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Lisa Belkin

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A Dying Parent's List

Posted: 06/12/2012 11:06 am

When my neighbor was losing her battle to cancer a few years ago, I stopped by her house every few days to see if I could help. I didn't cry when I saw how much paler or frailer or sadder she looked than the time before. And I held it together when she talked about agreeing to hospice, and upping the pain meds, and signing her will.

But I lost it when I saw the notes.

They were all over the house, square yellow Post-its on which she'd scribbled thoughts and reminders -- almost all of them about her two young sons. A note telling her husband what to buy for the toddler's birthday. And who in his preschool class he most liked to play with. And the songs she sang to the baby at bedtime. Things she didn't want him to forget when she wasn't there to remember.

I am crying now as I write about it.

There is nothing as wrenching as a parent's good-bye. Maybe because I hate any good-bye (I'm the one who leaves a job a day earlier than I have told everyone I would, so that I can avoid the actual farewell moment...) I am particularly undone by the very thought.

I was in my early teens when I watched "A Message to My Daughter," a made-for-TV movie about a young woman who finds a stack of tapes left by the mother who died 18 years earlier. Of course back then I thought it was the story of the daughter, not the mother, but life has shifted my lens, and I dwell on what it meant to be a mom, told by doctors that you wouldn't see your baby grow up, trying to cram everything you want her to know into a 1970s cassette recorder.

Over the years I have dissolved at similar real life stories. Dana Canedy, for instance, a colleague at the New York Times, who lost her fiancé, Charles Monroe King, in a roadside bombing in Iraq. Their son, Jordan, was just 6 months old, and Charles had met him only once, on a leave six weeks earlier, but had filled more than 200 pages of a journal with memories and advice. Mundane messages, like "pick up the check on a date..., take plenty of pictures on vacations, have a strong work ethic, and pay your bills on time," and profound ones:

Listen to your first thought. You will figure this out on your own. Never second-guess yourself. When your heart is in the right place, always go with your first thought. Work hard at things and follow your instinct. Since you were born, you have always been alert. That means you will be very perceptive about things. Believe God and trust yourself. Keep the faith, Jordan. You will be fine.

Or Elizabeth Edwards. In the years before her death in 2010, she kept a file on her computer titled "Dying Letter." "It's more than 'How do you get the core out of a head of lettuce?'" she told People magazine during a campaign stop in Iowa. "It's 'How you choose who you marry and what to expect from that, how you choose a church.'" Looking across a playground at her two youngest monkeying on the jungle gym, she chuckled: "It's got all that butting-my-nose-into-their-lives-long-after-I'm-gone stuff."

And, now, Kate Green, mother of Reef and Finn, who were ages 4 and 5 when Kate died of breast cancer in Somerset, England two years ago. Her own diagnosis came not long after her younger boy was declared cancer-free after his own brutal treatment, and she had clearly thought a lot about the possibilities of loss.

In the days before her death she wrote a list -- some on paper, some in texts to her husband, Singe, as she had more thoughts. After she died, he typed it all into the computer and named the file "Mum's List." He published a book by the same title. Already a best-seller in England, it was released in the U.S. last week.

The list begins:

Kiss boys two times after I have gone.

Go to as many school activities as possible -- praise assemblies, etc.

Please teach them to be on time

Please teach them to say what they mean

Don't fill outside with your boats, give boys space to play

Go camping with cousins or let boys go for long weekends

It continues for pages, including everything from "Mummy liked walks down the riverbank, Mummy loved Finn's laugh and how he sucked his thumb and folded his ear in, Mummy loved Reef's cuddles at night" to "Find a woman to settle down so the boys can have a female influence and stability in their lives."

She urged her husband to "teach them to respect women and not two-time" and to "take them for walks along Mummy's favorite beach where she used to go as a child." "Go to Egypt and snorkel in the Red Sea," she instructed. And place the urn with her ashes "on the top of the wardrobe, with the cuddly toys, to be with the boys a bit longer."

