Teaching My Child About My MS: The Madeline Files

  • When Madeline was born, I had been living with Multiple Sclerosis for 13 years, and on that very day I started planning what would be our first conversation about MS. Ok, maybe not that day. But worrying about that conversation was a big part of my “first time mommy-how am I ever going to do this baby thing” anxiety package. So I learned the basics, the one’s that all first time parents need to know and are forced to figure out!


    You know... the holding, the changing, the nursing, the sling-ing, the bouncing, the soothing, the “sleeping” and that car seat that we couldn’t figure out-ing.

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    These are the scenarios that humble us at a time when we thought we already knew how to do this “life” thing. With our new baby, we were reduced to preschoolers with their mittens clipped on their coat sleeves. And even though our learning curve kept us very distracted, I couldn’t ignore my fears of how this disease would impact my mom-abilities and how it would ultimately make Madeline feel. I needed to start prepping her for my unknown future as soon as possible!


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    I knew from my experience as a career-therapist (the one on the couch, not the one taking notes!) that understanding is not enough. It’s the talking, and the talking and the talking that makes the difference in how feelings are processed. (I’m sure it’s no surprise that I’m very good at talking and talking and...) But I knew how this stuff worked and that I would have to wait until she could talk. Sigh. This was taking forever!


    I waited patiently (and by patiently, I mean anxiously!) until she could talk. And then I waited (patiently) until she could put words into sentences - and by sentences I mean three words. And then I waited (patiently) for her to use sentences more complex than “Elmo loves you.” And when this finally happened, I rushed to the stage.


    When she was five, I spread out my MRIs on the table waiting for her to ask about them. Nothing.


    At 6, I paused the School House Rock: Central Nervous System episode that she was watching - a great way to teach kids about MS, by the way - and she said “Hit play, Mommy.”

    At 7, she went to an ice-skating party and told me that she wishes she could be a doctor with a magic wand to cure everyone with MS so they could go ice-skating with their daughters.


    Wait. Rewind.


    I couldn’t believe it. I was so preoccupied with starting this monumental conversation that I forgot to back-up and notice Madeline was learning about MS. She’d been living with it her entire life. Every day she is learning more and more about MS; it’s an automatic work in progress. And so I pay closer attention to her experience and make every effort keep that conversation going.


    With every intellectual growth spurt, (a weekly occurrence these days) she has greater understanding of what MS means in her world and so she needs different types of information at different times. I have learned that she only needs to know as much as she wants to know at that moment. She’s my teacher here - she creates the lesson and I follow along, ready to raise my hand when I know the answer and ace those pop quizzes.

  • • • •

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    Last week when I went in to read to her, I overshot the chair. As I got up and saw the look of fear pass over her face, I tried to recover quickly. Not a second passed and she told me that she was too afraid to go to sleep with the proverbial “monster-under-the-bed.” Of course it wasn’t hard to put two-and-two together to understand that this monster has a clinical name and isn’t imaginary.


    Later I peeked into her room to see if she had fallen asleep and she popped up and said, “The thing is Mommy, I’m scared you’re going to die.” So I gave her a hug and reminded her that everyone dies and that I will too, but only after living a very full life.


    I kiss her goodnight, take one last look and smile to myself knowing that we are both learning how to do this life thing. And we will always make time for each other to express those deeply felt emotions.

Published On: November 10, 2011