Telling the Children

Jed writes that his two young children lose patience with his physical inability to keep up with them, specifically their speed going through toys in the basement.   Kids are wonderfully unaware of our struggles.  I think we have to do all we can to keep it that way, to preserve their childhoods for as long as possible.  They should live carefree and play their hearts out.

That raises the question, when and what do we tell them about a sick parent?  Ask five shrinks and you will get six answers.  There are no pat answers, no roadmaps for sale at your local gas station.  I think parents intuitively know when it is time to talk.

For us, the moment arrived when the kids saw me fall down the stairs and land on my head.  Ben, our oldest, waited until he was in bed with the lights out to ask blunt questions.  That was the moment of truth that shook hard truths from the tree.  Ben was only five, so this moment came more than twenty years ago.

We decided that this had to be the start of an era of openness.  We quickly came to believe that the only way to make children secure in their own homes was to open lines of communication and simply tell the truth.  There would be no drama, no grim faces.  We all know that kids are the smartest ones in the house.  They can smell trouble.

When cancer showed up at my door, we just sat them down and told them the facts.

Gabe, our middle guy, asked two questions.  Are you going to die?  Do we still get our Christmas and Hanukah presents?  He had his priorities straight.  We had showed calm.  Kids take their cues from parents.  They saw that we were not freaked out and adopted the same attitude.  We had not presented the situation as nothing to worry about, but let them know we thought everything would be okay.

Our children are grown and gone now, living in various places in the world.  We give them the news when there is a health issue or anything else.  When the three of them are home for a visit, together or one at a time, they watch out for me when we do anything outdoors.  It has become second nature.  I would like to think they see others in need of assistance, on the street or in other public places.  Helping an elderly person cross the street should be automatic.

So, Jed, give it time.  Then teach.



16 Responses to Telling the Children

  1. Nancy Cincotta May 29, 2014 at 12:14 pm #

    I have been dealing with this for many years. The first time I got breast cancer my son was 8 and my daughter was a mere 5. Breast cancer recently returned and having to tell them was heartbreaking. My son is 22 and my daughter is 19 it is never easy but they needed to know first. They have grown up with many health issues to deal with, cancer and ms. I have always been open and honest with them while never letting these issues restrict their growth. Not easy.

    • Richard M. Cohen May 29, 2014 at 3:30 pm #


      Not easy. Never easy. But you did the right thing. They would tell youj that.


  2. Yvonne May 29, 2014 at 3:13 pm #

    My dilemma now is how much to share with family and friends. Their intentions are good but the questions are always around concerns for me living alone. I love my independence from “eyeballs”. Yes, I forget sometimes and make sudden moves that cause me to lose my balance even occasionally fall. I learn with each stumble what my new limitations are as this disease progresses to a whole new level after 30 yrs. But “eyeballs” would make me more aware of my limitations and sharing would probably cause me to shrink from challenges. So they are always surprised when I visit because we talk all the time but only about the things I am doing, not about the things I can no longer do. So deciding how much to share so they won’t be shocked when I get off the plane is one more thing I have to learn how to balance.

    • Richard M. Cohen May 29, 2014 at 3:33 pm #

      Nobody can help you with that. You know best.

      Good luck to you.


  3. Mike Jortner May 29, 2014 at 3:16 pm #

    Great post. My daughter was born in 2006, she only knows “this” me. She is an only child so she has grown up in a house with only adults. Even though I act like a child the number next to my birthday is 1975. Her mother is the Martin and I am the Lewis. We got lucky because she understands things well beyond her 8 years. I also have a younger brother with Down Syndrome. Somehow she intuitively became empathetic. She treats everybody the same, because that’s how she see’s everyone. I would love to say I taught her this skill, but it was always just there. In her genetic code. She asks questions about various treatments or what the future will hold. I answer the ones that I can honestly. When I don’t know I will say, “ask your mother”. She was 4 or 5 when she asked “will I get MS?”. That was a tough one to answer. It’s possible but I didn’t say that. My mother has it and my wife’s paternal grandfather had it. So it’s in there somewhere. I know according to the handout it’s not hereditary, however that is easy to debate. She participates in the “Walk” every year. She writes a letter and asks for donations because as she writes “I hate MS but I love my dad”. I don’t know how our family dynamic came to be. But our family is unique and certainly dynamic!

    • Richard M. Cohen May 29, 2014 at 3:38 pm #


      That is a tough one. My father and his mother had MS. I know the fears, and I know they are somewhere in my children’s heads. Life is scary. No way around that.