I am crying again.

Every time I seep myself in a good-bye tale like this (if these are not enough for you, there's also Randy Pausch's "Last Lecture" and Bruce Feiler's "Council of Dads"), I open a computer file and vow to write a letter of my own. But I never even get as far as a title. The white page looks enormous on my screen. Where to begin? What to say?

And that brings me back to my neighbor and her Post-it notes.

At her funeral the rabbi talked of her final instructions to her husband. "Whatever you do will be the right thing," she'd told him. In spite of all her lists and suggestions and reminders, her final gift was to tell him that she trusted him to do it for both of them. That he shouldn't spend time wondering what she would have done, or thought, or felt.

Which is all I really want to say in the end. Yes, I want to tell my boys I love them, but I really hope they already know that. And that I hope they find a path in life that brings contentment, even if it takes a few tries. But I know that no matter how eloquently I say that, they will have to figure it out themselves. And that every major decision I ever made was done with their father's advice, and that of the friends I know will step up if I'm gone -- so seek out that advice. But I am pretty sure they will do that anyway.

So, like my neighbor, the only thing left to say is "you don't need a list from me. You already have it. It's with you always -- in your instincts, and your questions, and your choices. Even when they are not 'what Mom would have done,' they are right for you."

And please, wear sunscreen.

 
 
 

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When my neighbor was losing her battle to cancer a few years ago, I stopped by her house every few days to see if I could help. I didn't cry when I saw how much paler or frailer or sadder she looked t...
When my neighbor was losing her battle to cancer a few years ago, I stopped by her house every few days to see if I could help. I didn't cry when I saw how much paler or frailer or sadder she looked t...
 
 
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12:47 PM on 08/03/2012
Crying after that... Cant wait to get home and cuddle with my boys
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ReadHead322
I was born in a crossfire hurricane
08:02 PM on 06/17/2012
Now I'm crying too...
02:48 PM on 06/17/2012
Thank you Lisa for this painful story. It is so hard to face the pain, and too easy to avoid it, but it needs to be faced, because these are the facts of life . . . and death. How unusual, and appropriate, to have such a story on Father's Day. I keep thinking I ought to start writing letters to my children, but of course have not gotten around to it. You helped bring me out of denial and toward doing the right thing, for which I am grateful. The thing about these stories that is MOST moving is that when a parent is dying, the ultimate me-crisis, she/he is capable of thinking of others in so focused and consistent a manner. This demonstrates the inherent greatness of humankind, and sets a standard for all of us to shoot for. Thanks again. And may you be comforted in your own griefs.
12:13 PM on 06/17/2012
If you're caring for a loved one, please know that members of the Friends of St. John the Caregiver (www.FSJC.org) around the world are praying for you and your care-receiver.

This is how to get a free copy of "The Little Book of Caregiver Prayers":

http://www.youragingparent.com/contact_us.htm
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bjdjtjbjd
04:37 PM on 06/15/2012
You have to ask yourself, why? Why does a mother have to die and leave her babies without a mom?
You have to ask yourself, why? Why doeas a child have to suffer with the pain of a terminal illness?
Why, is there fatal accidents to people that seem to do everything right and do some much good to others?

