Like many families of disabled children, we view approaching holidays with a sense of dread. That may sound dramatic, but it is the reality for families for whom school is not just about education, but is about essential respite.
The needs of my child are so great that she requires at least one to one care at all times, most of the time we cannot be more than a metre from her. Other times, when her seizures are very bad, we have to physically hold her on a harness as she walks around to prevent injury.
Being tethered to your child like this gives a whole new meaning to attachment parenting.
Christmas for us evokes all sorts of emotions, of course there is some excitement, but it comes with a sense of heavy apprehension. Will we get a seizure free day? Will we be in hospital? What would that mean for our other child? The weight of it is tiring.
Like birthdays, Christmas can also be tinged with sadness, it can be a reminder of the things our little girl cannot do or understand, for example Father Christmas, or the anticipation of presents.
It can be exhausting to try to come up with present ideas when her development is not linear, there are only so many sensory toys one house can accommodate...
It’s important for families like ours to know they are not alone and there are some brilliant groups on Facebook that connect families and provide a supportive space for discussion. The charity Contact runs one of these.
Over the years I have learnt to try to let go of expectation or pressure when it comes to big events.
It’s a bit of trite line, but it really is just one day. In my experience of being a parent carer there is much joy to be found all year round in the good times.
I find those good moments, hours, days are turbocharged with happiness, perhaps of an intensity that typical families may not get to experience.
So, while it will always be a special occasion, Christmas for us will never be laden with the expectation that it will be a highlight of the year, that’s just as likely to occur on another day, when my little girl says a new word or has a really happy day. It’s in these times that real joy and celebration lies for us.