The Love Letter You Must Send Your Children

Having recently lost my mom I've experienced first-hand how the days after losing a parent is a blur of emotions and things to do. Emotions you often can't wrap your head around, urgent decisions to make and the list of new responsibilities are overwhelming. 

As a single mom, it will be my daughter in this situation one day. In her case she won't just have to deal with losing me, she will instantly inherit the care, oversight and decision making for her special needs sibling. An overwhelming task for a parent much less a sibling, who is grieving too.

Like each of you I've been thinking about this for years and I constantly ask myself "how can I minimize the burden that will fall on her beautiful shoulders?" And here is what I've come up with so far.  Despite my always telling my kids, not to worry I'm going to live a very long time; I finally got real with myself and found a way to talk with my daughter about my death without scaring her. We talk about death in a loving and matter of fact manner, like any milestone we were planning for, a "one-day" thing. I laugh when I say "We both no one get's out of here alive". I am always telling her I love her and it's my responsibility to prepare. I can't take away the pain or the burden, but I can do all I can to ease the burden when the day comes”.  What I have found is that in talking she knows I understand what she is going to inherit as it relates to Nick, and that I love her and want to do everything in my power to help them both. I can tell it helps her, because she hears that I'm thinking not just about Nick but about her, and she get's the reassurance of knowing there is a plan. 

Perhaps most important of all is that I talk to my daughter all the time about what I'm planning and what to do when that day comes. I routinely tell her where things are, from my burial/funeral plans, how to get money right away, what insurance policies I have, and I check in with her routinely to make sure she remembers. 

No one likes to think about their own death, much less imagine the day we won't be here to care for our children, but the day will come.  And the thing I want to share most is no matter what your plan is, no matter how simple or complex I hope you will take the time and write an ‘I Love You Letter’ sooner than later. An "I Love You Letter" is essentially an easy-to-read guide to our personal wishes combined with the sort of practical and financial information survivors are too often left scrambling to find. In addition to all the plans and conversation I've written one for her and she will get it when the time comes.  And in my case my letter includes encouragement and gratitude for having the best daughter ever!

Also, writing an I Love You Letter can strengthen the  your estate plan if you have one. Because while your will should spell out what you want to happen to your assets and other items, it can take weeks or months after you pass for the legal process to start. In the case of my mom who had a will and a trust it will be almost one year before her estate is settled, and I'm told that is a good scenario. Although not a binding legal document, an I Love You letter can provide certainty in an uncertain time and help bridge the information gap in the early days while your will winds its way through the court system.  

Writing your letter

Aside from any personal messages you would like to deliver to your bereaved friends and relatives, the well-conceived I Love You Letter relays information concerning any important documents as well as account numbers and contact information for bank, brokerage or other financial accounts. For example, do you have a locked safe? Let your loved ones know where it is and the combination. What about insurance? Use your letter to notify family members of any policies, policy numbers and whom to contact to make a claim. To ensure that your estate doesn’t end up intestate — a situation in which a court decides what to do with your assets because your heirs aren’t aware of your will — include the name of your accountants, attorneys or financial advisors and directions on where to find the latest version of your will.   In may case, I have designed a single person, who Evyn knows, as the one who has copies of ALL the important documents listed above so she only needs to make one call. 

Given Nicholas will always require a guardian, and he has an extensive medical, therapeutic and educational history I have created a file called "Care of Nicholas Jones" that details everything from preferences for their future custody and upbringing to medical history, current medications, caregivers, caseworkers. 

Finally, don’t forget to list your email and social media account passwords in your letter. This will make it easier for your family to tie up any loose ends and protect your identity after your death.

 Delivering your letter

Address the letter to one person – your spouse, a sibling, adult child or trusted friend, and leave it where it will be easy for them to find. For example, you may want to put your letter in an envelope with a name on it and place it in a bedside table or send it by email for them to keep. Remember, you are doing this out of an abundance of caution. Hopefully, your I Love You Letter will not be needed for many years. If that is the case, return to it at least once a year, perhaps around tax time when much of this information is already top of mind, to update account numbers, add new ones and get rid of accounts that are no longer active. An outdated letter may cause more confusion than no letter at all.

 A gift of clarity

For you, in the here and now, a letter provides the peace of mind that comes from knowing that you’ve covered all your bases and done everything in your power to establish stability rather than chaos in a situation in which otherwise you will be completely powerless. 

 For those who live on after you are gone, an I Love You Letter bestows the gift of clarity. And when your loved ones are forced to scramble to figure out the basics, there won’t be the sort of questions about finances and bequests that can sometimes, in moments of stress and emotion, boil over into arguments. There won’t be long, exhausting sessions sifting through drawers and boxes and under the bed for that single piece of paper with that one account number. There won’t be struggles to remember the foggy details of a long ago conversation about “What if…?”

