Sometimes you don’t value quite what you have in front of your eyes, life seems to get in the way and you begin to normalise all around you.
Some 16 months or so on from diagnosis I would say we have normalised a lot of the daily challenges we encounter at present and the adjustments we have made to life as parents of a child with a chromosome disorder (IDIC15 / dup15q).
We find living in our own little bubble, we have forgotten what was considered the “norm” with our daughters when they were toddlers. Those things we took for granted, the ever growing independence they began to show from the age of two, the freedom it afforded us to have the occasional night out, compared to our new normality of structure, routine and putting Matthew’s needs first.
An event this week and a conversation at our daughters school made us realise how me we had also normalised the contribution our girls make to caring for Matthew, especially our eldest, who at nine years old so often quietly takes control and assists us in so many ways without ever being asked to.
I would not say we take their contribution for granted in any way, as we appreciate how they help however small it is, though looking now I can see how often it can go unnoticed as we have normalised what they offer and how willingly they go about it.
Taking a step back reminded us that at times they do get frustrated, they are still children after all, and as much as we try to give them the freedom to be children, sometimes our new normality and life seems to get in the way.
Our eldest daughters frustrations this week helped to remind us of this, we were pointed in the direction of young carers trusts, something until today we knew nothing about. This intervention reminded us of the value that the girls provide to our family unit and dynamic, but most importantly the value they will gain from being allowed to be children first and foremost and a young carer second.
I have already written in the past about how much the girls will learn from Matthew, something I firmly believe they will, however unintentional, it will make them more tolerant, caring and all round more incredible as they grow up. However inevitable and unintentional this is, it cannot come at the expense of childhood, their childhood is so vital and one which in the past 18 months or so has been something of a rollercoaster of emotions which they have taken the front seat of.
They are truly special siblings to a truly special little brother, and a little lesson has taught me that they sometimes they need a break from our normality and the chance to experience a different one, and most importantly the chance to be kids and do what kids do and have fun.