Chronic illness and kids – dealing with mum being ill

One of the biggest sources of my guilt and having IBD is my kids, I feel so sad that they have a poorly mum who they see in bed so often. They’ve visited me in hospital more times than is right for a child and they cope with it phenomenally.

Today I’m feeling pretty sad and I wanted to talk about my baby Thom. He’ll kill me for saying that as he’s a teenager now, but he’ll always be my baby.

I was diagnosed with ulcerative colitis before Thom was born and so all of his 13 years have been with a sick mum. He had dealt with this from conception as my IBD went into overdrive when I was pregnant with him.

During my pregnancy, I spent months with diarrhoea, stomach pain and bleeding. As I should have been concentrating on growing his wonderful little body, I was dealing with my own illness. It felt as though my body was jealously fighting for my attention, there were times when I should have been revelling in his kicks and watching those little charts to see what fruit item he was the same size as this week, and instead I was hospitalised and having blood transfusions to keep my own body strong enough to just keep us both alive.

He was born 9 days late and weighed an amazing 11lb!! I like to think that was his first little ‘fuck you’ to IBD, that he was staking his claim saying ‘this is MY mummy and we aren’t letting you win!’

Throughout his life, I’ve had 6 surgeries and many more hospital stays, there have been so many weeks where I haven’t been there for him and this breaks my heart.

He has learnt about my illness and is such a kind and understanding young man, every day he asks me if I need anything, can he do anything for me. He sees past my scars and ostomy bag, blind to any add ons and just sees me as mum.

Today I wanted to treat him, he’s on school holidays and as I work full time I’m never about during hols and so as Timm is at work and the other two kids are at school and college (different cities/different school holidays- why yes, that does make life a nightmare!!!) I thought I’d take him to the cinema. I still can’t drive, but we can get the train from our village straight to Meadowhall and I thought I’d be strong enough to try it.

But my body had different ideas, I dressed and we got out of the house but then my bag started to leak. We’ve come home and I cleaned myself up but now I’m struggling. And so the trip is cancelled.

I feel so bad.

‘Im sorry Thom Thom, I just can’t manage it’ I said to him, knowing that he’s heard these words too many bloody times in his life.

He didnt complain. He didn’t sigh or roll his eyes.

He looked at me with love and said ‘mum, it doesn’t matter, go and lie down, I love you’

This boy of mine is a gem, he never complains, he never gets mad with me, he takes it all on board and smiles. He can adapt to any situation and knows that last minute changes of plan are just one of those things.

I love him so much and I feel so lucky to have such wonderful, kind and compassionate children.

My illness brings a lot of stress into our lives, it brings my kids issues that I hate them having to deal with, but I also think that it has made them empathetic and deeply kind. They understand other people’s struggles and deal with it without drama or theatrics. They have a sense of humour and a sense of perspective way beyond their years.

And do though I often feel guilty when I can’t be like other mums, I also know that being the mum I am has brought positives to them that outweigh the negatives. And I’m a very lucky momma.

Sam xxx