[legzzalot]

OK, so my body is failing me, and my spinal cord is swollen. The anti-inflammatories are not working and the doc has ordered me not to lift anything over 20 lbs and we start steroids next week to try to alleviate the swelling and hopefully help with the pressure. This is all fine and good in theory except....

I have a 4 yr old who likes to swing from me like a monkey. I made the mistake of trying to carry her out to the car the other day (she was half asleep) when my legs decided to stop working and I almost dropped the poor kid. She doesn't get that I can't really pick her up any more and the hop on mom game just isn't as much fun as it used to be.

So now I am to the point that I have to tell her why because her feelings are hurt that I won't play with her like I used to. I don't want to tell her that I am sick, because really, I'm not sick I'm just in excruciating pain. And she is a very sensitive child who at 4 yrs old does not need to know every detail, but I am not sure what to tell her right now.

I know there are a lot of parents on here so any advice would be welcome.

[AfterMyNap]

I'm not a parent, Legz, but I'm pretty good at communication with the chronologically disadvantaged.

She's old enough to understand change but young enough to accept distraction. Give her new play opportunities with just the two of you, things you can do without having to over exert yourself. She doesn't need to know anything but that you still want to play with her. Trust me, they're young, but never dumb.

[CayoKay]

evenin' Leggz.

when my kids were that young, my symptoms were visual (partial blindness from optic neuritis) and horrible headaches...

my sons (aged 4 and 5 at the time) had fun decorating my pirate patches with felt-tip markers and glitter,

I tried to make it a "project" for them, finding ways they could "help" like closing the blinds so the light wouldn't bother mommy, fetching things, and helping guide me around the house.

it made them feel more grown up and mature to be my little men for a few months.

the next flare wasn't for another two years, and they were old enough by then to understand that mommy was really sick (they could see my legs buckle, and sometimes even collapse.)

by then, the family joke was that there was nothing wrong with my legs, it was "The HOLES in Mommy's Head"

by the time the next flare rolled around, they were going door to door collecting pledges for the MS WALK, and organizing their classmates into a walking team, and their teachers and friends' parents all helped staff the rest stops and the finish line.

by then, with me giving little explanations all along (and being careful to avoid frightening them, or leaning on them for support, or giving them too much information) they were experts in explaining MS with one or two sentences ("My mom's T-cells have gone bonkers, and are chewing little holes in her head..." and "MS is like little RAMBOs, running amok, and shooting holes in the insulation on mom's brain wiring.")

by the time I couldn't pick them up any more, they were too old to be picked up, but the main thing is don't let your worry show on your face, be calm and reassuring... at age 4, all she needs to know is that your back is very sore, and mom's not a jungle gym at the moment.

big ol' huge hugs for you Leggz, and a hug for your daughter too...

treat it like you would sex education, give 'em only what they need to know, in an age-appropriate fashion...

and ask your local MS Society for loaner books on kids of parents with MS...

here's some books we found to be helpful:

Coping When a Parent Has Multiple Sclerosis - by Barbara Cristall. New York: Rosen Publishing, 1992. 145 pages, $13.50. Not available in bookstores. To order, call 1-800-237-9932.

http://findarticles.com/p/articles/m...11/ai_14276049

and an online book:

Someone You Know Has MS: A Book for Families

This online book is aimed at families with pre-teen children, where a parent has Multiple Sclerosis, produced by the US National Multiple Sclerosis Society, available in PDF format here:

http://www.nationalmssociety.org/mul...ers/index.aspx

more online stuff:

Web Resources For Children, Teens & Parents

Included on this page are various links to information aimed at children and teenagers with a parent affected by Multiple Sclerosis. As well as information for a parent who needs to explain their Multiple Sclerosis to a child or teenager.

http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=1077

[legzzalot]

Thank you so much for the information! And for everyone's support. I really appreciate it.

[4boysmom]

CayoKay,
What an excellent response! That is exactly how I would have handled it. Kids are smart, and they'll understand.

I think the key is how "You" think about MS. If you find it scary, frightening, horrible,blah, blah, blah, that will carry over and worry your child.

But if you take it all in stride, then it will be easier for her.

Having said that, excruciating pain is difficult to take in stride! So play a game of chutes and ladders, or something fun on the computer, and get rid of the jungle gym mom game!

All great suggestions. You guys are so smart!

[CayoKay]

Originally Posted by legzzalot

She doesn't get that I can't really pick her up any more and the hop on mom game just isn't as much fun as it used to be.

lol, Legzz.

we had what we called "DON'T Glom on Mom" days.

in honor of Dr. Seuss's beginner book HOP on POP, from 1963.

we'd sit, and read stories, and they'd change a line or two, and giggle over their attempts at making the rhymes work:

http://www.dooyoo.co.uk/printed-book...seuss/1017522/

HOP POP
We like to hop.
We like to hop
on top of Pop.

STOP
You must not
hop on Pop.

naturally became:

Glom, Mom
We like to glom
We like to glom
On top of MOM!

BE CALM !!
You must not
Glom on MOM !!

and my pre-teen daughter contributed by saying that my sons must

Have Aplomb!
Cease & Desist
That Glom on Mom!

* * *

oh, and thanks, 4boysmom!

I've had MS for (lemme think...) um, it'll be 21 years next February.

my kids came out (mostly) well-adjusted, and are all working or in college now.

[Gazelle]

Cayo, I really like your kids too.

Legzz, you'll be fine. Telling your kids all they can handle without making it too "scary" isn't that horrible. And they do adapt. Both my grandkids did and really well.

[braingonebad]

Originally Posted by AfterMyNap

I'm not a parent, Legz, but I'm pretty good at communication with the chronologically disadvantaged.

She's old enough to understand change but young enough to accept distraction. Give her new play opportunities with just the two of you, things you can do without having to over exert yourself. She doesn't need to know anything but that you still want to play with her. Trust me, they're young, but never dumb.

I think you understand little kids so well because you still are one at heart. I'm not joking around, that's a compliment.


My kids were older than yours, Legzz, when I started to get sick. I started by telling them I was gonna die and they weren't gonna catch it. They haven't really asked for further details yet...



I have a 2.5 yr old granddaughter now though, and she wants to monkey-hang from me and get me to play in ways I just can't physically accomodate. I simply tell her "Sorry, Granny's too old and she'll break. You wanna shake me and see if you can hear me rattle?"

She thinks that's funny.

We manage to find a zillion things to do, ways to play. We fill our time together no problem.

She loves to be treated like a big girl and asked for help. She's awesome at folding wash cloths and using a swiffer duster and she has her own pint-sized broom. We let Daddy do the monkey hanging and other heavy stuff.

Cayo - thought you'd get a chuckle out of this. I was walking in to a store and a woman with a little boy (about 4yrs) were walking out. The woman was gently saying to the boy, "Some people who wear eye patches really have an eye that's hurt. Most of them are really NOT pirates."

[Gazelle]

LOL Brain, about the pirates. I had a good laugh on a listserv post that came across about a guy who had to wear an eyepatch because of double vision. The discussion was about Social Security disability. They were talking about vocational experts and jobs in the national economy that this guy might be able to do. Someone on the list suggested Pirates. Others chimed in and asked how many jobs were available for pirate in the national economy.... (ok, maybe you had to be there but it WAS funny)

[braingonebad]

Interviewer No. 1: Sure he has the eye patch, but can he handle the *hook*?

Interviewer No. 2: Show him your hook skills, Mr. Smith.

Interviewer No. 1: Hey, not bad! Can he Argggghhh?