My daughter has been dx’d with a very nasty illness (not m.s.) I am devestated and worry about how things will pan out.
This is exactly the situation our children are put in when they are told we have m.s. Yet few posters seem to acknowledge the massive burden this places on their children. This burden may well become almost intolerable.
I am not suggsting we don’t tell our children. What concerns me is that it is easy to delude ourselves that because a book about ‘Telling the Children’ has been studied and because the child(ren) seem to have accepted things then everything is o.k.
It may not be.
We have to more ready to accept that the child may have problems understanding what is going on. We must be careful not to place our perceptions of things on to the child.
We need to find ways to minimise the damage (sometimes hidden) a dx of m.s. can cause within the family.
I knew my mom had ms from a young age and it didn’t damage me. It upset me when I found out but it was the way it was explained to me so i understood that mom would be ok. surely it was better for me to know why my mom couldnt get out of bed somedays. My family have always been an open family and will talk about anything thats on our minds. Also as someone who has ms and wants children in the future I would want my children to know. Maybe not all about ms but to have a little understanding especially as they get older as i beleive a women with ms is more likely to have a child who will have ms and knowing about my moms ms helped me when I started getting symptoms. I dont mean il be telling small children there is a chance they might get it or how bad it can be. Everyone has there opinion of this topic but I dont see why its such a big deal?
Sorry to hear about your daughter. My two are both adults now but over the years, I have been through worrying times with them. They still bring me worries…just grown up ones.
I agree, we should always avoid placing to much of a burden on children. At the same time, we have to explain and share things with them in order to avoid their overactive imaginations, going into overdrive. Its really about giving them information that is age appropriate. I think maybe this is were a well written book can come in handy for parents as a bit of guidance.
The book should never be used alone but along side other tools, such as counselling for example.
Hi zetland Sorry abour your daughter. My illness doesn’t have a name and I wish to god my son knew nothing but unfortunately I didn’t have much option in not telling him. My husband and I seperated the week before my first attack. Having never been ill in my life I couldn’t write couldn’t walk I’d drop foot my arm didn’t work. I dropped my baby when she was 4 months old thought I was getting better and it just went. So how do you propose I hide that from him!! My second attack I was in hospital again for a week with an eye patch kept bumping into things. I had to live with my parents I used to have a bath get dressed and my dad would wash my hair over the sink to keep my eyepatch dry I couldn’t take it off them for a minute I would start being sick. My daughter is now 10 months old and sleeps at my parents. I have her a lot through the day or go round all day to my mums I feel sick and guilty every day when I drop my daughter off or leave mums I am devastated that this disease can be so cruel. I meg someone down at a local shop who asked how my baby was as she hadn’t seen me when I told her the story she said I feel so sad to hear your news when you left the shop with your son I used to think how good a parent you are! I went out to the car and cried. I didn’t have any kids with me so they didn’t see me. Everyday I worry about them and I hide as much as I can from them they never know the pain I’m in as they don’t need to know that. I do not take anything lightly. I’m having a hard time just now accepting things and I feel guilty for my children as my son was used to going on adventures with me every day and life has totally changed. I simply am not able but I make myself do things no matter how much pain it causes me to do things with him. My parents are amazing with the children and are in their early 50s so are very able for them for which I am entirely grateful. They lost £600 in November as they couldn’t go on a mini break as I was new out of hospital. Because they said that’s what you do for your kids. And your posts today have just made me feel worse. Maybe you’d like to offer advice or have the number for a magic fairy to make us all better so we didn’t have to tell our kids anything! Thanks Emma
He doesn’t know all about ms purely the challenges that are being faced at that time. I think no child deserves it but sometimes life isn’t fair. And maybe that’s not a bad thing where everything is handed to children on a plate. What I do know is my children are cuddled, kissed and told how much I love them every single day!
Hi Zetland I’m really sorry to hear about your daughters unwell and hope there is medicine or treatment available that will help her get well. In regards to telling our kids about MS like Blossom has said on her post the book is helpful to guide parents who want to have a discussion with our children about MS. I said on your earlier post that I have read it with my son and it did help us at a time where it was needed. Of course I would rather protect my son from everything I can in life but as we all know sometimes what we want or plan for in life isn’t always the journey we take or what we want. Take care Polly x
Sorry to hear about your daughter. I agree we should avoid placing too much on young shoulders but equally feel children do not hide their feelings well. Vigilance is the key we just need to know the signs of anxiety, stress etc in each child. It is up to the adults to ensure children are not placed in a position of being unable to talk about whatever is on their mind and that whatever fears they may have are real and not dismissed as silly by the adults around them. That’s where extended family can be so helpful. Sometimes children need to talk to people who will understand but are not members of their immediate family.