 Instead, they’ll have more time to come to terms with their loss and begin the mourning process — fully understanding they can do so because of an act of foresight and love you undertook while there was still time.

Unspoken Words: When Shame brings Perspective & Renewed Gratitude

This autism journey never stops lifting me up. Once again, I unknowingly moved through my sadness to a place better than I had ever been before.

Shame:
In the 10 years since Nicky's diagnosis family and friends have lost loved ones, sisters, brothers, cousins, aunts, fathers, mothers, husbands, parents and even children. Hidden beneath my deep and genuine sadness for their loss, was a silent voice that felt they were better off than I was. As painful as their loss was, a part of me thought; at least it was over, they would recover, move on, get stronger, reach acceptance and go on to be happy again. On the other hand, I didn't see that for me.

My loss, the loss of my son's future, the loss of typical life expectations and joys that all parents expect to have as their children grow; revisit me over and over with every milestone, we so easily take for granted.  I thought, he's alive but we're not living the "normal" life we expected or he deserved. Everything from play-dates, dating, going to parties or college, getting his heart broken, going to the prom, fun memories of childhood, having "the talk", planning his marriage, becoming a grand parent,  are no longer experiences to anticipate they're only messengers of repeating grief.

Perspective:
This thought lived buried in the back of my mind as having some truth until Nicky had his first Grand Mal seizure, after which his little body laid totally still and I thought he was dead. In that inconceivable moment the choice between living with autism or NOT, didn't exist. I only wanted Nicky to be here. The notion that I would go on, get stronger, be happy again  was born out of grief not reality.  My family, friends who have lost a loved one are not better off, and I'm ashamed of my misguided conclusion. In my pain I lost touch with all I had to be grateful for, making it possible for me to compare my pain to a loss, I had not suffered!

Gratitude:
Nicky for all his challenges by the grace of God is here and I'm here. I get to see him every day. Clearly not seeing him - no matter what loses we suffer, what sacrifices we make, what crappy stuff living with autism may dish out one day after another - it would not be better. We have the possibility of tomorrow.

No, is not the life I expected, and I wonder who's life is?  There are challenges that I could have never imagined, and thats just "What is". So now with a renewed determination I thank God that he's here. I thank God for all the joy he brings to me and others. I thank God for the better person he is forcing me to become.  I thank God for giving me enough love to share,  and the strength to help my son. I thank God for every minute he let's us share and I intend to grab the most of them and I apologize for thinking I understood, when I did not.

Making Sense of Death

I don't think Nicky understand's death, I think he understands "gone".  His dad is alive, but he has not seen him for over 3 years and every week he says "No Dad. No Papa. No Father. One Mom. One Nicky".  The Polar Bear died 6 years ago and Nicky often says in a sad voice with a sad look on his face  "Polar Bear died, no Polar Bear". His Dad isn't dead, but he never see's him, the Polar Bear at the Zoo is dead, and he never see's him. So to Nicky I imagine they are both the same, they have the same end result. They are not here for him to see.  But I know the time will come when friends and family will pass away and I Nicky will miss them just like we all will, and I've wondered how I would handle it.  I read "Wrestling with Angels" today a mom's story and thought it was well worth passing along.

WRESTLING WIH ANGELS
by Liane Kupferberg Carter

“Do you miss your parents?” my 18-year-old son Mickey asked me last week.

“Yes,” I said.  “Every day.”

“Me too,” he said, and sighed.

His grandfather died three years ago.  In the past few years we have lost most of our elderly relatives, and Mickey asks about them too.  “Does Aunt Tessie  still love me?”  he will ask.  Like many children with autism, he is very literal.

We were supposed to have Sunday brunch with my father the day in July he died. Driving out to Long Island that morning, I telephoned repeatedly to say we were on our way, only to hear the answering machine pick up again and again.  By the time we tore into the parking lot I was frantic.  “You stay in the car with Mickey,” Marc said, racing into the lobby.  Minutes later, he reappeared and motioned me out of the car. “I called 911,” he told me, wrapping his arms around me as I struggled to stifle my cries.  Mickey flew from the car.

“Grandpa is dead?” he said.

We could hear the rising wail of sirens, saw a stroboscope of flashing red lights as cars and cruisers careened into the courtyard.  I drew Mickey tight and covered his ears.

Two days later, I clutched hands with Marc and my older son Jonathan as we buried my father.  Mickey was home with Milagros, the sitter who has loved and cared for him since he was an infant.  He had already seen too much. Friends and family followed us home for the ritual lunch. Baskets of bagels, bowls of hard-boiled eggs. Round objects, to symbolize the eternal circle of life. Mickey wandered solemnly from room to room, stopping in front of a group eating at the kitchen table.

“Are you here because you’re sad about my grandpa?” he asked.

