Spoonie Parenting

Thursday Thoughts: Parenting with Chronic Illness is Hard

Today’s a bed day. The kids are at school, my husband’s at work and I am trying to summon the energy to go make some breakfast…. but I have none! Yesterday was full of work, a school musical and having my in-laws over for an evening meal and my body just can’t hack it. I desperately try to stay ‘normal’, taking part in activities that people without illness can do easily but I can’t, and I find it completely frustrating. I’m jealous of people who have seemingly never-ending energy and the lives they appear to lead. Facebook has a lot to answer for – nights out? Weekends away with friends? The ability to be there 100% for their kids, taking them to school, extra-curricular activities and just being a, well, present parent.

I want to be that person but I can’t always, and I know my children notice. Just this morning, before school, my little boy came to see me whilst I laid in bed and said, ‘I haven’t seen you yet today, why not?’ I feel frustrated that I can’t summon the energy just to fake it and wave them out the door. I hate the fact that my husband has the responsibility to make their packed lunches, ensure they’re dressed and take them to school on time. My son is showing more of a tendency to go to his father to tell him something/ask him for something and I have to say ‘I’m here to listen too’.

Parenting with chronic illness is hard. My kids are thoughtful and accepting of my difficulties, but that doesn’t mean that I have fully accepted the fact that I can’t be everything for them and that I have to rely on others so much. I want to be able to put myself last so that my kids can have a full parent in me, not just the part time one they’re lumbered with at times.

I have written before on my thoughts about parenting with Multiple Sclerosis, and my sensible head knows that I am enough for my kids. But that doesn’t stop me feeling guilty or having self doubt at times. And I know that appearances can be deceiving and that just because people look like they’re coping, doesn’t mean they are, chronic illness or not.

I’ve been looking into Young Carers support for my kids; they might not realise it but they care for me so much. They come shopping with me, holding the basket because I can’t due to my crutches and when we (inevitably) buy more than we intend, they are the ones who carry the heavy bags out to the car. They do their school reading in my bedroom, so I can lie in bed whilst listening to them. They bring me cups of tea, my daughter gives me massages and they tidy their rooms with the knowledge that if they don’t, I might trip. I believe Young Carers support is all about giving them the chance to have time away from the illness and also provides them with the opportunity to chat to others who may be in similar situations. So my plan is to call the council to discuss what might be available for them. Watch this space and I’ll let you know if anything comes of it – I would also love to hear if anyone has used the Young Carers service before.

I guess part of coming to terms with my Multiple Sclerosis is realising that parenting is going to look different for me compared to other, more able- bodied, people. And that’s ok. I might have to be in bed listening to my daughter read, but I’m still listening. I will always be here and listen to them, even if I can’t physically always do the things other parents can. The number one thing children need is love and I can give that in spades.

Thanks for reading my thoughts for this morning… I’m finally going to get that breakfast!

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Cover Photo by Sebastian Pichler on Unsplash

16 thoughts on “Thursday Thoughts: Parenting with Chronic Illness is Hard

  1. My goodness, this speaks to me! I am disabled with SPMS. I have a five-year-old, who has her own problems, and now I can’t even get from my house to the car in order to pick her up from school! My husband is an amazing man and I am so grateful for all that he does but he is, effectively, a single parent. I just share the house! It’s heartbreaking. Much love to all who are battling the same battle.

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    1. Thanks so much Sue, I also have SPMS – I believe we are in the same groups on FB but I haven’t been on in ages? Struggle to keep up with it all now, especially because I am still at work (thought I am aware that medical retirement is imminent). It helps me to know I’m not alone either x

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  2. Aw Jen. It’s so flaming (trying not to swear!) tough isn’t it. I struggle so much with not being able to do everything I want to with my son, and having to rely on the help of others. I know I often look “normal,” doing “normal” things, but there’s so much involved in doing those little bits. I came off my personal Facebook a few years ago, and although in lots of ways I miss out on keeping in touch with people, I find it easier to not have to worry about what everyone else is up to! You’re right in saying it’s just our parenting will look a little different to others. We just have to remind ourselves to be ok with that – note to self! Thank you for such an honest and touching post that I really identify with xx

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  3. Everything you said, I’ve said to myself over the years. It gets easier as the get older. I can say that. I did hear too many times but mommy can’t do that. It was tough but I still have a wonderful daughter and I’m sure you have wonderful kids that see a mom who is so incredibly strong. That is a trait most moms can’t teach.

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      1. I think in a way it brings up a more caring and understanding child. I use to feel the same way but she was always loved. That’s what they ultimately need.

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  4. I’m with Joann I can’t even imagine how I would have managed with small children. My son was still pretty young but old enough to be able to to a lot for himself. I have so much respect for you and all the mothers raising small children while living with a chronic illness.

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  5. When my kids were younger, I used to really beat myself up about “not being there” and having to have them help ME all the time (not saying I still don’t wish it had been different) but I have two incredibly strong, independent, and compassionate young woman now. ( 20 and 26) So maybe there is a blessing in that. I will tell you that you are correct in what you said about “The number one thing children need is love and I can give that in spades.”

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