Out of the Mouth of Lucy

Multiple Sclerosis investigated by a six year old


Lucy is my cousin and she is six.  Technically, she is my great, great cousin.  And, as she is a great, great kid, that would be great except that two greats simply means that I am aging, greatly.

(MS friends-if you were able to follow that great logic then today is an excellent day to redo your neurological-psych evaluation.)

Every summer Lucy, her mom, her big sister and her little brother come to visit me.  Is it because they think I am great?  Maybe a little but mostly I think it is because I live near a great beach.

We always have a blast during this visit but I think out of all of us, Lucy looks forward to it the most.

When her mom read aloud from Facebook last year that I was going to have to move, Lucy panicked about where I would move to and if there would still be enough room for them to visit.  She was thrilled to know that my new place had plenty of room.

As the summer gets closer, she starts talking about me and the visit more.

She is very smart and when my book came out she had two important questions-is the monster on the cover supposed to be MS and is the girl carrying the monster on a string supposed to be me?


Yes, and yes my dear Lucy.   This knowledge caused her to happily proclaim to her teacher on the last day of school that she was going to the Cape to visit her cousin Yvonne who wrote a book about a monster.

I was so excited when my cousins arrived and we all promptly exchanged big hugs.  Lucy’s little brother is a runner and he immediately took off while his mom was unloading the car.  I tried to chase him but quickly gave up.  Luckily, Lucy’s older sister is an Olympic speed runner- she has to be to help her mom catch her brother.

Lucy noticed this and informed me that, “Yvonne, you have to be really, really fast to catch my brother.”

I replied, “But Lucy, I’m old.”

She made me feel better when she responded “and you have MS.  Maybe that makes you so slow.”

Later Miss Lucy wanted to know, “Yvonne do you take medicine for your MS?  Sometimes I have to take medicine for my allergies.”

I didn’t want to give her nightmares so I kept my shots hidden.  After all, they still really terrify me!

Lucy’s real name is Lucia which actually means light.  That is fitting as it completely floors me how bright Lucy is.

She isn’t afraid to exert her intelligence either.  We were playing a writing game and she informed me that, “Yvonne, you don’t know how to write.”


Either my e’s looked like g’s or Lucy has been talking to my editor…

When I asked her yet again what grade she was going into in the fall she told me first grade and then said, “Yvonne you keep asking me that and asking me that.  You asked me today and you asked me yesterday and you asked me the other day. How come you keep asking me?  Is it because of MS that you can’t remember?”

I said yes, that was why I kept asking her the same question over and over and maybe it was true but it was also because I couldn’t believe she was only going into first grade.  I don’t think I knew anything when I was going into first grade.   Did I even know my name?

On our visit we found a man dressed as a soldier, pretending to be a statue.  He made money as he stands so still that people think he really is a statue and then they are so surprised when he’s not, they give him a dollar or two.  Lucy and I decided that this would be an easy way to make extra cash and so we practiced.


Turns out, Lucy was very good at this and could probably pay off college by the third grade if her parents want to let her start her career path early.  She would pick a pose and then we would both have to keep it for as long as possible.

She always outlasted me.  But she is a considerate child, stating after one pose, “Let’s not do this one.  It’s not fair as I take ballet but it is too hard for you as you have MS.”

And Lucy was my ally.  When her brother refused to eat the dinner I prepared she told him that he should try it as it was delicious.  “You know, even if something looks disgusting it can still taste good.” Her brother wasn’t convinced and opted for waffles instead but I was pleased.

When after dinner her brother spilled his glass of water, Lucy asked me if I ever yelled.  I had to think about that one and realized that no, I don’t yell.  I sure curse a lot but never over spilled water.  Spilled water is easy.

Spilled milk though?  I wouldn’t cry about it but I just might utter a profanity or two.


Of course, I didn’t tell Lucy that…

I miss having kids around.   Their questions are so spot on.

How refreshing would it be if the rest of the world looked at those of us with chronic illness and just asked what they wanted to know, without judgment or prejudice or ulterior motives?

How awesome would it be if people just asked their questions without worrying if their questions were insulting or dumb?

Even better, what if those asking the questions listened to the answers, really listened, like Lucy did?

Yes, I appreciated Lucy’s questions and concern.  And I enjoyed putting her concerns to rest.


