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What do our kids think of MS?
Hey guys and dolls,
My son sent me this email and it made me think about what other kids are thinking and feeling and if you know. I'd love to hear your story of understanding if you have them, and if you dont it may start you see the unwritten..
"What is it like to have a Mother with MS?
Before i tell you how i feel about having a Mum with Multiple Sclerosis (MS), i must tell you that being different than the others is kind of common in my family. As a result, we all embrace the fact that we're different from each other and therefore we fuction better than the average "normal" family.
Having a MS Mum can be quite worrying, for every time she goes out by herself in the car for a long time, i worrry that she can get the shakes and end up shaking herself off the road.
(Thankfully, this never happens.)
having a MS Mum can also be restrictive. I Rarely let mum cut my hair due to the (unnessary) fear that mum might cut my ear off (i wonder if Vincent Van Gogh had a ms mum?).
Despite all the negatives of having a MS Mum, it is NEVER all bad. Having a mother with MS gives you a different perspective of life, teaches you how to be responsible for someone else while not being completely independant, lets you learn to conserve energy while still going full steam ahead, and all the while proving that there are things in life that are fragile, things you can love, things that love you back and things that are a combination of all three."
All i said to him is if you ever want to talk about things, i'll always have time to listen. Prompted by him seeing me do the uncontrollable jerk about (myoclonic?) when he was talking to me yesterday morning, it shocked him, i did talk it down at the time but wondered if he needed to get out some of his worries, and this is what he came up with.
Wow what a man he's going to be, he feels, he loves, what else could a mother ask for?!
HUGS to you and yours............JJ
My son sent me this email and it made me think about what other kids are thinking and feeling and if you know. I'd love to hear your story of understanding if you have them, and if you dont it may start you see the unwritten..
"What is it like to have a Mother with MS?
Before i tell you how i feel about having a Mum with Multiple Sclerosis (MS), i must tell you that being different than the others is kind of common in my family. As a result, we all embrace the fact that we're different from each other and therefore we fuction better than the average "normal" family.
Having a MS Mum can be quite worrying, for every time she goes out by herself in the car for a long time, i worrry that she can get the shakes and end up shaking herself off the road.
(Thankfully, this never happens.)
having a MS Mum can also be restrictive. I Rarely let mum cut my hair due to the (unnessary) fear that mum might cut my ear off (i wonder if Vincent Van Gogh had a ms mum?).
Despite all the negatives of having a MS Mum, it is NEVER all bad. Having a mother with MS gives you a different perspective of life, teaches you how to be responsible for someone else while not being completely independant, lets you learn to conserve energy while still going full steam ahead, and all the while proving that there are things in life that are fragile, things you can love, things that love you back and things that are a combination of all three."
All i said to him is if you ever want to talk about things, i'll always have time to listen. Prompted by him seeing me do the uncontrollable jerk about (myoclonic?) when he was talking to me yesterday morning, it shocked him, i did talk it down at the time but wondered if he needed to get out some of his worries, and this is what he came up with.
Wow what a man he's going to be, he feels, he loves, what else could a mother ask for?!
HUGS to you and yours............JJ
wow im sat here crying !!!
i can so relate to this with my children 12 and 10. i have been suffering for a few years now and told them that i had a bad back after being knocked down as a child. and that i could not do the things with them that they wanted , playing football, bike riding, running in the park, i allways said when then asked could we do !!!!! some thing at weekend lets see how dad feels on the day knowing i would end up not doing it made me feel so inadequate as a dad.
the more i do the stiffer i become so my life as become a lot sedate ...
but now im going through the dx process wiyh my neuro and MS specialist they could see i was getting worse so i knew i would have to tell them something as kids are not stupid!!
so about six weeks ago i sat them both down and said i have something to tell you.
they both sat there as i told them that the doctors i see think i have MS and are being checked out and thats what all the appointments were for. i told them im still going to be around as i allways have but cant do the thing that other dads do and that all my problems could be down tho havibg MS and not just my accident.
they both cried with me and said we knew it was not just your back dad and its means nothing as they dont know me any different for the last few years .
they both said they understood and would help me if i needed it .
i felt as if a great weight had been lifted cos i had kept it all hidden from them for to long
now they cant do enough for me lol
im so proud of my children on how they excepted the news it just goes to show how grown up kids can be ??
iv told them that if ever they have a question please ask me and will try to explain it.
regards bairdy
i can so relate to this with my children 12 and 10. i have been suffering for a few years now and told them that i had a bad back after being knocked down as a child. and that i could not do the things with them that they wanted , playing football, bike riding, running in the park, i allways said when then asked could we do !!!!! some thing at weekend lets see how dad feels on the day knowing i would end up not doing it made me feel so inadequate as a dad.
