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!

Cover Photo by Sebastian Pichler on Unsplash