Years ago we had just moved house, my young daughter started delaying tactics at bedtime - normal behaviour- maybe for some children but not this one. She was scared of the new curtains because she could see faces in the pattern. Curtains changed problem solved. Wish it were that easy every time. It is a case of knowing the child and how much information they can reasonably handle and being sensitive to their feelings and always answering questions truthfully, factually without drama in age appropriate language. It’s not a case of one size fits all we are all different and so are our children.
Hi Dinks I totally agree on your points, I needed help with my son as he stopped going out to play, he would never leave my side as he was really worried I was going to die. I spoke with my GP and MS nurse about how do help my son as he has never seen me as ill before. He would cry when I would go to hospital even for checks up, he would run home from school with my dad making sure I was in the house. I advised the school so they could keep an eye on him as was really worried for him. That was why I had a chat with him and I’m glad I did. He has since then been more open with me about how he’s feeling and when he wants to ask me stuff he does. I try answer as best I can which isn’t always easy. He now goes back out and plays with his friends, he still check up on me but we have came along way in the last 6 months. Polly x
Hi Polly - bless the wee man. Lovely to hear that he is now taking things more in his stride. He gave you the signs to pick up which you did. Onwards and upwards it sounds as if you are raising a caring sensitive young lad.
Hi Polly Glad your sons doing much better it’s horrible when you can see they are worried. I asked my sons nursery to keep an eye on him and they’re really good at keeping me up to date. Callum can be quite deep I keep an eye on him I know when something’s working on his brain and keep an eye on him and watch a favourite movie cuddled in as I know that that’s when it will all come flooding out whatever has been going on. Or if I get me him and my dad together doing stuff then he’ll speak to is, like today I got told there wAsnt anyone to play with at nursery as it was mostly girls but he wanted to chat to us about it. I find in that situation If I pretend I’m half listening but potter about more information is volunteered if I wAs to drop tools he would stop talking. Everyone knows their own child how they behave etc LAst year when I was pregnant I knew I was having a girl and her name and so did Callum. A friend got her son to ask him At nursery. The teacher told me that his friend had asked and Callum replied. I’m not telling you, so his friend asked is it a girl again Callum replied maybe or maybe a boy. He hadn’t heard that from me, when I asked him about it I said why didn’t you tell your friend. He’s like because it’s family business and he was being nosy. But he would chat to me about his baby sister, so he’s obviously quite personal.
We take each day as it comes now but hopefully onwards and upwards for the both of us. Em your wee one sounds so sweet. Typical boy at his ages not wanting to play with the girls, later in life he will be chasing after them! My sons school have been great they keep me informed on how he’s been fortnightly and no manager concerns. His school each year give the pupils a chance to win a weeks holiday to a caravan park. They have 8 in total and Kyle won this year, he’s been on a high ever since as he’s never won anything big before. So the first week at Easter were having a wee holiday it’s just what we need. Polly x
Thank you he is 4 going on 24 at times. He wants to know why he has to go to school next year because I could just work. He’s adores gardening and DIY. My ex is a plumber. My dads a fisherman but has lots of time off so plasters paints etc so Callum is very hands on. I can feel battles ahead. He’s learnt attitude lately, I’m quite strict but fair and I had had enough of back chat and I just mentioned I better not ever here of you misbehaving at nursery. And the reply came I would never behave like that at nursery you have to be good. That’s why I got a sticker last week for good manners I was the only one to get one. So at that point I felt proud and then he finished by saying I’m just bad here. Took down the proudness level. But he’s a great kid even though he’s mine. Manners cost nothing. His sister on the other hand is mischief personified she is starting terrible toes at 10 months. She’s learned to slap and this is where it’s hard her staying at mums as mums like I am grandma not mum. Anyway she slapped me as I told her she wasn’t getting to so something so I told her off and was like that’s bad and wagged my finger and said no no no eh eh eh but she’s been quite good since as it had become a habit which had to be broken. But she was sitting on my knee playing I told her no she slapped my arm with her eyes dancing twinkling into mine and before I could say a word she wagged her finger and said eh eh eh with a big smile. I’m so glad I breakfast fed her till they put me on meds. My mum had to give her too me to feed and I really couldn’t do anything for her. Mum was essentially her carer but the bond is there. My mum just said the other day when I arrive she looks at no one else. And most days I’m there till bedtime and when I hand her back she just looks and waves her hand. I’m sure she thinks she’s the queen it’s like a royal wave. Sofia on the disney channel has a lot to answer for.
Hi Polly that’s great for your son and you hopefully you will have an amazing holiday. I hope the weather is Amazing for you. Hopefully it will be. You deserve a break. Callum doesn’t like girls he had a huge crush in the summer kept going on about this girl so I asked the teacher who she was one day where she introduced me to the 17 year old student. Then we were at the hairdressers at Xmas I said you haven’t mentioned the girl from nursery for a while do you like a girl In the class where he said oh I’m so over her jade from the hairdressers is really pretty. Have u noticed I like blonde hair. So it appears he likes the older woman lol. 2 girls in his class really like him he gets presents and letters home from them all the time. He’s like it’s so embarrassing. Lol he didn’t want to send any valentine cards. But my dad took him to Tescos and he bought me a bunch of flowers. Best present I could have got. Apologies for going on about my kids. They are my life and I was quite upset earlier by some of the posts. Everyone is entitled to their own opinions. X
I’m sorry to hear about your daughter. We never stop worrying about our children, no matter how old they get.
