Many of us find Christmas an emotional season for all sorts of reasons. Gathering with distant family, catching up with old friends, watching our children perform with their peers in school plays or seeing their little faces as they meet Santa. Then there’s the burnout and tiredness as we try to squeeze just one too many social events/ mince pies/ mulled wines in, not to mention the stress of how we fund it all.
But when your child has additional needs, I find that the emotional rollercoaster is even more pronounced. For me, Christmas is always a marker in time. A yardstick against which I gratefully see how far my children have grown and developed in a year. It’s also a time to look back and reflect on Christmases past, and for us that includes humbly recalling the time, 7 years ago, when we were spending 10 hours a day with a baby in neo-natal care whilst trying to maintain a normal home life for her 2 year old sister. I remember the machine bleeps, the bin lids closing, the worry, the shock,the endless expressing, storing and labeling of breast milk, the knitted toys donated by wellwishers as if it were yesterday. Then the greatest gift of all, when we were allowed to bring our fragile family member home on Christmas Eve.
Some years I have watched little Natty’s face lit up with tinsel and tree lights wondering if she would one year understand what it was all about, if she would be able to say the word ‘Santa’. Other years I have marveled at her hard won achievements, or breathed a sigh of relief that a medical hump in the road had passed smoothly and was safely behind us.
In the past Natty has become overwhelmed with the festive traditions and celebrations, but as with all aspects of life with a child with a learning disability, we have learnt to adapt and do things her way, calm things down and present them in bite-sized chunks she can cope with. She thrives on the learning opportunities provided by the sensory selection available at this time of year if we pace it right.
This Christmas, however, brought fresh emotions that I wasn’t ready for, as Natty was cast as Mary in the school nativity. Tears and a rush of pride overcame us as she beamed from ear to ear when we were told. It was a role made for Natty, there weren’t many lines and she could take centre stage and hold the much-cherished doll.
Those around us cooed and ahhhed, but I found myself sobbing when alone every time I pictured her leading role. It took me a couple of weeks to fathom that mixed in with my tears of pride, there was a fear of facing up to the fact that watching her play the most celebrated mother of all, Mary, was a symbol to me that she is unlikely to ever have children of her own, not least because of fertility issues. In some primitive place in my soul I was grieving for her and me.
I knew that one day I would be faced with explaining, in terms she understands. I will have to break the news that she might not experience the priviledge of parenthood as her sister is likely to. It was this that broke my heart and I prayed that this realisation won’t crush her and that being an amazing aunty will bring joy and fulfillment.
The big day came, I shook with nerves, so determined not to make a fool of myself or Natty from my undersized plastic chair in the school hall. I packed wadges of man-sized tissues and a pair of sunglasses just in case.
Of course, Natty, in true star fashion, surprised us all again. Her performance was taken so seriously and yet done with a very definitely intended touch of comedy, that I found myself laughing and smiling in disbelief. How many Marys have you seen tell the audience off for standing up, or laughing? How many had a nasty bout of sciatica and held their arched back in pain as they travelled to Bethlehem? And how many did a wiggly dance of joy complete with jazz hands at Jesus’ birth?
Yes I shed a little tear, no more and no less than the Mum next to me, but it was of pride that she had learnt her words and those to all the songs. I smiled at how grown up she looked, how beautifully homemade her costume was. I adored the sibling love I witnessed as Mia sing with her and clap the loudest. I mused that she was part of a beautiful inclusive production that would have been denied her many Christmases ago.
And as her friends sang ‘Mary, Mary, we will look after you.’ I think I thought I saw the future for one fleeting moment, a glimmer of hope for a set of peers that truly does look after each and every one of its own. Natty has taught them well.
And she had taught me well too, for in that evening I learnt once more to live in the moment, enjoy every day as it is lived to the full and not to fret too much about a future that none of us know for certain.
Have a wonderful, warm Christmas filled with love, for that is all you need.
Hayley
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She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
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Fantastic post, Hayley, thank you and Merry Christmas! Tania
Thank you Tania. And to you and yours x
This brought tears to my eyes. Have had similar thoughts myself – but as you say, quietly, in private, never spoken aloud, in the knowledge that people would brush it off (trying to be helpful) saying, ‘oh, you never know what will happen in the future’. I don’t like to dwell on the things that may not happen anyhow – like you, I’d rather just celebrate the positives. I can just imagine those jazz hands and they brought a smile to my face 🙂
Yes, the positives are so wonderful and I feel silly looking too far ahead. But yea, we all do it, and guess what… it’s natural and because our hearts are filled with love that we do. Happy Christmas darling Steph. H x