  4. Amy Corcoran-Hunt May 29, 2014 at 3:38 pm #

    Great post.

    We have a two-year-old. It’s funny, she knows to ask strong, walking Mummy for some things. And asks me for other things. I’m her #1 book reader. When she wants me to follow her, she says “come!” and pats my wheelchair seat, she knows that’s how I’ll leave the sofa and follow her.

    The toddler is nonplussed by the whole thing. One of the Momzes operates differently, that’s all. We’ll see what happens as she grows up. I’m a big fan of honesty. And I bet she’ll just say “duh.” This is all she’s ever known of me. Which probably does mean I have it easy.

    • Richard M. Cohen May 29, 2014 at 3:48 pm #

      Nobody has it easy, but it sounds as if you will be fine.


  5. Aaron Fischman May 29, 2014 at 4:38 pm #

    I was diagnosed before my first child was born and my wife and I did not know how to tell her. We had dinner with a friend who’s father has MS and we asked her – “when you were a kid and knew then what you know now about you father’s MS how would you have wanted him to deal with telling you?” She said that there were 2 important rules 1) never go somewhere where your kids will have to help you and 2) never hide. The more open you are there is less for them to fear. Our daughter is now 15 and we think that MS is part of her life but does not have a controlling interest

    • Richard M. Cohen May 29, 2014 at 8:54 pm #

      You nailed it.


  6. Steve May 30, 2014 at 6:53 am #

    When I was first diagnosed my grandson was 4 years old. One day we were walking across the yard and I as lagging behind him trying to keep up. He asked me when I was going to get my walk fixed. I told him that it was not going get better and maybe worse. He answered that’s ok I will just walk slower for you. As he has gotten older he takes everything in stride helping me when he can. Puts things in prospective.

    • Richard M. Cohen May 30, 2014 at 7:10 am #

      That’s what it is all about.


  7. Geof May 30, 2014 at 11:11 am #

    We found it easier to always tell the kids, but our family is made up of medical conditions.

    While I was waiting for a diagnosis, it was dealing with my now adopted daughter on a weekend without my wife when I learned we could weather most things together. I woke up with a splitting headache to find the world decidedly blurry which is a problem when I need to draw up medicines for her heart condition. When it was finally time for her to get up, I still couldn’t see well enough to read the marks on the syringe. I resigned myself to taking her, the meds and syringe next door for help. As I carried her down the stairs, she put her arms around me, and in doing so, one of her arms covered an eye. Viola! I could see. I quickly realized both eyes were fine. They just were not going to play nicely. It was that simple hug which taught me we could survive better together. I first started on Copaxone with my diagnosis, and I made a point of doing the injections in front of her so she could see and not fear needles. As a heart patient, she has had so many sticks. When it comes to taking meds or going through procedures, I know of nobody as tough as her.

    We have always been up front with whether a medicine will be yucky or a procedure painful. We maintain the same up front attitude with them about our own medical issues which I think has helped them accept their own medical journeys. Believe it or not, our biggest issues with our family and medicine come from the unfairness of “how come he doesn’t have to take as many meds as I do?” The acceptance of our conditions is just assumed whether it is my head aches or K’s blindness or A’s heart/bowel issues. At this point, it is the only life they have ever known.

    • Richard M. Cohen May 31, 2014 at 7:45 am #


      Have you found illness to be a bonding agent with your daughter? Life is unfair. Most of us have figured that out. But it sounds as if you are able to make somewhat of a positive out of a negative. Worth treasuring.


      • Geof June 2, 2014 at 10:23 am #

        It has been a wonderful bonding agent for our entire family. We teach that every one has something with which they will struggle. Some of ours are up front in your face types of issues, but not all of them. Everyone we meet will probably be dealing with some thing which seems difficult for them just as we struggle. Some times it may seem silly to them when one of their friends talks about what they fear because their family has never known any other way of life. Like wise, some of the things we struggle with are taken for granted in other families, like being able to poop or take off a shirt.

        We struggle and bond in knowing our struggles are not shared with, nor understood by, every one. We’re lucky in our struggles, and I do not know any other way to teach them to deal with life.

  8. MB May 31, 2014 at 10:35 am #

    This post and the follow-up comments added to my MS Angst. I wish I had half the resolve of your followers.

    I shield my children (now 22 and 23) from most MS-BS because I don’t want them to worry about me. It would break my heart if I broke theirs. This probably isn’t good for any of us but I can’t even start to talk about it with anyone, really, for fear of sobbing uncontrollably. At least for now, it’s better for me to say “I’m fine,” and carry on.