the more i do the stiffer i become so my life as become a lot sedate ...
but now im going through the dx process wiyh my neuro and MS specialist they could see i was getting worse so i knew i would have to tell them something as kids are not stupid!!
so about six weeks ago i sat them both down and said i have something to tell you.
they both sat there as i told them that the doctors i see think i have MS and are being checked out and thats what all the appointments were for. i told them im still going to be around as i allways have but cant do the thing that other dads do and that all my problems could be down tho havibg MS and not just my accident.
they both cried with me and said we knew it was not just your back dad and its means nothing as they dont know me any different for the last few years .
they both said they understood and would help me if i needed it .
i felt as if a great weight had been lifted cos i had kept it all hidden from them for to long
now they cant do enough for me lol
im so proud of my children on how they excepted the news it just goes to show how grown up kids can be ??
iv told them that if ever they have a question please ask me and will try to explain it.
regards bairdy
Hi Meg
I think that your heartfelt post may get lost in this one and that it may be helpful for you to post this again as your own post? Sounds like you need some support and input from your friends on the forum. Sending hugs
Love Sarah x
I think that your heartfelt post may get lost in this one and that it may be helpful for you to post this again as your own post? Sounds like you need some support and input from your friends on the forum. Sending hugs
Love Sarah x
COMMUNITY LEADER
I know this boy of mine is a one in a million, when he was a toddler he would weep hearing classical music, another child crying in pain would have him running to escape their pain or he would be crying too, hearing real laughter makes him belly laugh even though he doesn't know whats funny, he's always said he feels the emotion, he doesn't know why just that he does.
I have found though out his childhood he was the type of boy who needed truth or his imagination internalised his fears, truth has always been better for him but that doesn't mean it was appropriate to volunteer things unessesarily. When i started walking like a string puppet, it sort of made it harder for me to hide lol
I dont know if its mothers intuition but when ever he was in real trouble and overwhelmed by emotion, I wouldn't be able to get him out of my thoughts. Once in my gut i just knew something was very wrong and when i got to his school, he was in an emotional mess and on seeing me he said "I knew you'd come, when I need you you always come" so its with that faith in our closeness (real or imagined) that I trust my motherly instinct with him.
I think thats we all need to do, trust our selves in what we divulge and what they are ready for, but its also important to remember the stories of others, kids are notorious for blaming them selves and sometimes its better for them to be kept in the loop, than to let their imaginations run off the rails. They see more than we realise, they are tricky that way lol.
Cheers........JJ
I have found though out his childhood he was the type of boy who needed truth or his imagination internalised his fears, truth has always been better for him but that doesn't mean it was appropriate to volunteer things unessesarily. When i started walking like a string puppet, it sort of made it harder for me to hide lol
I dont know if its mothers intuition but when ever he was in real trouble and overwhelmed by emotion, I wouldn't be able to get him out of my thoughts. Once in my gut i just knew something was very wrong and when i got to his school, he was in an emotional mess and on seeing me he said "I knew you'd come, when I need you you always come" so its with that faith in our closeness (real or imagined) that I trust my motherly instinct with him.
I think thats we all need to do, trust our selves in what we divulge and what they are ready for, but its also important to remember the stories of others, kids are notorious for blaming them selves and sometimes its better for them to be kept in the loop, than to let their imaginations run off the rails. They see more than we realise, they are tricky that way lol.
Cheers........JJ
My kiddos are still so little... for better or worse "sick mom" may be the only mom they ever know or remember. It's hard when I think about that, and harder still on days when I can't physically care for them the way I want to, but I'm determined to be the best example I can-- of how you can't control the cards you're dealt, only how you choose to play them.
I have a daughter that doesnt really like me and its not new. If anyone rememebers me talking about her before, its beem an ongoing problem.
Although I did not know it had so much to do with my MS...but in talking with her, which is not often, we were stuck with together at a wedding. Anyway, she said at one point that I am not much different than I was before, that I had been this way for a long time.
After given more time to process it, I don't know how long I have had MS, and I did act this way before but it is so much worse now. She doesn't really know that because she never takes the time to talk to me.
Thinking back, for some reason, I always embarressed her....and I always felt uncomfortable when I was with her at any kind of function....famlily or friends. Sometimes I would quietly sneek out and it was not noticed. She always compared me with her mother in law or even her friends, as if I wasn't as good as they were. She never said that, but it was made very clear too me.
