The most wonderful time of the year

Blogs are like buses aren’t they? You don’t get one for six months and then suddenly two appear right after each other – at the busiest time of the year as well, sorry about that. But just as there is one dry subject to talk about (ECHP yawn) there is also one that is so filled with loveliness, it must be documented. It is a bit of a self-indulgent blog, but it is Christmas, so I hope you will let me off.

Ah yes. Christmas! The most wonderful time of the year. So much excitement, so much anticipation, Christmas fairs, brass bands on the street, visits to Santa and the panto, endless chocolates and sweets, back to back parties and lots of and lots of presents…it’s such a happy, joyful time!!

Apart from it really is not for many parents whose children have special needs. For those parents and children, Christmas represents an often confusing and stressful time as children struggle with the sensory overload, hectic, loud situations, strange foods and lack of general routine.

Marigold seems to have an understanding of the concept of Christmas and is very excited about it. Her understanding probably isn’t that of the typical present-obsessed three and a half year old. And this is actually a wonderful and innocent thing. She enjoys the Christmas music (especially singing songs with Tracey and Suzanne from Singing Hands) the lights, the decorations, chocolate and reading Christmas books. She is very excited to give people presents and cards and pretend to be a reindeer with sleigh bells in her ballet lessons. She has quite an extensive festive vocab range and can sign Christmas, bells, reindeer, star and Santa, amongst other things.

She doesn’t however, respond well to big, scary random Santa’s approaching her in the shopping precinct. Definitely not. Nor people dressed up as Olaf from Frozen who want to give her warm hugs. Or the school hall suddenly being set up differently for the winter fair. That is not acceptable and will invoke the mother of all meltdowns.

So it is fair to say that Christmas, whilst magical, is always tinged with some anxiety.

A first nativity play is always a special moment in a parent’s life. I was brought up doing traditional nativity plays at school in the – ahem – 70s and 80s – and selfishly I really love to see my own children do the same as it makes me feel all misty and nostalgic, which is surely what Christmas is about. But as Marigold’s preschool nativity approached, I started to feel a bit anxious, and a bit sad. When they first went into the church hall for rehearsals she did NOT react well. Big halls are her nemesis – so much space and sound distortion. She eventually got used to the hall after a few rehearsals, but I wondered how she would react when she was sitting on a stage with fifty adults gawking at her. I felt it was inevitable that a swift exit would be required and a sense of early disappointment that I would not have the same nativity experience as other parents.

But it is important never to project behavior onto our children, whoever they are. They will always surprise us.

I will never forget the sight of Marigold dressed in her little white dress with her angel wings and tinsel headband running through the doors to the church hall so excited to see us, and the genuine “Aaaahs” from everyone around us at how adorable she looked. I will always remember how beautifully she sat with her keyworker, through several carols, readings and the play itself, when a lot of the other children around her were running riot! She didn’t sing the songs, but did all the actions. I especially loved the way she clapped herself after every song as if to say “Well done me!” It was one of the most wonderful, magical moments to see her with her peers, being included, being happy. This will always be one of my greatest Christmas gifts.

I wasn’t sure whether I should write this blog. It was such a special, personal moment which I wanted to keep to my friends and family in many ways. But I also wanted to show parents going through similar journeys that for all the hard times, the relentless appointments, the hospital admissions, the illnesses, the EHCP frustrations and the endless worries about our children, there are also moments of pure magic.

There will always be a special place in my heart for the staff at Marigold’s preschool who worked so hard to create such a lovely memory for us all. And for those of her little friends from her classes this week who have bought her presents. For everyone who makes such an effort to make Marigold feel so special and included, thank you. I hope every other Unique parent might have their own special Christmas moment this year, amidst the challenges that we know the season can bring.

Unique is a charity that aims to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder.

4 thoughts on “The most wonderful time of the year

  1. I came across your story on 24 Hours in A&E.
    I was born with Spastic Diplegia, and I’m always interested in medical conditions, so when they mention a condition I don’t know, I tend to look it up. In doing so, I found your blog.
    I just wanted to say hello, and just wish you luck. You seem to be doing an amazing job, and I know it can be overwhelming, and sometimes, a little bit of a friendly word can help. I hope things continue going well.


  2. Have just seen your beautiful angel on 24 hours in A&E and coming from a medical background I started researching her condition and came across your blog. I never noticed that she was different from any other child, she is beautiful and will reach her goals in time. You are an amazing mummy. My little girl was born November 2014 so they are of similar ages. I hope she keeps getting better and that she achieves all her hopes and dreams. Love to your family.


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