Guest post 2: Myasthenia and the challenges of raising a child

Guest post by Lucy Whitaker

In her last post Lucy wrote about being pregnant, giving birth and raising her son Jacob. Now she talks about

Our life

 We have quiet time with snuggles, blankets, hot chocolate and Disney movies and although I try to throw a new one in the mix from time to time, Frozen, Minions and Toy Story take the centre stage. 

We read stories together, taking it in turns as when my voice tends to go he definitely makes more sense reading.

 We have picnics, which he cooks for me in his kitchen, and we take the food anywhere in the house or outside when we get a dry spell. 

He likes to do his fixing with his workbench, and he uses the help of Woody, Buzz or Jesse at times…even Lemur lands a hand. 

Mummy is sick 

He knows mummy is poorly, as I have a pic line in so that’s an obvious clue and he can see where mummy gets her magic medicine, like his calpol.

 He has seen me in hospital and he knows mummy is okay as all the nursing staff are great with him, so he feels comfortable. So comfortable that he loves running around and recently found the bed control! 

He has not had many disruptions to his routine whilst I’m in hospital apart from me not being there and we’ve worked it so that I’m just gone one night every two weeks. 

The guilt and heartache does occasionally creep up on me. No mother wants their child to have to go through tough times, let alone having to deal with an ill parent who can be good one day and not so good the next. 

My family have all said that he’s known even from a babe in arms that mummy has restrictions, as he wasn’t a demanding baby and even now he’s not so much. I guess I’m lucky in that respect and just have to remember how precious he is so I’m not torturing myself or comparing myself to other mothers. 

Hard choices

It’s the time that I spend with him that is so precious and important to us. I felt like I had no control when my MG has been so aggressive. 

Having to make the decision of nursery was one of the hardest things for me as I didn’t want to be without him – I wanted to hold him all the time as I couldn’t do much else and all I wanted him to know was that I was always there. 

It almost felt like I’d failed as a parent; I kept torturing myself by thinking I was letting someone else look after my child. 

Ok, in a way I was but that didn’t and doesnt make me any less of a mother. I guess because I wasn’t back at work I felt like I didn’t have an excuse to use. Although it’s not an excuse, it’s my illness…one that at the moment is putting so many hurdles in the way of everyday living and is creating a learning curve to find out what’s best for us. 

I am so grateful for his childcare as its where he is able to make friends, get messy, learn, sing and dance and generally be able to play all day. What more could a child want to be doing everyday?

 I made the decision to put him in for a few days so that we both benefitted from it – him in his growth and development and me in my resting so I can have those precious moments of bath time and read him his bedtime story. 

We have play dates, just not every week due to the childcare or times when mummy may be having a tough day. So sometimes we don’t get asked again because we’ve rescheduled a fair few times. 

Looking back though, even though I had no choice due to being restricted, I couldn’t be selfish and hold him back. I look at him now and how he interacts and plays with his cousins and other children and I just beam with pride, as I know it was the best decision for us. 

Read Lucy’s earlier blog on finding out she was pregnant.

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