Being Matthew’s mum of two

When Matthew was a few weeks old (and before we knew anything was wrong) I found I was struggling. It was hard coping with a newborn and a toddler all [...]

When Matthew was a few weeks old (and before we knew anything was wrong) I found I was struggling. It was hard coping with a newborn and a toddler all day, every day, on my own.

I hadn’t slept for more than 30-40 minutes at a time, and I hadn’t been out of the house hardly at all. We were invited to a 40th birthday party (during the day), and I was feeling anxious about going. What if Matthew screams, what if he needs feeding, what if his nappy leaks, what if he won’t fall asleep … I wasn’t very relaxed about it!

The birthday boy was one of three brothers. His two brothers got up to make a speech, and they were telling stories about their childhood, funny anecdotes about what they used to get up to and the fun they had together.

I imagined James and Matthew playing together when he got a bit older, running around playing in the garden – getting up to mischief, playing pranks on each other, having secrets … although he was only tiny, I could imagine how good it would be watching them grow up together.

I didn’t want James to be an only child; I wanted him to have what I have with my sister. I know not all siblings get along, and half the time the parents are referees to their constant squabbling.

James said to me the other day that he wished he could play football and Lego with Matthew.

He isn’t an only child, but he doesn’t have a sibling to play with. Don’t get me wrong, they love each other, and James does play with him; we have lots of laughs and games together. However, I think James feels like he’s missing something – he asks for friends to come over after school and at weekends to play.

There are plenty of children who are an only child, and some siblings have such an age gap they wouldn’t want to play the same games or have the same interests. It’s hard having two children when they can’t talk, play, or even squabble with each other.

I worry (here I go again) how it will affect James when he’s older. At the moment he’s happy; he’s having a lovely childhood (I hope!), and he has lots of friends to play with.

I don’t want him to feel when he’s older that he has to look after Matthew to give us a break, or because he feels he has an obligation. It would be nice for us, and I know he would do it because he loves him, but I want James to live a full life and do what makes him happy – whether that be travelling, university, moving away or getting married. I don’t want him to feel guilty and feel like he can’t follow his dreams.

It’s worrying what will happen when we (me and my husband) are no longer around. I know it’s (hopefully) a long way in the future, but he won’t have a sibling to share the grief with, he’ll have a sibling he’ll be responsible for.

James is making friends with siblings who have brothers or sisters with a disability, so I’m hoping those friendships will be strong and lasting, and that they will all be a good source of support for each other. I know this is all waaaaaaaaaaaaaaaaaaaaaaaaay in the future, and I wrote previously about living each day at a time, but it’s not always possible!

They are only four and seven years old: James’ biggest concern at the minute is what we are having for tea, and Matthew’s is whether his iPad is charged up!

Going to Footprints helps us both, so if (like me) you’re a worrier with a pre-school age child that has additional needs, do get in touch – they empower parents and give them the support they need too.

Footprints Conductive Education Centre is a small charity based in Nottingham.

To find out more about their work visit and to see how you can support them, please see their ‘support us’ page

They make such a difference to the lives of children with disabilities AND their parents and families – it really is life-transforming. If you are a company seeking to support a local charity making a difference in the local community, please get in touch. They need £200,000 every year to help families like mine.

*Thanks for reading Lucie’s blog. If you would like to contact Lucie, please email and it will be forwarded to her.



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