Last reply 1 year ago
When did you tell your kids ?

So I have round 2 for lemtrada coming up in a few weeks. For round one I told my kiddies I was staying with Nanna rather than talking to them about anything. I didn’t want to worry their little minds :-(. I have always been extremely private about my MS which has caused me a lot of worry over the years and has probably made it harder. I look “fine” so it has in that way, been easy to hide.

My kids are 3 and 5 1/2 and i am always talking to my kids about being open about everything and talking about how they are feeling etc All the while I am hiding this and it’s eating me up !!

I have not spoken to them about it for so many reasons (mainly my 5 yr old as my 3 yr old obviously wouldn’t understand too much) probably denial, fear of others finding out – they tell total strangers EVERYTHING. By telling them this I will need to be prepared to have anyone we know then ask me about it 😬😬. But mainly because I want to protect them :-(. I don’t want them to be worried or fearful or feel like anything has changed :-(. I just want to be the perfect mummy to them 😪

So I’m just wanting thoughts and experiences if possible as I can’t get this off my mind. I know in my heart I just need to keep it simple and talk to them. It’s always going to be a part of our lives and I don’t want them thinking they need to hide it..

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1 year ago

@lozwo , here’s a booklet on this particular subject :-

1 year ago

Sounds silly to say but I haven’t told mine yet because he’s only 2.5 (he obviously wouldn’t understand) but I do tell him my arms are poorly if they’re playing up, or something of the sorts, and I tell him I need to go take my medicine to make sure I work properly. Hopefully with your lemtrada it should give you long term benefits so you shouldn’t have to tackle it too often, but I’m hoping to let my son know from as soon as I can and he understands that I have MS and am trying to let him see it doesn’t need to stop you doing anything. If I can bring him up with him seeing it as “normal” then he may not have as many anxieties with regards to whether or not he might suffer from it (though I hope to God he doesn’t). We’re lucky with them being so young they don’t understand the implications so they’re less likely to be scared and just accept it. Have you thought about telling them when you have your next infusion that you need to go away for a couple of days to have some medicine but not to worry, it’s just because you’re a special mummy and it’s to make sure everything works properly. It’s so hard when it comes to our children, you never know what to do for the best x

1 year ago

I told my kids the truth. I even told my nices the truth there younger than my children. My kids are ten and eleven. My nice outright asked me why I have a Walker and I decided not to lie weather she understood or not. I got a funny response like she came out with Ms that’s a stupid name for a illness lol. I decided I won’t lie to anybody kids included yes they may not understand but I have never lied to them and I decided it’s my illness and I’m not going to start lieing now just because I have ms.

1 year ago

@daniel2025 I completely agree. I want my kids to be totally honest and that means like all things – leading by example. These are life skills which will help them always ! I know I will feel so much better once we talk about it all. I want them to feel free to ask me questions. Just the other day when I was feeling upset about it all, my little girls words were “just talk to me mummy. You can tell me anything”. 😭😭😭.

1 year ago

Like you I always knew it would be better to be open and honest but always avoided the conversation- it really hasn’t done any of us any favours. I wish I could turn the clock back to a time when my children were little. I would definitely just bring it in to everyday conversation. That way they will ask questions if and when they want answers knowing you are fine talking about it. My children are 21, 18 and 15 now. We still don’t openly discuss it. I squirm inside if MS is mentioned in the news or TV programmes if they are in the room. Like you I am very private but I never intended it to be like this.

1 year ago

@lozwo, aw your little girl sounds gorgeous! Mine are a little older at 4 and 7 but I started talking to them about it at a similar age to yours.

I think you’re right to take the honest approach. I also think it should be a bit like sex ed – be led by them and give them the information they need that’s appropriate to their age. There’s no need to go too deeply into what it is or what the future might hold, at least not yet.

So I made sure that I talked to mine about the ‘soldier cells’ in their bodies that fight germs and whenever they were ill I would remind them that they needed to eat good food to give their ‘soldiers’ weapons and chill out so their ‘soldiers’ could do their work. I also bought some Giant Microbes which they love (their favourite is Penny the penicillin 😀).

So when I was going for my treatment I could say, you know I have a spaghetti leg that doesn’t always do want I want? Well that’s because some of my soldier cells have got over-excited and attacked bits of me instead of the baddies. So I’m going to go to hospital to get some medicine to get rid of my naughty soldiers. I will grow some new ones but it will take a while, so I’ll be a bit tired and will catch germs easily. You can really help by washing your hands carefully when you come back from school/nursery.

Or something like that anyway! Kids live entirely in the now so they just need, where is mummy, when is she back, why is she stuck to the sofa etc. Oh, and stories help too. Mine had Get Well Soon ( read to them a lot around that time.

Good luck x

1 year ago

My oldest was a lot different to that he decided to find out everything he could on the internet about ms and my treatment. He without any prompting says to stay away from him if he’s ill. My youngest is a bit mischievous when he’s ill he trys to rush near me and gives cuddles laughing about it but my oldest goes mad with him if he does that.

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