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Well...what do u tell ur children?

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Posted 3/28/2007 4:11 PM (GMT 0)
Hey Everyone

Wow...my little girl is scared and upset. With all that's been going on with me over the last year or so i've been pretty careful not to moan and groan around the girls because children need to see that things are ok and they're safe, but apparantly Danielle wasn't buying it. She knows there's been something wrong. U can only hide so much, and she's been right here as i've been so sick lately. She came to me last night in tears. She asked me if i was still sick or was i ok. Of course i told her i was ok and nothing was wrong. After urging her to talk to me more she explained that she felt we were trading places...she was now taking care of me. HOW HORRIBLE! She's only 12. She said i used to laugh all the time, but now not nearly as much. A lot has changed in the last year. I've always felt they should know as much as their maturity and age allowed for, but still in the bigger picture, they need to know their world is secure. All i could do last night was tell her all was well and nothing was wrong. I know it's not good to completely hide things from them as that can make things worse if u'r condition worsens, but i just couldn't tell her any different. What do u all tell u'r kids? How do u handle the changes and even losses in ur family life that are bound to come with illness? My girls are 12, 9 and 8. I really felt my 12 yr old was mature enuf to deal with what she was seeing, but i see now she's not. I just feel horrible for having let her see any of it now. We are very close. We talk a lot and have discussed things that she sees in me, but she's never told me about her feelings like this before. She always just said 'it's ok'. Well it wasn't. How do u know when it's not really ok? How do u know what to say or not say while at the same time trying to be as honest and up front with them as u can be. Kids are not dumb or blind...they see...and if u'r lying they'll know. I've felt i was a good mother to my girls, but boy this makes me feel i've really let her down.

Posted 3/28/2007 6:00 PM (GMT 0)
Dear Rhonda,

Children know so much more than we give them credit. What we think is just between the parents is actually written all over our faces.

Even though you are not dx yet you could still check out the National MS website. The site has an area for kids and how to explain things.

Last year when the neuro first thought MS, I told my son. He asked me and I couldn't lie to him. I told him that the docs think I might have MS. I explained that sometimes my body works fine. Then all of a sudden, my body just starts attacking itself. I was tickling him as I said attacking itself. I told him how tired I get and shaky, things he already knew. His grandpa was dying of cancer at the same time. So he asked if I was going to die and I said no. I told him that sometimes I will be "normal mom" laughing, smiling, joking and playful. And other times I would be "tired mom". I told him that "tired mom" might need him to help around the house more and pick up after himself and if I need to take a nap to watch the girls for me. He understood very well. If he sees me lying on the couch he'll ask me if I need a nap. We also still have fun together! I tuck him in every night and I mention at least one thing I am proud of him for doing that day. I tickle him and then massage his back. We are very close and he is so strong!

One positive thing that has happened through this journey is that I don't yell at the kids like I use to. I cherish everything and I get to the bottom of problems before I loose my temper. Actually, I rarely loose my temper any more. Honesty is essential, I believe.

I know that there are support groups also for kids, forums like this. That way kids can relate to other kids and ask questions.

Take Care,
Lysha
Posted 3/28/2007 7:21 PM (GMT 0)
I was in my early teens when my mom was diagnosed with MS, and my sister is 5 yrs younger than I am.. I don't see the point in hiding it from your kids. They can see you don't feel well, and I'm sure they want you to feel better. And maybe helping you in your recovery- being your support system - will allow them to feel they can do that in some way. But they need to know what is wrong, a bit of what to expect, and more important, to know that you trust them enough to share this major part of your life with them. :) I bet they'd appreciate it.

Best of luck to you!
Posted 3/28/2007 8:35 PM (GMT 0)
Hi Rhonda,

 

    Aww I know its hard, my kids were about your girls age when all the medical issues started with us.  Kids understand a lot more than we think they do, they can see when something's not right.  I know your are not dx yet, perhaps you thought things might get better and you didn't want to worry them.  Telling them youre ok though when youre not really only makes them worry more as you are seeing in Danielle now.  It'll be ok though!  It just might be time to tell them what's going on. 

 

   I know not being dx makes it a little more difficult but you could explain that you have good days and bad days and the doctors are taking good care of you.  If they ask questions, try and explain best as you can at their level of comprehension.  If you wanted to tell them what they think it might be, as Lysha explained, the National MS society has a special section just for kids.  They can even get their very own newsletter about it. 

 

    Don't worry Rhonda, it'll be ok.  You might be surprised at how even very young kids can be a tremendous source of support and help to you. 

 

Kimber

Posted 3/28/2007 10:34 PM (GMT 0)

Hey Rhonda,

There is nothing worse than the feeling that your child is not happy and secure.  It just makes you feel sick to your stomach with worry.  Hang in there.  Kids are stronger and more resilient than we ever give them credit for.  Be honest with your daughter about your illness.  Tell her what you think it is  and what you know it isn't.  Tell her you're still the mom and you will be there for her even if it is from your bed. 

