In this #SecretLifeOfUs blog, Lucy talks about her challenging feelings associated with Christmas as a parent in a family with additional needs. Lucy sends a message to other parents in a similar situation – if you are struggling or under pressure, you’re not alone.
I don’t know about you, but I have to admit that I am struggling.
Don’t get me wrong, I love Christmas. I love that this time of the year brings the opportunity to escape (even if only for moments) the ups and downs of the year that has gone before and lose myself in hypnotic light displays and the anticipation of glitter-coated-twinkly-stared loveliness.
But today and for many days leading up to and during the festive season, I struggle.
As with many parents, Christmas is a time where I want to give my children and family the best possible experience of the festivities. But as a mum of a family with additional needs included, probably the biggest stress for me is the worry of ‘getting it right’, ‘making it perfect’, ‘making memories’ (just in case).
When a health condition forms part of the fabric of family life, uncertainty about the future brings enormous emotional pressure to any occasion or event and Christmas is no exception. As a family living out our youngest member’s diagnosis with him, all impacted by it in different ways, it becomes really important that these special times of the year are special for everyone. And as unrealistic as that sounds, the responsibility to get this right weighs heavy on my shoulders.
So there comes a point during the run up to any special occasion when I start to feel the pressure build and an inevitable struggle follows when I simply can’t maintain my own idea of what a perfect day should look like.
The bizarre irony is that, in my life and especially since I’ve had children, the best, most memorable moments have been the unplanned, spur-of-the-moment ones.
I remember a time when my youngest was recovering from surgery in hospital and was failing to eat, as is our normal nightmare. My husband brought our other two children into visit and on their way they collected takeaway from a local favourite restaurant: we drew the curtains around our son’s bed and we all ate and ate and ate, giggling away to ourselves about how weird and garlicy we must have seemed to everyone else on the ward.
And that is only one example of the many different, off-the-cuff moments that have become the most wonderful, long-lasting family memories.
So, sitting here again in mid-December writing lists and feeling just a little bit panicky, I wonder why, yet again, I tie myself up in knots trying to organise everything perfectly? Why do I do it to myself?
And the answer is simple: because I have a family who do their best all year round to manage the various challenges that come our way and I want to take any and every opportunity to spoil them, that’s why.
Having a child with additional needs reminds me every day how valuable life and family are so maybe I strive for the perfect day because, when the rest of the year can be so intense, I need to believe that there is one day that can promise that perfection we all desire. But I know I have to accept that, when I am stressing and panicking about making perfect memories, I am probably directly working against myself to achieve just that.
While it is good and necessary to be organised and prepared, as the day to day of additional needs life can’t stop when the holidays come, I need to remind myself that spontaneous moments bringing joyful memories will still come, as they have come before and will come again. And I need to find peace with relinquishing control over when and how they will happen.
So, I am going to (try and) tell myself this year, right now, to slow down, stress less and let the season happen. God only knows that my son, his siblings and my husband and I need a break from real stress let alone the self-induced variety.
So, if like me you are starting to struggle, join me as I try to take a breath. Let’s remind ourselves that we already have pretty amazing and resilient families, and one day, whether perfect or not, is not going to change that. If you are feeling stressed and emotional then know that you are not alone, it is OK and normal to feel this way and be reassured that this feeling will pass.
Breathe, reset and have a really merry Christmas (whatever that looks like for you).
If you would like to join the Disabled Children’s Partnership campaign network, and help us create a fairer society for every family with a disabled child, you can sign-up here.
We are always looking for parents and disabled young people who are willing to share their experiences and stories through blogs, videos, events and more. If this would be of interest, please do fill out this form as well and a member of the team will be in touch with any opportunities