I was very well aware of the ‘burden’ of telling my son I had possible MS which is why I didn’t tell him even after I was hospitalised with my first attack. However, when I had the second attack I had to tell him and admit that I had known for the past 3 months what the likely outcome would be if I had further symptoms. He was 15 at the time and I had been trying to protect him as he was in the midst of his GCSE courses and was taking maths a year early.
If anything he was angry that I had kept the truth from him for so long whilst I had confided in my parents and a close friend. This was on the advice of the hospital as, if my speech had been affected again and I couldn’t make myself understood, someone else needed to know so they could take me straight back to hospital. I had misunderstood just how mature he was, although he did need reassuring every time I had a hospital appointment that it didn’t mean I would be admitted for another week, bless him.
Of course the diagnosis affected him as much as it affected me. We worked through it together, we were both angry at the disease, scared, a bit tearful. BUT we got through it together, as a team.
He is 20 now and still so supportive and protective of me. I have been a single mum to him since he was 5 and we are very close. When I had the recent breast cancer scare I did try to keep it from him again at first but he knew something was wrong when I opened my mail. I told him and he immediately hugged me, told me how strong I was and that we would get through this too whatever happened. After my op, he picked me up from the hospital and bought us a takeaway for tea (well cooking would have been a bit too much for him lol) and looked after me for the evening.
We always talk about anything and everything - always have done and always will. Obviously when he was younger I would keep things age appropriate. His friends always say they wish they had the same kind of relationship with their mums so I take that as a huge compliment.
No-one teaches us how to be a parent, kids don’t come with a manual, we can only do our best. I always believed in apologising to him for my mistakes (and there were lots) because I couldn’t expect him to apologise for his unless I was big enough to do the same. On some things we had to agree to disagree and respect each other’s opinion …
I think one of the biggest fears kids have and relate back to illness is that if mortality. They think mummy is really ill and is going to die. I have found that placing as much of a positive spin on it helps sometimes. They know I can’t do as much as they would like me to, that mummy gets tired or sometimes mummy can’t walk very far, but they know that despite that mummy is and will always be here and this isn’t going to make mummy go away forever. That’s how I have personally dealt with it and everyone has their own methods in dealing with it. If anything my husband has took it the worst seeing me go from a normal fun loving person always dashing here there and everywhere, to someone who has slowed down, walks a bit but has this horrid disease that has taken quite a lot away. The children don’t really know any different, which in someways is a blessing. Emma your kids sound delightful, as do your parents, you are truly blessed as am I J x
Similarly when I told my daughter I had MS, she asked me straight away if I was going to die. I explained no and the potential symptoms I would have and her response was “as long as you won’t die then that’s ok”.
When she told her teacher about me having MS the teacher gave her a hug. Daughter just came home puzzled as to why the teacher thought it was such a big deal but was happy because teacher was being very nice to her lol.
I explained that for some people MS is a very tough road and they can be very unwell and because teacher doesn’t know me, she doesn’t know that I’m doing well.
There are no secrets in our house at all. I’ve never had that kind of relationship with my daughter and have no intention of misleading her. She’s a smart cookie and she picks up on everything. We regularly have times where we have the same dream or I get an inkling to check on her during the day and she’s been sick or something. We spend almost 24/7 together and we live by ourselves so we’re a team aswell as mother and daughter. I felt that if I wasn’t honest about the MS, she’d be conjuring up all sorts in her mind about why I was going to the hospital etc.
At least she understands what might happen and also why some evenings I have to go to bed before her and rest.
It completely depends on the child of course, and their age etc. But nobody knows a child like their own parent so I don’t think it’s for anyone else to judge what is right or wrong in terms of how to deal with it.
My son’s biggest fear was that I would end up in a wheelchair. I was honest and said that was my fear too and I would do everything I could to stay healthy for as long as possible. I think when I made a good recovery from the biggie relapse then we both started to relax and realise that there is life with MS and we would just have to enjoy the good times and ride out the bad. I now use a stick and I thought he might be embarrassed by it but instead he told me how proud he is … That brought a lump to my throat …
My sons school have been great they keep me informed on how he’s been fortnightly and no manager concerns. His school each year give the pupils a chance to win a weeks holiday to a caravan park. They have 8 in total and Kyle won this year, he’s been on a high ever since as he’s never won anything big before. So the first week at Easter were having a wee holiday it’s just what we need. Polly x