She also has her own disease now, which is much more important to her than anyone else, certainly not mine. I have tried hard to support her thru this but its a bit useless since she implied last time we talked that maybe I should get a life..lol..not in thsoe words but thats how it came out of her mouth.
She talks to me as if I am a child she can scold and I know nothing. Plus she has never really even asked me much about MS and rarely asks how I am doing.
I am at a point now where I am not sure what to do about it so I am not doing anything....but it hurts..
thanks, meg
Although I did not know it had so much to do with my MS...but in talking with her, which is not often, we were stuck with together at a wedding. Anyway, she said at one point that I am not much different than I was before, that I had been this way for a long time.
After given more time to process it, I don't know how long I have had MS, and I did act this way before but it is so much worse now. She doesn't really know that because she never takes the time to talk to me.
Thinking back, for some reason, I always embarressed her....and I always felt uncomfortable when I was with her at any kind of function....famlily or friends. Sometimes I would quietly sneek out and it was not noticed. She always compared me with her mother in law or even her friends, as if I wasn't as good as they were. She never said that, but it was made very clear too me.
She also has her own disease now, which is much more important to her than anyone else, certainly not mine. I have tried hard to support her thru this but its a bit useless since she implied last time we talked that maybe I should get a life..lol..not in thsoe words but thats how it came out of her mouth.
She talks to me as if I am a child she can scold and I know nothing. Plus she has never really even asked me much about MS and rarely asks how I am doing.
I am at a point now where I am not sure what to do about it so I am not doing anything....but it hurts..
thanks, meg
I would be immensely proud of my son if he wrote that, and it shows compassion and understanding that is often not seen in adults!
Your post made me think about my kids and how I am with them. I am generally very open about everything and have always had this policy that you can not always wrap them up in cotton wool. However there is a part of me that does not want to overdo MS and I do not want them to feel guilty, sorry for me but just want to know that if I need help it is Ok to ask. This is generally how things work for our family at the mment. The kids are not very good at offering their help but are amenable if asked. I guess I drip feed them little bits about MS from time to time and if I am not feeling so good I will remind them as they cannot see the symptoms I am feeling.
Anyhow I know you will be so very proud of your son and quietly purring!
Love Sarah x
Your post made me think about my kids and how I am with them. I am generally very open about everything and have always had this policy that you can not always wrap them up in cotton wool. However there is a part of me that does not want to overdo MS and I do not want them to feel guilty, sorry for me but just want to know that if I need help it is Ok to ask. This is generally how things work for our family at the mment. The kids are not very good at offering their help but are amenable if asked. I guess I drip feed them little bits about MS from time to time and if I am not feeling so good I will remind them as they cannot see the symptoms I am feeling.
Anyhow I know you will be so very proud of your son and quietly purring!
Love Sarah x
This is awesome JJ!
I have to admit, this is a concern of mine. I'm not dx'd yet. They know I haven't been feeling well and I was sick for several months last year but it's not something I openly discuss since I haven't been diagnosed. My kids have been through so much, telling them will be difficult. I don't want them to worry but I think once they understood they all will be okay. Telling my husband is going to probably be my breaking point. I realize this will impact our future in some unknown way.
So far, I can hide it --- Most are things *I* notice my symptoms are subtle and thingsI think only I really notice; double vision, twitching, myoclonus. The balance and coordination issues (they just think I'm clumsy.) Tremor's are just now starting to get to the point where my arm/hand "miss" it's target and it's so slight I don't think anyone notice. I do worry that I'm going to drop my drink or spill it these days. My gait is okay unless I'm doing the heal to toe test or stand with my eye closed (I don't do those often. lol) I do worry though how I'm going to address this when the time comes. Any advice?
I have to admit, this is a concern of mine. I'm not dx'd yet. They know I haven't been feeling well and I was sick for several months last year but it's not something I openly discuss since I haven't been diagnosed. My kids have been through so much, telling them will be difficult. I don't want them to worry but I think once they understood they all will be okay. Telling my husband is going to probably be my breaking point. I realize this will impact our future in some unknown way.
So far, I can hide it --- Most are things *I* notice my symptoms are subtle and thingsI think only I really notice; double vision, twitching, myoclonus. The balance and coordination issues (they just think I'm clumsy.) Tremor's are just now starting to get to the point where my arm/hand "miss" it's target and it's so slight I don't think anyone notice. I do worry that I'm going to drop my drink or spill it these days. My gait is okay unless I'm doing the heal to toe test or stand with my eye closed (I don't do those often. lol) I do worry though how I'm going to address this when the time comes. Any advice?
JJ,
You have a wonderfully sensitive, and bright young man. I know you are proud of the man he is becoming.