Months later, as I  stowed away Mickey’s summer clothes, I noticed that he had taken all his photos of his grandfather and put them in the closet, facing the back wall. I returned them to his book shelf. A day later, they were back in his closet.  I asked him why he had put them there.

“No no no. No talking,” he said.

I understood. It is all I can do, some days, to look at those pictures myself.

*******
“Do people come back from heaven?” he asks repeatedly. Over and over, I tell him no.

“Do they come back from shopping?”

I say yes, of course.

“What about James’ parents?” he asks.

I know who he means. He’s talking about the book James and the Giant Peach.  On the first page, James’ parents go shopping in London, where they are eaten by an angry rhino, and James has to go live with his wicked aunts.  Is this why Mickey often waits up late at night when we go to dinner and a movie?

Sometimes he’ll look up at the sky and ask if Grandpa is up there.

“I don’t want him to be dead,” he’ll say. “Make him come back.”

“He can’t come back,” I say.

“But I want him to!” he cries.

Other times he asks for concrete details: “Who buried him? Is it with sand or dirt?”

*******

He plays Nintendo games endlessly, watching characters who “die”, only to be reborn in the next game level.  A high-tech version of Wile E. Coyote and Road Runner, forever chasing each other through an undulating landscape of cliffs and chasms.   Or he pores over my wedding album. The married pictures, he calls them. Pointing out all the relatives who’ve died, asking me to name them.  Inexplicably, he finds the name “Bernie” hilarious, repeating it to himself again and again for days.  When we drive by a cemetery, he will ask, “is that a cemetery?  Are strangers buried there?”  I think of Elizabeth Kubler-Ross’s Five Stages of Grief. They’re not unlike the stages you go through when your child is diagnosed with autism.  I’ve learned that grieving isn’t linear; I cycle through each stage again and again.  Just as Mickey is doing.  How can I explain death to him? I can’t explain it to myself. Often I wake in the dead of night, awash in a wave of nausea. How will he cope with my death? Who will love him when I am gone?

********

Mickey writes stories. He began doing this a few months before his grandfather died, when we took my increasingly frail father out to eat at Bruce’s Deli.  Waiting for food, Mickey busied himself by writing stories about his grandpa on the back of a paper place mat, filling every available bit of white space with inky words.  Now he writes stories whenever we go out to eat.  The stories are all the same.  Always about someone who has died.  In each one, a zoo animal escapes, invades that relative’s home and makes a big mess.  The animal breaks the computer, the dishwasher and TV. It eats everything in sight. Every story has a title: “Aunt Tessie and the Bison.” “Aunt Harriet and the Panther.” “Grandma and the Warthog.”  The stories don’t vary much. The syntax is off. He will only write them on a piece of paper torn from a small spiral notebook in my purse. And yet, these stories are powerful, filled with action and anger.  Most of them end along the lines of, “Aunt Tessie yelled get out you ugly mean bison. But that bison didn’t listen. That bison at Aunt Tessie’s house forever. The End.”  Sometimes he resolves them with: “Uncle Jack has to call 911.  The police arrest the monkey to put the monkey to jail. The End.”

*********

A year later, when we hold the unveiling, the Jewish tradition of honoring the deceased with a marker or headstone, we take Mickey with us to the cemetery, thinking that seeing the grave may answer some of his questions.  Surprisingly, he walks through the group of gathered relatives, shaking hands, happily greeting people by name. As social as a politician working a crowd.  Standing front and center by the grave, he eyes the unfamiliar rabbi. “Hi, I’m Mickey. Who are you? Are you helping us pray?”

**********
We are driving home after getting Mickey a flu shot when he asks suddenly, “Who buried Martin Luther King?”

I say, the people who work in the cemetery.

“Can God make people alive again?”

I say no.

“But he has to!” Mickey says, now angry.

“People’s bodies die. But we still love them, and think about them, and talk about them. Our thoughts and feelings about them will always be in our heads and hearts,” I say.

“My family is in my heart?” he says.

“Yes.”

He thinks a moment. “Are they buried in my stomach?” he asks.
###

He stacks his stories in a cubby hole in his desk. “Sit with me, Mom,” he says one afternoon, and I perch on the bed beside him.  He wants to nap, so I cover him with a quilt. “Mom,” he says. “You’re being like a flight attendant.”

I smile.  “I’m right here,” I say.

“Mom?”  he says.  “When are my cats going to die?”

“Not for a very long time,” I say.

Then one day, at City Limits Diner, he looks up from the story he is writing and says, “Are people in stories alive?”

“Not exactly,” I say. “People who have died stay dead.  But it’s very good to write about them.”

“Will they come back?”

“No,” I say.

And then he smiles radiantly. “But they’re alive in my stories!” he says.

“Yes,” I say, and give him a hug. “Yes.  Absolutely.  They are.”