This story just breaks my heart...you wish you can take the pain away from all that are hurting!
07:44 PM on 06/15/2012
You are a very compassionate person. Here's the way I feel it works. The world has a Devil and always will, as well as a God. God can't do away with the Devil and the Devil can't do away with God. Whatever the Devil does wrong God will make some good out of it.
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bjdjtjbjd
05:51 AM on 06/16/2012
Yes, Chuck. I understand...
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HUFFPOST SUPER USER
Kibblet
.This is it, that's the end of the joke.
09:12 AM on 06/17/2012
So God isn't all powerful after all. Honestly, sounds like the lamest excuse ever. Either God is weak, or God's a heartless jerk. That's all I can come up with.
03:35 PM on 06/15/2012
My incredible oldest sister will be surviving her husband who was diagnosed with ALS about 1.5 yrs ago. She lost her father-in-law 4 weeks ago, and our father 2 weeks ago. She and her husband have three incredible children who adore their father. I don't even know how to approach her with articles like this. I want to be available to help, to listen, and to support, but I don't want to be the constant reminder of the short timeframe that is left. I wish you all were blessed to know a person like my brother-in-law. For his children he is a coach, a counselor, a confidant, a guardian, a care giver, a source of love support and kindness, a disciplinarian, a friend, a father. And as a husband he is a true partner in every sense of the word. So, so sad. If anybody knows experimental treatments or studies where they are looking for people with ALS, pass'em along.
01:00 AM on 06/17/2012
I lost my husband to ALS in March. He noticed his first symptoms a year ago when he was beginning spring training for his baseball team. We have two children, a 13 year-old and a 16 year-old. There is no way to prepare for what we went through the last year. My husband had been a stay-at-home dad for the last three years after losing his job to the economy. It turned out to be a blessing, but it was hard to see at the time...He was able to spend so much more time with our kids - he coached their sports teams, and volunteered for field trips and school events. He was home for them. In the year before his death, he lost function every day. From not being able to use his arms, to not being able to swallow, to not being able to breathe. I am a healthcare professional, so I researched every clinical trial that is out there for ALS, and there aren't many. We need to do more to find a cure for this disease. It took my husband so fast. We were together for 26 years, and I still can't believe that he is gone.
03:19 PM on 06/17/2012
I can't begin to imagine the pain that you and your family have suffered since the lost of your husband. I can only pray that time heals all wounds, and hope that you are blessed with immediate and extended family and friends that can constantly remind the children of their dad. I wish you all the best.
03:58 PM on 06/17/2012
I am so sorry for your loss, Jeanne. How awful to lose your husband that way, and so quickly. My 47-year-old brother was just diagnosed with ALS less than three weeks ago. My family is now embarking on that difficult path, and I fear and dread what's to come. Mostly, my heart breaks for my sweet, sensitive brother and what he is facing, along with his wife and two young daughters. What an awful, cruel disease.
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klavezo
03:15 PM on 06/15/2012
At least she knew she was dying, my mom was kept in the dark about it.........Anybody that is going to die should know the truth..........
06:53 PM on 06/17/2012
>>But as I read this after leaving the hospital visit with my father, who has just been diagnosed with terminal lung cancer, I remember how he said that he should have never gone into the hospital for the biopsy last week. He said today to me that he would have rather not known.
03:13 PM on 06/15/2012
I have 4 life threatening diseases - Interstitial Lung Disease, COPD, Diabetes 2 and CHF,plus neurmerous side affects from Diabetes. Any one of these will take my life when God decides it's time. I also have a niece who just turned 6 years old. This little girl is the love of my life. I love her almost as much as I love my husband. Fortunetely this precious child lives with us and her Mommy. I don't spoil her and her Mommy has the WORD. However, I spend as much time that I can with her. Most importantely I listen to her. I talk with her, I play games with her, no matter how silly they may be. We play games on my computer together. We sit on my swing, we watch TV together as long as she wants to. When she wants to go do her thing, I encourage her to do so. I feel that when I am gone, she will have many memories of us and I think these memories will carry her through, much better than a note from me. She knows that I am sick, but I am not sure if she understands how sick I am. Maybe she does???? She does understand how much I love her and time together has given her momories of this deep love we share. Not that notes are not good...they are. Perhapes I will write her a note.
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bjdjtjbjd
04:45 PM on 06/15/2012
Your time with her is very important indeed, you should write her a note or two...you know, something that will remind her of you when she is growing up..the memory starts to fade as we grow! This way, the notes will be with her for the rest of her life.

