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How did you tell your children about your MS

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    How did you tell your children about your MS

    Hello, everyone I'm a 34 yo full time worker, full time mom to 4 children, and wife to the most amazing husband. I began my MS journey with a Dx of Optic Neuritis 9 months ago. I didn't believe I had MS at the time, and I was told I had CIS. After my vision came back I was confident that although I wasn't taking any DMD, I wouldn't experience another exacerbation.... boy was I wrong. My children knew I was having an issue with my eye, but didn't know the extent of it, and I never mentioned anything about MS to them at that time.

    I now have moved from CIS, to definite MS. I know I need to communicate this to our children ranging in age from 6 -11, but I'm at a loss at to HOW I do this. I don't want them to become fearful or worried, and I'm wondering how other families have communicated this and what the response was from their children.

    Any help is appreciated. TIA!
    Optic Neuritis -- 5/2013
    Dx MS -- 2/25/2014

    Fearless with MS

    #2
    Hi Hannah! My kids were much older than yours when I broke the news to them, but regardless, there will be a lot of questions. Of course, what we want to explain to them needs to be age appropriate.

    The NMSS has a publication called Keep S'mylein and here is a pdf copy that talks about smptoms- you could print 4 copies out for each of them if you wanted! It is very age appropriate! http://main.nationalmssociety.org/KS...be/Issue-3.pdf

    Here is another publication where kids talk about MS
    http://www.nationalmssociety.org/Nat...k-About-MS.pdf

    There are many of these publications available. You could always call the NMSS and ask about them 1-800-344-4867.

    I think the best advice to give them is that Mom is still going to be OK and will you will still be able to take care of them no matter what. Sounds like you have a great family and husband to support you.

    Good luck and take care
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      My kids were older but I remember a little book from the MS Society's newly diagnosed series called "My Mommy has MS". It compared MS to when Grandma phones (sometimes Mommy answers right away, sometimes it takes her a while and sometimes doesn't answe at all).

      I'm not doing this book any justice but if my kids were younger I would have definitely used it. it doesn't have anything scary in it nor does it have too much info.

      Please let us know how it goes!

      Jen
      RRMS 2005, Copaxone since 2007
      "I hope to be the person my dog thinks I am."

      Comment


        #4
        Honesty

        Hannah,
        I was diagnosed in August 2013. My kids are 13 & 10. It is important to me that we are completely honest with them. It was rough in the beginning. They both went through periods where they thought I was dying etc. That is when my husband and I decided to be honest with them and allowed them to ask any questions. I told them if I didn't know the answers I would ask my doctor. In which I did. I found the fear of the unknown was what bugging them the most. We take it one day at a time but we don't hide anything.

        Comment


          #5
          thanks for the awesome support!

          We were going to wait until my appointment with my neuro, however, Because I was on IV Steroid therapy, a nurse was coming to our house, and I didn't want the children to wonder or be scared. We decided to tell them the day before she came. I will say, I prayed before I opened my mouth, and that's probably the only strength I had to NOT cry when they children showed visible signs of concern.

          Basically I asked them if they ever felt sick before but maybe they physically didn't LOOK sick. They understood this, and one answered, "probably when I have a headache or when my throat is sore." I explained to them that's kind of what's happening in mommy, and began explaining in Kid terms, thanks to the Keep S'myelin publication.

          My youngest just wanted to cry and not share much of his feelings, and it broke my heart, but after cuddling and snuggling and me sharing how I first felt when I found out, he opened up. They have definitely been awesome since then, helping with chores, wanting to help when my IV is hooked up, and keeping quiet if I'm napping.

          On a side note, I refuse to let this disease instill fear into my family. Thanks to the awesome support both here and through the NMSS, there's no place for that. Thanks again, everyone!
          Optic Neuritis -- 5/2013
          Dx MS -- 2/25/2014

          Fearless with MS

          Comment


            #6
            Originally posted by Hannah Brintnall View Post
            Hello, everyone
            I now have moved from CIS, to definite MS. I know I need to communicate this to our children ranging in age from 6 -11, but I'm at a loss at to HOW I do this. I don't want them to become fearful or worried, and I'm wondering how other families have communicated this and what the response was from their children.
            Any help is appreciated. TIA!
            Hello Hannah,

            Sorry you're in this position of having to tell your children about your MS. Others have given you some very good suggestions.

            I was dx'd last year and haven't told my three young adult children: 24, 22 & 19. I keep putting it off for one reason or another and will most likely disclose sometime this year.

            Your children are young, and although it hurts to have to tell them, they are young enough to just give the essentials. If questions are asked, you can give age appropriate answers. Also, they will see that you can function, albeit some days may not be your best normal, but you're still there for them.

            It's hard -- I wish you all the best.

            Bree

            Comment


              #7
              Hello Hannah,
              I'm so glad that our members have reached out to you with information about resources that may help and to offer their support.

              I just wanted to add one more into the mix - this is probably for younger children, but is offered by MSAA. It's called "Mommy's Story" (they also have Daddy's Story). You can either order the booklet for free or download it.
              http://mymsaa.org/publications/mommys-story/

              I've seen the booklet, it is really good. Hugs

              Good luck with your journey through all of this.

              Comment


                #8
                I'm so sorry you have to deal with this, Hannah.

                My kids are 4 and 1 and to them I've always had MS. How I deal with it to be open and frank, say everything with a smile, and never let them see me cry.

                Good luck and hugs.
                Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

                Comment


                  #9
                  smiles

                  that's what ive been doing too girl! keep on going and smiling it gets better I promise.. now I am off to look at my work at home boards I'm getting more depressed reading about everyones ms because sometimes I tell myself I don't even have it lol isn't that crazy I just wanna be healed.
                  peace out
                  aj butterflygirl

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