Hope everyone had a lovely time over the festive period and you aren’t too tired – I know I am!!
When Matthew started school I thought I would be less tired, but I’ve realised it’s not just the physical work involved with looking after Matthew, it’s the total mental exhaustion! I don’t think it’s exclusive to parents of children with additional needs either. Does anyone else have constant thoughts and to-do lists in their heads?
I have lists upon lists of things that need to be done or remembered, and every time one is crossed out another goes on the bottom. I can’t think “I’ll do that another day”, or “I won’t bother doing that” – as soon as a thought pops into my head of something I need to do it goes on the list and stays there until I do it, the whole time going round and round tiring me out. I jump out of my skin when my husband comes in the room and he always asks who I think is coming in? It’s not that he surprises me he’s in the house, it’s that I’m always so deep in thought I don’t notice him until he speaks! Or, he’s right next to me and I jump out of my skin!
What’s in my head today? Call Granddad, order peanut roll for Matthew, laminate Makaton symbols, do spellings with James, order new prescription, text people back, look into swimming lessons, sort trial of a walking frame, buy a birthday card, go food shopping, phone carer’s allowance, mop the floors, iron the clothes, get James another school jumper. So many little things that don’t seem much – but they tire me out!
It’s not like once I’ve done these I can relax as more keep coming! I clench my jaw all night because I can’t shut off.
I have this constant need to be organised and not forget anything. I’ve always been a bit like that but now it’s soooo much worse!
We’ve just moved house to a bungalow and have started talks with the OT about adaptations which is very upsetting (and tiring again!), and then there’s all the decorating and things we need to do to make it our home and not someone else’s.
This means spending a lot of time in IKEA at weekends, and then comes the guilt that I’m not doing physiotherapy, or speech therapy, or anything with Matthew – it’s all just one big tiring headache!
I need to do some sort of yoga or mindfulness therapy, but there’s just not enough time.
If anyone has the secret to actually switching off, please share.
A Blog by Lucie Gregory.
Being Matthew’s Mum … at Christmas.
Matthew was Joseph in his nativity at his (non-mainstream) school today.
I wasn’t sure what to expect, but it was actually really lovely seeing all the children getting involved in ways they were able. However, it did make me think back to when James was in his first nativity at nursery and in reception at school and he was all excited for Christmas. It’s quite hard that Matthew is four years old, but he has no idea what Christmas is or who Santa is or what is coming up.
He’ll have a lovely Christmas day I’m sure because he loves being around people and we’ll be seeing lots of family, so he’ll be happy and excited. But I wonder if he’ll ever feel the anticipation and magic of Christmas like James does and have lovely memories?
I’d love him to be sending a list to Santa, dancing around to Christmas music and finding it hard to sleep on Christmas Eve because he’s too excited. I would love that for him. I am trying to stop being too negative about it all because he’s a very lucky boy who will get new toys and lots of lovely food to eat, and friends and family to fuss over him – even though he won’t know what’s going on he’ll be happy.
There are so many families ‘out there’ who have lost children, can’t have children or children who don’t have families or families who can’t afford to spoil their children at Christmas. Some people will be spending Christmas in hospital with their children – it’s not always the most wonderful time of the year for everyone. So I need to count my blessings and focus on the good things and the happy time we’ll have despite everything.
Although it may not be the experience I thought I’d have with him at Christmas (at this age), I need to readjust my expectations and get used to this new normal. I’m terrible at comparing and wondering why we have it different. I must stop thinking we’re different and just get used to our way of life, and concentrate on one day at a time.
All I want for Christmas is for everyone to be happy and healthy…oh and a new pair of boots! Enjoy your wonderful children and amazing family and all you’ve achieved this year, you’re doing a great job.
Merry Christmas xxx
Being Matthew’s mum…
I will be posting regular updates on this page to show others the reality of what life is like being a mum of a child with disabilities.
I’ll share the ups and downs and the laugh or cry moments. No filters, just the honest truth about this new world we live in and how we’re travelling through this journey. Hopefully, others will relate to some of the things I say and know parents ‘out there’ who feel the same way.
Just for the first one, I’ll talk about our story, but the rest will (I hope) be an interesting, and sometimes maybe even entertaining, read!
Matthew was born one week overdue, a fast but normal delivery. He had a very large fontanelle but the doctors said not to worry, it would just close. All other standard tests they do when you first have a baby came back fine – we went home with a happy healthy baby boy, a little brother for our son James.
You get through the newborn baby stage (which I find horrendous, to be honest), the sleepless nights and the feeding and the crying…not easy, but we survived!
It was only when he wasn’t doing things like the other children that I started taking him to the doctor. It was always the same advice – don’t worry, all babies are different. It was a hard time trying to get someone to listen.
Eventually, they did listen and sent him for an MRI scan when he was about seven months old. I still didn’t really believe they’d find anything and like a picture we have up at home now by Banksy saying “there is always hope”, I tried to keep positive while we waited for the results. Then one sunny afternoon in June, I was in the playground with James and Matthew and I had a phone call.
They had found something on Matthew’s MRI scan, which they called nodular heterotopia. I didn’t know what that was – I didn’t have a pen, I was on my own, the paediatrician who called me didn’t know what it was and said we’d have to wait to hear from the neurologist.
After lots of phone calls getting us nowhere, we had a summer of three months with no support, advice, help or answers, until we saw the neurologist at the end of September.
She was not a personable doctor. She showed us photos of Matthew’s brain scan (while I have tears streaming down my face) talking in very medical terms. She couldn’t tell us what it meant for him or his future; we’d just have to wait and see what he’d be able to do. Then she said our time was up and we had to leave the room as she had another appointment waiting.
That was the worst year of our lives…
Skip to today when Matthew is four years old and I have been bringing him to Footprints for almost 3 years. They’ve helped us so much – we have no family living in the area, and it’s been a long hard road since Matthew was born.
This place means more to me than they probably realise. I started volunteering in their offices nearly a year ago and help with the admin and anything they need. I have done some fundraising and got lots of people involved in helping the charity.
It’s become a bit of a passion of mine to help them as they have helped me. I’m not saying I now find things easy, there are still very difficult times and I never thought my life would be like this.
No-one can predict the future and everyone has good times and challenging times, no matter what. We’re getting through it, making the best of things and enjoying Matthew’s infectious smile and amazing personality.
I’ll use this blog to share stories and information I may have found useful. I’ll share the funny moments and probably the sad moments too.
I hope you enjoy reading it and I hope I make at least one person feel better about their situation.
Thank you, Lucie x
Footprints Conductive Education Centre is a small charity based in Nottingham.
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 firstname.lastname@example.org and it will be forwarded to her.