MS and my kids

[gypsy]

I had a heartbreaking realization on Tuesday morning. I've been home from work for a few days because I developed pnuemonia after taking a two week course of prednisone for a relapse. I was getting my 6 y/o daughter ready for school Tuesday morning, when she started crying that she didnt want to go to school. I asked her why and she says to me "I worry about you all day because of your moldable sterosis and if I stay home with you, I can take care of you". I cried. My six year old babygirl shouldnt be worrying about her mother.

It made me realize that MS has not just changed my life, but it has forever changed my childrens lives as well.

[jazzgirl]

Awww...that's sweet and heartbreaking all at the same time.

Gypsy, I think it would be a good thing for you to contact your chapter of the National MS Society so that they could send you information to help explain your disease to your children. The name of the program is Keep S'myelin, and you can read all about it here: http://www.nationalmssociety.org/multimedia-library/kids-keep-smyelin/index.aspx.

She'll be okay, Gypsy. Let her use the coloring books that come with the above-mentioned program while you explain things to her (and you can color, too! ). Keep it simple and on her level.

Rest as much as you can and feel better soon!

[aitch10]

That's so sad

But what a sweet girl you've got!

[rocky282]

Oh so cute

I know it breaks my heart when my little ones (4, 3 and almost 2) get together when I am sick. They bring me pillows and blankets, and now my daughter, she's 3 tells me to go to bed because I look sick and need a nap. They even ask if I remembered my medicine. Sometimes I laugh, and other times I cry. I should be taking care of them and they shouldn't be worrying about me! My therapist said that it doesn't hurt them though, they are learning compassion. Perhaps you can think of your daughter in that light as well

I do everything else for them, cooking and cleaning and all that, but sometimes it feels like they think they are the parents, and they really make my husband laugh.

[Tawanda]

"I worry about you all day because of your moldable sterosis

It made me realize that MS has not just changed my life, but it has forever changed my childrens lives as well.

Yes, my daughter has never known me without M.S. I was diagnosed when she was just 3, and she called it "M.F."! Out of the mouths of babes!

Hang in there, there are lots of us M.S. Moms out there just like you...doing the best that we can....what more can we do than that?

[ShanZro]

(((hugs)))

My 12 year old daughter said something similar to me. One morning she said she didn't want to go to school and when I asked her why she said "Because I worry about you being home alone, and if I am home with you I can take care of you and help you" It breaks my heart to see how me having MS affects my daughters.

[hunterd]

my daughter was born after my dx, so it`s not any big deal to her. my son was 3 at dx and my disabilities started a few years later. i let him read the nmss website (for kids) at his own leisure. he`s now 13 adn still logs on to the site for info. it`s an issue, but a small one.

good luck.

dave

[Seasha]

Hi Gypsy,

What a touching story.... You got some good advise here already, but I just wanted to share my story. I have lived with MS for 22 years now. My kids are now 41, 29 and 27, so they were young when this disease started flaring it's ugly head out. All I can tell you is that my children (and yours too) are very resilient and intelligent. I believe that witnessing my journey - the highs and lows - have made them much stronger people because of it. They have more compassion for people who are not as able as others and are able to better "roll with the punches" that life seems to offer - for better or worse - in their own journeys.

I have always tried to be very open with them about this disease and answer their Q's in an age-appropriate way. I;m not trying to paint an entirely rosy picture here. There were some pretty rough and ugly bumps in the road, but this happens in every family.

Yes, your children's lives may be changed, but it can be for the better!!! I think that all will be well with you and yours.

Take care
Seasha

[jesimae]

understand

My 9 year old daughter is seeing the counselor at school since I've been sick. It's very traumatic to her, especially since we're not yet sure what my diagnosis is.

I try to shield her from as many symptoms as I can, but that's not always possible. She will ask me many times a day, "Mom are you ok?"

She cries a lot about it and says things like, "I don't want you to be sick! It's not fair!"

Her birthday is in 2 weeks and we were planning her party today when she said, "Mom, I don't have to have a sleepover this time, and we can have the party here in case you don't feel good. That way you can just go lie down if you need to."

She's so sweet, and it is NOT fair to our children that so much of our lives is devoted to caring for ourselves. It's extremely hard for me to have to deny her activities that we used to do together, but we're coming up with new ones that are easier.

I pray about this very thing a lot. I will include all of you in that prayer as well.

[Alicious]

All of these stories about sweet kids break my heart.

So far we've been able to hide it from our kids. I have a couple of four year olds and they've only noticed one flare (my first flare was pretty mellow).For now we're treating flares as separate illnesses, and when they are older we'll tell them it's part of a larger picture. I'm sure it's a matter of time before someone sees me injecting, so the conversation may start sooner than later.

[princess4ever]

Ah!

This post made me cry, in a bittersweet kind of way.
My kids are 15, 14 and 12 year old twins. I've been DX for the past 5 years, so it started early for my kids as well. One of my sons has a mild form of Autism and sometimes even now if I'm having a bad spell, will cry and say he doesn't want me to die. It breaks my heart.

On the other hand I do agree that it has made my kids have more compassion, and lets them see a side of this world that they may have not understood before.

We are all blessed to have such amazing, caring, loving kids!

[gypsy]

I totally agree that kids learn compassion from this ordeal. It's been a few months since I posted this and my daughter can now pronounce it right, though she'll usually say ms. My oldest child, 15, has told me that he's decided he wants to go to P.A. school, so that he he can practice medicine and help people and my 12 y/o gets a kick out of getting the motorized cart for me when we go to the store. I still see the worry in their faces when I stumble or when my words dont come out right, but we're learning to laugh again.

[jenainwonderland]

My mom had MS, pretty bad she stopped walking when I was 8 and she had flare ups most of my life that would have her in hospitals and rehab centers for a month once or twice a year. The thing that probably helped the most was meetings with the MS society, they had meetings for kids to help explain things. It was nice to be around other kids who were dealing with the same issues.