Explaining MS to the kiddos

[rocky282]

Hi ladies, I have 3 kids who are 4, 3, and the last will be 2 in October. I am having troubling understanding how to explain my MS to them. When I am very tired and feeling like cuck, I lay on the couch so that I can still be with them. They are really good kids because when I tell them that mommy is sick they bring me pillows and blankets and curl up with me on the couch. Lately though all I can do is lay on the couch with maybe 2 days a week where I feel like getting up. How do I explain to such tiny ones that mommy is really sick and may not get better? Any recomendations will be greatly appriciated.

Oh my hubby is a disabled VET retired from the Army in March of this year. He isn't to much better than me, but is not getting the exhaustion that I have, just his inability to walk easily. Between the two of us the kids spend a lot of time playing in the house.

[corso1102]

My daughter saw an episode of "Law and Order" where a woman had MS to the point she was quadrapeligic (did I spell that right) and she became highly upset. It is extremely hard to explain to the little ones, but you seem to have kids that love you and react accordingly...no explanation necessary at this time.

[SNOOPY]

Hello rocky282,

The National Multiple Sclerosis Society has Keep S'Myelin which can helpful in explaining MS.

Here is the URL for S'Myelin:
http://www.nationalmssociety.org/mul...lin/index.aspx

[rocky282]

THank you Ladies!

I will try the suggestion snoopy. I love my kids very much, but they are certainly a handful. I do want them to grow up understanding what's going on, so they can be prepared, and not blindsided if/when I get worse.

[spuffy]

Older kids

My husband insisted we tell the kids (young teens) right after the dx. (RLRM at this point). It was weird. They cried a bit and then forgot about it. Really. I mean, they just sort of accepted, "That's mom," like the numb legs and the insistence they do homework all went together-- just mom stuff.

But years, later, one son got involved with a girl with another autoimmune disorder (not MS), and I did wonder if he was more open to that because of me. The girl and I have great discussions about the value of steroid etc, LOL.

Anyway, I think kids kind of accept anything as normal. I remember when I was little, a friend's mother was in an iron lung (she'd had polio), and we all just kind of went with it. Okay, so Tommy's mom was in an iron lung. (For you youngsters, that's a body-sized metal tube that used to help polio victims breathe.) No one is as accepting as kids. Whatever they live with, that's normal.

[cosake]

I completely agree with Spuffy - whatever life you (your kids) live is what becomes your "normal". Just like me doing my beta shots at the kitchen table - that is part of the "normal" in my kids' lives now. I don't make a big deal about it and neither do they.

I am fortunate to have mild symptoms most of the time, but do have bad days where I end up on the couch or in bed. I let them know I'm not feeling well and they are usually helpful to me. Other days when I'm still active but feel like crap they have a hard time understanding because I look OK. (My boys are 14 and almost 12, so older than yours.)

Just don't shy away from any questions they may have and if you don't know the answer to something, find out and let them know.

Good luck.

[Cmiracle]

Funny that I read this, just today my 7 year old asked me why I park in the handicap spot, when I am not handicap? She says your not in wheel chair? At first I was taken back then explained to her (along w/my hubby) why I park there. She then understood. But the days I just want to lay in bed, she pretends to be my nurse and gets out her "play med kit" and takes my temperature etc. I think somedays she just forgets that I have issues. I have not been diagnosed with MS yet, but I do have other health conditions. I also have a 18 yr old that is very supportive. She always jokes around with me when I sometimes get one of the electric wheel chairs at Walmart, we just laugh!

[rocky282]

you guys are great

Thanks you guys, I have tried to explain in small kiddo terms to them what is going on. I think the hardest for them is that mommy has to go to the doctor all the time and they can't see the booboos. So my hubby and I started telling them that Mommy's booboos are in her head and that is why Mommy is sick sometimes. Now my son tells everyone that mommy is sick in the head. I don't know if that's exactly what I want him telling people, but it makes us all laugh.

[cosake]

Good for you. As they get older, and ask more questions, you will be able to give them more age appropriate details.

[kjgimnrn]

They won't know any better!

Your children are young enough, they will not know any better...take advantage of the days you feel well and do the best you can on the days you aren't so well...they will have great memories of you and them sitting and talking or watching TV together...it is all good! Telling your kids alot can be a mixed blessing...my 7 year old loves to tell everyone I have "mul-ti-ple scl-er-o-sis" even the checkers at the grocery store? It can be a little mortifying, but at least she understands it is why I am really tired somedays?!? You know your children and what is the best for your family. Take care.