‘You’re really good at taking care of us, Mum’.  A simple sentence, but when my little boy said it to me after he fell and cut his leg, I felt absolutely amazing.

The number of times I’ve felt like a crap Mum, because I can’t run around with my children any more or because I’ve made them pasta for tea yet again because it’s the easiest thing for me to make, is in its hundreds.  I guess it is all part and parcel of being a spoonie parent, due to my Multiple Sclerosis.  But my son’s comment just goes to show that the simple act of having a pack of baby wipes so that you can easily wipe off dirt and gravel from your child’s scuffed leg is what really matters to them.

I think every parent feels the ‘guilts’ and I have written about it before.  But even though I’ve written about it, I still feel it, so hearing that one sentence from my nine-year-old really helped me realise what the important parts of being a parent are.  And I have realised that I do them every day, despite my MS, by:

Showing them how to enjoy the little things 

Such as playing a board game, watching a movie together or sitting around the dinner table, talking about what happened during the day

Providing comfort

I am still quick to give my kids a cuddle if they’re down or hurt and I know that the little ‘routines’ we have for them help to keep them content and happy, such as Friday night pizza night and cuddles before bed.

Really listening

I remember reading the quote, ‘if you don’t listen to the little things, then children will not come to you when they’re older about the big things’, and it’s really stuck in my head.  My little boy currently loves mine craft and other building Xbox games and often asks me to sit with him while he explains to me what he’s building.  It might not be the most interesting thing for me, but I love the fact that he actually wants me to be there with him at an age where he is starting to not want to be seen with his ’embarrassing mum’.  My daughter was talking to me about being left out of a game at school and, although I felt sad for her, I was also glad that she felt she could come and speak to me about it.  I know that I feel better when I get things off my chest and I’m happy to be a sounding board for my kids.


Modelling how to say ‘sorry’ 

From a personal point of view, it’s very hard work having a disease like multiple sclerosis –  hard for me and for loved ones.  I’m not always in the best mood when I’m around my kids or my husband and have been known to become ‘shouty mum’ if I’m feeling particularly frustrated.  However, something that I really try to do if it happens, is apologise to them and tell them why I was upset and that it had nothing to do with them. I explain to them that having MS sometimes gets to me, because I can’t do as much as I want, and that the frustration comes out in my mood.

Enjoying the everyday

My kids are seven and nine now and with that comes exhausting social lives (them, not me!) with lots of out-of-school activities and busy weekends.  Quite often at the weekend family will help me when my husband has to work, which means I don’t always see the children for the full day.  However, I know that when they are home, they are guaranteed to have me with them for the ‘mundane’ activities that we do every day – and in fact these ’mundane’ activities are often the most enjoyable, such as book reading before bed. This gives me the chance to chat to my kids about how their days went and is the one time when my little boy is happy for me to give him a cuddle and a kiss (my daughter has fortunately not grown out of it yet!)

Providing reassurance

Life isn’t easy and children are just learning that.  Whether it’s a falling out with friends or homework that just too difficult or a school concert that they’ve been asked to take part in (but they don’t want to), I see my role as encouraging and reassuring the kids to try their best and embrace new experiences.  I find that my kids really listen to me if I talk about times when I was nervous or afraid but come out the other side.

Showing them how to laugh

I often wake up with the biggest Russell Brand hair you can ever imagine, but I try not to moan about it. Instead, I will point it out to my kids and talk about my ‘mad’ hair. Other times I will do a silly dance move or make a silly song up in order to make them laugh and to not take life too seriously.

Encouraging them to find their own way

I can’t do everything that my children can but there is no way I would stop them from ever doing anything that they want to in life. Okay so I need to be the parent to make sure that they are making sensible decisions while they are children, but if they want to go and live on the other side of the world as an adult then I will wish them the best and try not to be too jealous!  Just recently my little son started struggling with the amount of swimming that he is doing on a weekly basis, but when it came down to deciding whether he wanted to continue or not, that decision was completely up to him.  I could provide him with the information he needed, the positives and negatives, but as he grows up I am happy for him to take the lead on knowing what feels right for himself.

***

I may not be a perfect parent  but I can tell you one thing – my list doesn’t depend on a body that works perfectly.  Mine certainly doesn’t!  I can still give my children cuddles when all I feel like doing is sitting down and I can spend time with them by putting them to bed most evenings and enjoying my time with them.  Just today, I taught my daughter to finger knit and helped my son with his homework before catching up with ‘Bake Off’ on telly and making a simple tea (yes, pasta again…).  But you know what?  I might not find it easy to take my kids out for the day to explore the countryside, or a museum or even to go bowling, due to my mobility issues and fatigue, but it is enough.   I am enough.

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So, a massive high five to all those parents living with chronic illness who sometimes feel like their health is letting their kids down.  I can promise you, look at all you do do and then tell yourself ‘I am enough’, in every way.  Have a lovely Sunday. 😊

Jen 2<<<<<<
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28 Comments

  1. What a beautiful and heartfelt blog post! Thank you so much for sharing the challenges you face as a chronically ill parent but also for celebrating the positives too. You are a true role model, I love reading your spoonie parenting articles as I feel like I learn so much. I can only hope that a few years down the line I have the same great relationship with my son, despite my chronic illness. X

    1. Thanks Natalie 😊 And I take my hat off to YOU as someone who is dealing with MS whilst having a very small child. I had it, but no real symptoms until my youngest was a bit older than your little one, and I remember how much hard work it is, even without symptoms! Thank you so much for reading my post xx

  2. Aw, what a lovely post. Do you know as I was reading your article it made me think that us parents with chronic illness do the stuff that really matters. Those little things that are so important like listening, reassuring and simply just being there. I often give myself a hard time over pasta for dinner etc but in the long run that’s not the stuff that matters (note to self as I’m writing this!). You sound like the best mum and your kids clearly think so too 😊💜

  3. A major high five back at you Jen. I think this is great parenting with or without a chronic illness. It shows your love for your kids and that’s what matters.

  4. This is a great post and one that I truly relate to. Growing up, my mom suffered from a chronic disability that made it difficult for her to be the Mom she wanted to be or was expected to be. Both sides of our family tried their hardest to get us to hate her because of this, but when it came down to it she was the only one who truly cared about us and let us know it. Sure, she had issues, but at the end of the day we knew that we were more important to her than to anyone else and that she would always be there for us no matter what.

    Kids know your heart and they know your intention. She taught my siblings and I empathy and that’s something that everyone should learn. Your kids will be better off having a parent like you, I can guarantee it.

    Good luck to you and keep being an awesome mom! 🙂

    1. Thank you so much! It is so great to hear from someone who is in my children’s position and to hear the other side of the coin.

      Your mum sounds like she did a great job with you and your siblings 😊 Thank you for helping me feel like I am doing the right thing by my children and that they’re not losing out because of my chronic illness. ❤️

      1. You’re so welcome! I’m sure your kids will grow up to be great people with empathy for others and watching your strength every day will give them strength, too. 🙂

  5. Yes, yes, yes! I am sad that my 3 can’t really remember me without a stick, dashing about and jumping in the car – but they have grown into reasonably independent young people and I think that this is in part down to my surgeries and increasing disability when they were younger. I hate that they have to now help me and having your 21 year old son help you out of the shower is not ideal – but they have an open mind to illness and disability. We can only do our best and you are certainly doing yours xxx

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