Talking about MS with my son

[ssdw1958]

Today I was having a conversation with my 21 year old son. We first started talking about being strong I don’t mean physical I mean mentally strong.

I was talking about his grandmother who he never met, who passed away 26 years ago, she passed away from lymphoma (cancer) they only gave her 6 months to Iive. I told him how she tried any drug they would have helped her to live longer. And she did live longer. She lived 12 years longer. He looked at me and said is that why you will try new medicines when they are offered to you. I told him yes you are right After I look into it I will try it.

That’s why I am on Ampyra, I tried the Trileptal and now I am taking the Ocrevus.

Well I am glad I had that talk with him. He is a strong young man he has helped me out a lot of times. In many ways.

I think it is a good thing to let your children know what is going on with your disease. They are much stronger than we know.

[jackiesj]

Thank you for sharing this....kids are so smart, and yes, hiding wont be hiding long.Symptoms show.My kids dont live close but they know..i just have to ignore the husband.

[Jesmcd2 CommunityAmbassador]

You did good ssdw1958 🤗💕 Always keep that line of communication open! 😀

My girls are becoming more distant these days.🙁

🤗💕

J🌠

[ssdw1958 in reply to Jesmcd2]

I also have a son Utah and yes it is hard sometimes to talk but I do try to give him updates of what is going on to try to keep him in the loop. Like what is going on with my Ocrevus medicine because he dose ask me if it is working but you know it’s hard to tell him if I really don’t know if it’s working??

[kdali]

Yes! Thank you for sharing! Sometimes I wonder what this chat will be like for me and mine.

[carolek572 CommunityAmbassador]

Hey ssdw1958,

Great post!

Yes, children are sweet and they know when something is not quite right. Telling them relieves the stress and awkwardness that comes with 'hiding' things from loved ones. Telling them also strengthens the bond between parent and child. Show them they are strong enough for someone to depend on them.

Be strong,

Carole

[ssdw1958 in reply to carolek572]

You are so right.

[Elizt3]

I agree it is important to communicate with our kids. I grew up with a mother who had MS, who never shared anything about her disease. I remember as a kid being confused and worried, to say the least. My mother never shared anything about MS with anybody, except for her doctor and my dad. I’ve been much more open with my children and selectively share my health condition as needed with others.

*Does anyone have children who are worried that they will be diagnosed with MS at some point? My older daughter talks about this quite a bit. I understand her feeling because I grew up with the same worry (and, of course, with my luck, I was diagnosed). Anyone have comments on how to help children with this worry? When my daughter brings this up, I tell her the chances are very small and that new medications are coming out all the time. I tell her that if anything happens, she’ll get through it and I’ll be there with her. Not sure what else I should say?

[ssdw1958 in reply to Elizt3]

I liked your reply to your daughter it’s a good thing. My son had a girl friend who told him to get a test to see if he might get MS I told him it was not a good idea. For one I don’t think they have a test and for two this girl and her mother would have spread that information all over the place. Not soon after they broke up. He is so much better off and even his friends have told him so.

I also told him look what happened to me with my job they got rid of me I told him there are just somethings you keep to your self and the ones who truly care about you.

[lbenmaor in reply to Elizt3]

What a perfect response! All of us should keep that in mind.

Leslie

[RoyceNewton]

What a "GREAT" idea

[hairbrain4]

It's always good to be honest with family & friends. Then they know what to do when you need them.

[lbenmaor]

You are very lucky to have such a great son!

Leslie

[ssdw1958 in reply to lbenmaor]

Not to toot my own horn but he is such a good boy (but he is a young man) he is a supervisor at his job which is at Logan Airport. When they were going to give him the position (his supervisor knew his age) the big regional people didn’t know his age they thought he was 30 years old and he told them no I just turned 21. He is a good person he was one of my rocks. Everyone thought he was a lazy person when he didn’t get a job right away. Well he did have a job and that was he made sure I got in an out of the house safely. He helped me in what ever I needed that was his job and he did it so well.

[lbenmaor in reply to ssdw1958]

I don't feel like you're tooting your horn at all. You're showing us how much you admire

your son.

[ssdw1958 in reply to lbenmaor]

Thank you for your reply!

[lbenmaor in reply to ssdw1958]

You're Welcome.

[MS_Indestructible in reply to lbenmaor]

I'll second that

[LuMed79]

My girl is 9 and I was diagnosed before I had her. I’ve told her about MS and my limitations but she gets upset when I need to rest, can’t play outside in the summer or can’t take her to crowded and loud places. I tell her it’s due to the MS and that I’m sorry but I can’t do those things or it could make me feel worse. The guilt and frustration for me is tremendous though and I wish I had a better way to communicate these issues and symptoms to her. Thoughts?

[kdali in reply to LuMed79]

You’re living my fears. I hope someone with experience answers, mine is only 1 now, but we will be saying no to things soon enough 😑 Mom guilt is a slippery slope 💔 Lots of love to you.

[ssdw1958 in reply to LuMed79]

Hi I don’t knows if the MS society has books on how to tell children what MS is all about. My older son just was told I had MS when he was in high school I would let him know just what I could do and couldn’t do and he was ok with that. My younger son was in the first grade and he did ask me what MS was and why I couldn’t do certain things at the time we had a lamp that it would flicker off and on. I said to him you know how that lamp works good sometimes but not all the time and he said yes I replied that that’s how mommies legs work and he got it. This little guy said to me why can’t they fix it and I said that’s a great idea but right now they haven’t figured that out. As they say out of mouths of baby’s. He is growing like me in trying to find out about this monster of a disease that is Called MS. If only adults would listen to children.

[kdali in reply to ssdw1958]

Thank you Sandra! 😍😘 I love the lamp flicker analogy!

[ssdw1958 in reply to kdali]

It was so hard to explain what is going on with your body and to make it easier for a young child to understand. It’s unbelievable that some people think you don’t need to say anything. Well I think 🤔 they’re wrong.

[kdali in reply to ssdw1958]

Sometimes I think a child can understand or appreciate more than an adult 😍 Yeah, everyone has to cope, but there are lessons taught, intentional or not, in how you go about coping also.

[ssdw1958]

To kdaii please read what I wrote to LuMed79 it is the reply I’ve written to both of you.

Sandra

[kdali in reply to ssdw1958]

🤗

[Juliew19673]

Yes this! Good for you!

[jackiesj]

Loved this...I had the opposite happen, prove it to me you even have it....I quit, why I am a vicitm again at his hands or those who gossip..suffering is suffering.You obviously raised a very compassionate person...