God-speed, grnina4.................You have just been fanned and faved as well!
12:53 AM on 06/17/2012
I'm sorry if this sounds cold, but I have to ask... Do you still smoke?
Savannah5
Happiness and Peace
02:50 PM on 06/15/2012
How do you fill up a paper with a lifetime of advice? With love.
02:34 PM on 06/15/2012
The words I want to say are heard in the tears that are falling down my face.....
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hayleebugsmith
02:18 PM on 06/15/2012
The author was crying as she wrote it- i was crying as I read it. Could not finish the article because of the tears.. That is what a Mother would do if she knew she was not going to be here--- make a list of last wishes, and instructions... maybe I can finish the article later-when I can see without the tears.
Savannah5
Happiness and Peace
02:52 PM on 06/15/2012
I offer you a symbolic kleenex.
Thanks for caring about another human being.
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Pferdefreund
May I always be the person my dogs think I am.
01:59 PM on 06/15/2012
Notes are great and this is a wonderful story. My mother died of Alzheimers, and it was the most horrific thing my dad and us all went through, however, notes were not necessary, because she was the best person we have ever known and even if she could not express it any more during her last years of suffering, our hearts will never forget. So do not write notes - tell your family every day and show them how much you care. Our mother did not leave notes, but she left us with a lifetime of memories.
01:52 PM on 06/15/2012
After a 22 year long battle with cancer, my mom had come come out of remission twice--recovered magically the first time, but the second time, we knew time was growing shorter. I happened to be there when Mom suffered a grand mal seizure in her sleep, and I resuscitated her. Our last 64 days, her's much harder than mine, were tough...but there were magical moments of her insights and still teaching me even when I was (then 38 years old), watching and caring for her. Both my mom and dad told stories and put a number of things on tape. In our home, and our woodworking shop, is chock full of the both of them, virtual pictures of their life's journey together. All of my dad's tools are with me, and those things of my mom are here, too, including the china hutch she designed (and finished) and Dad created from her vision. Thank you for this story...a reminder for me, just how blessed I am to have had the parents I had.
Savannah5
Happiness and Peace
02:55 PM on 06/15/2012
You still have your parents with you. They occupy a part of your heart.
03:56 PM on 06/15/2012
How blessed you were to have been able to take care of your mother the way she took care of you when you were younger. My grandmother and her sister took care of my great-grandparents until they died and they told me they wouldn't change one second of it for anything. I know my mother would take care of her mother as I would take care of my parents. What a touching and incredible story. Thank you for sharing and God bless!
04:42 PM on 06/15/2012
When Mom's last hospital admission had occurred, I was her signatory for "Do Not Resuscitate--DNR" orders, and I did so in accordance with Mom's wishes. After radiation and the three lemon-sized tumors in her brain had been reduced in size, and Mom was lucid, she had to sign her own DNR. I told her of this...and that look, the one of laser focus and intensity, and acceptance just pierced me. She said we needed a "cup of Joe" first...walking down the hall to get that "cup of Joe" I just trembled and wept...

When I returned, and she'd taken her first sip of coffee--she looked at me and said: "Lord, a cigarette would be really good right now!" And she just laughed and so did I. And then she looked at me deeply and said:

"I'm lying here dying...because I would not let go of stuff from years ago. You make sure and let go of the junk that hurts you. Joey, I'm going to miss you terribly." Fact is...she was saying what I was saying in my head...

Tears streamed down both of our faces...

This is why, I've never had much use for whiners, moaners, gripers and complainers--here this 76 year old master of numbers (and pretty much everything else), was standing up, even though her tiny legs wouldn't hold her...talk about honor...WOW!
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smeeg
you have to give respect in order to get respect
01:50 PM on 06/15/2012
what a wonderful story. I bet every mom that read this is crying as I speak like I am :D thank you for sharing :D
01:40 PM on 06/15/2012
This is so very touching and emotional. I started to cry at the very onset of this story and continued to do so up till the end. This has got to be the most well written story that I have read here on the Huffington Post.