Like the great concern she expressed when they were getting ready to leave, “Yvonne, I am worried about leaving you alone because you have MS and you don’t have a husband.”

Where did that one come from?  Was it because we were talking about all of them going home to see their daddy who stayed behind to pet sit and do work around the house?

I assured her that I would miss her too and all of her help.  I reminded her that she met my mom who lived close by and that I have a lot of friends.

This seemed to make her feel better.

But me, I couldn’t help thinking maybe a husband would be helpful….

And, man, that Lucy is some smart.   What grade is she going into????



14 thoughts on “Out of the Mouth of Lucy

  1. Which explains why Jesus said, “…unless you change and become like little children, you will never enter the kingdom of heaven.” I’ve probably learned more from my children than they picked up from me.

    You go, Lucy!

  2. Oh she sounds adorable….. Well You know me I am never afraid to ask a dumb question, but then again as several of my facebook friends are kids that my girls are friends with maybe i am not as grown up as most… Of course I admit that I don’t always act my age either 😀 ….. Somehow you have managed to stay my friend since like forever and I am very glad that you are in my life… Of course reading your article made me think I have NEVER seen you yell or even raise your voice, damn girl how do you stay do mellow?…. I know that I was the “wild child” of our group and could come out with one liners in a snap, but I was always loud no matter if i was laughing, throwing out a comeback or just calling out HEY CUTE NEIGHBOR… How the hell have you put up with me all these years?

    • That’s silly talk. You are and have always been my bestie from like forever! And, without you, where would I get all of my humiliating stories????

  3. I’m new to your blog. A great friend sent me your book. My Dad had just died and she wanted to pick me up. Well, your book sealed the deal. I love it! I was diagnosed with MS about a year ago at the ripe old age of 62. Biggest symptom was that I felt as old & feeble as my 94-yr-old mom.
    I watch my 3-yr-old great niece on Tuesday mornings – kiddos are a joy! Sounds like your Lucy is a sweetheart! I’ll be following you and our fellow MSers. Thanks for being there!

    • Hi Audrey! Audrey is my sister’s name. She was named after the cartoon character Little Audrey- were you? My deepest condolences on the loss of your father. I’m so glad though that my book helped you during such a difficult time. It means so much to me that you shared that and I hope that you are feeling better and doing great! Thank you too for checking out the blog and I hope you will keep visiting. May giggles help you as much as they have helped me! And I bet you get a lot of giggles with your great niece. I have two great nephews ages 2 and 3 but they live far away and I only get to see them once a year. But I swear visits with kids help keep us young. And yes, Lucy is a sweetheart!

  4. I read in your book about your sister, Audrey. Not a common name! Didn’t like it as a kid, but now I like the uniqueness (is that a word). I wasn’t named for the cartoon Little Audrey, but my dad said it was for a neighborhood girl has thought was nice. Only found that out in the last year. That is an example of why I’m so glad I spent a lot of time with him before his death. He had dementia which seemed to affect remembering 2 seconds ago, but 80 years ago he remembered with clarity.

    I was wondering if you’ve ever blogged about explaining MS to older people. Dad didn’t get it and my mom, who is 95, says things like “I never thought my daughter & I would both use a cane at the same time” or “you can’t get up the steps, I can! Thanks, Mom!


    • Hi Audrey- Your dad sounds like he was a wonderful man- so glad you have such precious memories… I haven’t thought of that for a blog idea but it is a good one. I haven’t had much experience explaining MS to older people as when I was diagnosed my sister- not Audrey- had already been diagnosed a few years prior and so my mom had a good understanding of it. Plus, my mom refuses to admit that she’s “older,” even that she’s older than me. I do explain the very basics of MS when I do my talks but I never thought about putting it in a blog. Let me ponder that a bit…. Hope all is well with you.

  5. Humiliating stories eh I just like to think of them as funny adventures that we had…. But I do have to say the night we knew you had company over and we kept prank calling you and you kept picking up the phone has got to be one of my favorites I mean we were all laughing so hard tears were rolling down our faces.. and I was like why is she answering the phone at the time I am sure you were ready to kill me as we all know it was Most likely my idea.

    • It WAS your idea and my date said the same thing. “You know it’s your friends just bugging you so why do you keep answering?” Not my smartest moment…

  6. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Arm Crutches

    Keep Posting:)

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