I do not have children. I never married, either. I have a niece who has walked this journey with me. She lives about 17 hours away. Her husband is active duty Air Force, and I did not want to "burden" her with my problems. It was not a favor when I went to visit at Christmas last year. I had tried to prepare her just a bit right before my arrival, but keeping her out of the loop as much as I had meant she was not ready to see me with the deterioration I had suffered.
Now I keep her informed. It is much better for her. She has gone through the steps of the grieving process, and is able to hear what I tell her now. She can be sad without being shocked.
Beth
You have a wonderfully sensitive, and bright young man. I know you are proud of the man he is becoming.
I do not have children. I never married, either. I have a niece who has walked this journey with me. She lives about 17 hours away. Her husband is active duty Air Force, and I did not want to "burden" her with my problems. It was not a favor when I went to visit at Christmas last year. I had tried to prepare her just a bit right before my arrival, but keeping her out of the loop as much as I had meant she was not ready to see me with the deterioration I had suffered.
Now I keep her informed. It is much better for her. She has gone through the steps of the grieving process, and is able to hear what I tell her now. She can be sad without being shocked.
Beth
That was a beautiful email your son sent you...I too would be very proud of him...And you are absolutely correct about the qualities you try to raise in your children...And he has them...What else does a parent want?...
I have 2 daughters with 2 grandchildren...Telling them (I knew) would be difficult...I mean being diagnosed with ms...They live 3 hours away...(what the heck am I typing?)...Anyways, it devastated them....I feel so horrible for this...My youngest daughter will be moving in with me TONIGHT oh wow....My oldest daughter is coming up too but just to visit and help out around the house....Since diagnosed this past April my house has gotten a bit untidy..
I don't know...I don't want my youngest daughter and her son to move in with me...I am tired...I'm sorry but it is very sad for me to have my children and their children witness the deterioration of someone that they love....I'm going back to bed...
Michael
I have 2 daughters with 2 grandchildren...Telling them (I knew) would be difficult...I mean being diagnosed with ms...They live 3 hours away...(what the heck am I typing?)...Anyways, it devastated them....I feel so horrible for this...My youngest daughter will be moving in with me TONIGHT oh wow....My oldest daughter is coming up too but just to visit and help out around the house....Since diagnosed this past April my house has gotten a bit untidy..
I don't know...I don't want my youngest daughter and her son to move in with me...I am tired...I'm sorry but it is very sad for me to have my children and their children witness the deterioration of someone that they love....I'm going back to bed...
Michael
By the way, long before MS came along I did snip the ear of one of my sons cutting hair. After that, NONE of them would let me touch them...lol...
I was going to hide my horrible backache (remember I didn't have a dx until last year) until my last son finished college. However, he chose to go into a FIFTH year majoring in two fields..So all they knew was Mom had a backache. What they didn't know was Mom was in a wheelchair for any distance. They didn't know I could no longer lift a pot to cook those huge meals when they would pile into the house on weekends. Why? Because I hid it. I didn't want them to worry about me during those tender years. I wanted them all out of college. My husband did everything for us. He would cook the meals with my directions. He made it look like I had...as usual...done it all.
During that fifth year of my son's college the story needed to come out. I could no longer even pretend to get to events without wheels. Did I do them any favor?
No. It was probably the worse decision I ever made. Why? Because too many times one of them would stop by...I would be crying and trying to hide it. It might be Spring and I couldn't garden or being afraid of what might be wrong and we would never know. The boys talked in private. They feared far worse than what it was for me. Their minds filled with more anxiety than they should have had I been honest.
I think your son's post is beautiful. It shows he has an understanding of the disease. He has grown into a compassionate being. I would be so proud of him....Honestly, I would burst. I know today that we really can't hide things from our children. It is best to be upfront as you have. He might worry but I think he worries less than the child left in the dark to wonder.
Just my take.
During that fifth year of my son's college the story needed to come out. I could no longer even pretend to get to events without wheels. Did I do them any favor?
No. It was probably the worse decision I ever made. Why? Because too many times one of them would stop by...I would be crying and trying to hide it. It might be Spring and I couldn't garden or being afraid of what might be wrong and we would never know. The boys talked in private. They feared far worse than what it was for me. Their minds filled with more anxiety than they should have had I been honest.
I think your son's post is beautiful. It shows he has an understanding of the disease. He has grown into a compassionate being. I would be so proud of him....Honestly, I would burst. I know today that we really can't hide things from our children. It is best to be upfront as you have. He might worry but I think he worries less than the child left in the dark to wonder.
Just my take.
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