
And it’s okay to let your emotions show.
It doesn’t make you a sissy or a wimp.
What it does make you is a loving grandson.
A grieving boy.
A bereaved family member.

But my ten year-old daughter needed a different kind of permission slip today.
I sensed she needed permission to smile.
To laugh.
To be happy.
I needed to tell her that it was okay to forget for a moment.
Or two.
To forget for a few moments that Grandma died.
It’s okay to still enjoy life.
The life we have.
Grandma would want that.
I told her that Grandma loved her so much.
And was so proud of the person that she is.
I reminded her how Grandma’s last phone call here last Sunday was specifically to tell Paige how proud she was of her for walking in the Komen Race for the Cure with me.
It’s okay to still feel happiness.
And joy.
It’s okay to let that break through the sadness.

Children are different.
But they take their cues from us.
I know my children.
I know that this morning what they needed from me was a sign that it was okay for them to feel a range of emotions.
It’s healthy.
Because what we are living right now is tragic.
And confusing.
And sad.
And infuriating.

If it is all of those things for me,
It can only be all of those things and more
To my children.

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