My boys went through hell right along with me.  They lived through all the wrong dxs with me (cerebellar stroke, brain cancer). They made it through my hospital stays, wall walking and even the vomiting!!!  You are a loving and supportive parent.  Your girls will get through this.  I know you feel guilty but remember this is not something you can control.  Try to let go of the guilt and just do the best you can - that will be good enough to get you all through this scary, crazy life.

Hang in there buddy.

love and prayers,

Posted 3/29/2007 1:07 AM (GMT 0)
Rhonda,
I think about this all the time. My daughter is only 1 1/2 and I think how are we going to explain me and my MS to her. It must be so hard. I think that you need to be as honest as you can be. I'm sure you are doing a wonderful job explaining things....Just take your time and deal with everything the best you can!
Posted 3/29/2007 1:35 AM (GMT 0)
Hi Rhonda.
My daughter had just turned 6 when I was diagnosed. I debated (with myself) what to tell her, and I could tell that she was concerned. I explained to her that I had a disease called MS, and that it made me tired a lot, and made my legs get tired very easily. I also told her that I would be giving myself shots since I have MS. Her main question was if I was going to die. Once I convinced her that having MS would not make me die any sooner, she felt more secure. That might be what's bothering your daughter.

Marchia
Posted 3/29/2007 5:17 PM (GMT 0)
Thurday p.m.

 

Miss Rhonda:

 

If I am not mistaken, the MS Society has a publication about such a situation.

 

Great luck.  John

Posted 4/3/2007 11:30 PM (GMT 0)
Hey Everyone!

Wow...u guys always come thru! Thanks for such good advice and support as always! I did listen and used some of u'r pointers in talking with Danielle. We went to a site so she could see other kids posts and concerns and that seemed to really help her. U guys were right...being as honest as i can with her and trusting her with knowing more has been good for both her and me. I now have someone who's asking me questions and taking an interest in what's happening to me. That feels good. I still don't feel i can tell her the raw truth about all of this, but i do feel i can bring her along more and more and have seen that her support in the way of her interest is so great. THANKS SO MUCH TO U ALL!!!
Posted 4/28/2007 6:17 AM (GMT 0)
Long time no type. Been very busy, so thought I would take some tim to catch up with you guys. I've missed you all so very much. I'm vey happy to haar that Danielle is accepting your situation. Knowledge is key. I only have one daughter (who's very sensitve by the way) and I was very nervous about telling her. During my diagnosis In September 2006 my father was also dying of brain cancer, so I didn't want to worry her even more. It was my only flare up and I ended up in the hospital for three days. AT this point I had to come clean about what was happening to me. I told her that I'm still going to be her mother, but there are going to have to be some changes around the house. We went on the children site that they mentioned above and litterally spent hours reviewing the information. It was a huge comfort for her to know that most people who have MS developed it at an early age. I told her that I've ha it for years and aside from the fatigue have been extremely blessed. She know understands why my nap times are so important. Since my original dx back in 2006, our loving dog of 7 years passed away suddenly, my father passed away in January 2007, and am right in the middle of a divore. UGH! Sometimes I am just amazed at her strength. She's experienced a lot of loss in a very short period. Be sure and spend that quality time that all girls (whether they admit it or not) love! Please keep me posted on her progress and yours. :-)
Posted 5/3/2007 7:46 AM (GMT 0)
I really feel for you. I don't have advice - just empathy. I am not yet diagnosed and just coming out of a 3mos flare. My children are 3 1/2 and 20 mos. We had to have someone come and move in with us because I haven't driven and have barely been out of bed. My 3 1/2 year old son is going berserk and so am I. Trying to explain to him that mommy is sick right now but mommy will get better. We told him that the doctors said that I need lots of rest and that will help me get better. Now he tells me "get in bed mommy, you need rest." My 20 mos. old shuts the door behind her on the way out of my room. I am really sick about it - but I have faith in the ability of children to process and adapt as long as they know that they are loved. I find that when I communicate as best I can on his level: "Today mommy is very tired, I will color with you tomorrow" or "mommy is feeling so much better today, you've been so patient and such a good helper! Let's color now" he seems to respond better, like he's in the loop and not feeling so out of control. I know this doesn't relate because your kids are older - but i just felt like I needed to share.
Posted 5/3/2007 2:28 PM (GMT 0)
Awwwww..Angielov!!!

I'm so so sorry!! Ur really struggling now and u'r proving to be so strong! Bravo to u!!! Hang on and it'll get better, tho now i'm sure it's hard to believe. U sound like a great mom...so loving. U'r absolutely right....they will adapt and get thru this much better than we think. It really hurts to see them want us and need us to be right there..and not be able to do it. Coloring seems like such a simple thing, but when u'r in the depths of a flare...the fatigue and pain and various other symptoms...that can be a mountain to climb. Don't be hard on u'rself. U'r doing a great job! U seem to be quite aware of what u'r children need as well as what u need to be a good mom. Keep going forward as u are and get stronger and stronger each day. U WILL be fine and u'r children will be too!! Thanks so much for sharing this with us and please let me know how u are.
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