Celebrations: high and lows

Isabella Devani, a wheelchair user from Kent, UK, recalls the highs and lows of family celebrations as a disabled parent of two young children.

It may only be one day, but the build-up to Christmas now starts weeks before the event. My son’s birthday, falling in late November, extends the celebrations even further. Birthday and Christmas risk melting into one another, but I have learned to be prepared with presents bought in advance for both occasions.

Four years old is a difficult age for a birthday party. My son was too grown up for Mummy and Nana alone to sing Happy Birthday to him, but he was also far too young for most of the games usually played at a child’s party. One set of parents from pre-school hired the local church hall and entertained 20 under-fives for three hours by themselves. I expect that they are still recovering! My fatigue levels could not endure such a feat, but determined to hold a celebration, I booked a party for my son and four of his friends at a toy store in the centre of town. What I had not anticipated were the crowds that a Saturday not long before Christmas would bring into the city centre.

Fun and frolics

Four children might seem like a very small number to invite, but the frolics of the hour-long party were just enough for these over-excited under-fives to manage without the situation getting out of hand. The other parents, it being their own child’s first party experience, thankfully elected to stay for the hour.

The presents that they kindly brought my son were also wheelchair-friendly. I had envisaged the arrival of completely unsuitable presents for me to manage, for example tickets to theme parks at the other end of the country, a family jogging planner or contortionist board games. They actually turned out to be books, washable paint and a back pack. The other children in the toy store were not staring at my wheelchair as I had expected, but rather at the enormous, life size toy bear that led my son’s party. I was able to simply sit back and watch. By the end of the party the children were far too tired to want any lunch and they went home happy with a teddy bear that they had made. The toy store staff did all the clearing up.

Christmas holidays were a lot harder. I had not remembered that the weather would grow so cold, so dark and quite so quickly. More than that, my own personal assistant (PA) was on annual leave and the grandparents had gone away too. I hired a temporary replacement PA and although I liked her a lot, the children didn’t. My son took his frustrations out on me and then my daughter refused to go anywhere near her.

Out of reach

I could choose to do my Christmas shopping online but there was no pre-school to keep my son busy. My daughter, now not just walking but running, kept getting tangled up under the table or behind the sofa until I coaxed her out with packet after packet of raisins. Conversely, my temporary PA was busy hiding the children’s Christmas presents on top of the wardrobe or on the top shelf of the airing cupboard. This meant that they were safe but I could no longer reach them. These were the true highs and lows of Christmas.

At home we spent several days sorting out all the toys that we had amassed over the past four years. Many of these are designed for babies, so we could afford to clear them out. It kept the children occupied, busy doing all the sorting and re-discovering and it kept my personal assistant busy too, taking all the bags of toys down to my local charity shop.The town centre was bustling but my children and I had nowhere we could safely go. I have always wheeled around without my footplates for ease of access inside the house and out.

I use the power in my leg muscles to lift my feet clear of the carpet or pavement and prevent my feet from scraping on the ground. Working non-stop, however, to take care of two young children, I had neglected my daily exercises and both legs now lacked the strength needed to lift them clear of the ground. I had gone without footplates for so long that I found by December, to my surprise, that my feet would not sit on the plates when I tried them. With a limited festive period physiotherapy service, I managed to entertain my children out of the house only by going straight from my carpeted home, by taxi, to a lino tiled superstore. My children, my replacement PA and I took a taxi to the superstore day after day in the freezing cold. The superstore was packed with Christmas shoppers and my wheelchair ended up entangled in the store’s range of plastic Christmas trees more than once. Needless to say I got to know the staff working in the restaurant and toy aisle very well by the time it got to New Year.

There are only so many games you can play before children find less suitable things to do. The superstore did come in useful for the bountiful range of toys on offer. For example, I bought a doll’s pushchair, which was a perfect height for my daughter to push her favourite teddy in, but also the perfect height for me to bend and lift. My son also found a child’s colouring set that kept both the children busy indoors. My sofa and I were also pleased to find that the felt tips were washable after all!

Seasonal highlight

The highlight of our Christmas is always the service at the cathedral and despite the freezing temperatures we all attended the service wrapped up. Processing up the aisle with banners, the cathedral children melted everyone’s hearts.

By New Year we were all exhausted and the temperature outside was getting colder and colder. Regularly sprinkling my wheelchair ramp with salt kept the children, both able to run around, busy for hours. I have always found that simple activities are more appealing to my children than the most expensive of manufactured toys. On looking back, the highs and lows of Christmas were mostly good-natured and entertaining. I couldn’t wait for the spring to arrive but now I have changed my mind and I can’t wait for the snow.

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