Dearest little one, I have just finished making a phone call, something for your brother. I was chasing an appointment, some support for him - I forget which – one of dozens of phone calls I make every month. My mind is on him, as it often is. I emptied the bricks onto the floor for you before I began, to keep you occupied while I spoke. I am anxious and distracted.
You tug at my clothing and I look down to see you holding up four connected blocks. Red. Blue. Yellow. Green. I know they were not joined before. You have made them. You hold them up for me to inspect, face beaming.
In that split-second I am amazed. You have done something incredible. Then, I remember.
I remember that your brother still cannot push blocks together. I remember that you already run better, climb better, draw better pictures than him, though he is two years your senior. And I am suddenly overwhelmed with sadness. I catch myself, extinguish the frown that had begun to emerge, force a smile.
'Sweetheart! Did you make those blocks all by yourself? That's wonderful! Oh look what you have made! You are such a clever girl!'. You clap and dance, hopping from one leg to another, delighted by the praise. And I feel ashamed.
This is a feeling I have grown accustomed to – learned to manage, to hide. But Christmastime hits hard. We look to the future. Yours, and his.
We must leave the Christmas light show that made your brother scream. We cannot visit Santa. The music that did not follow in the expected order must be switched off. The nursery Christmas party that you would have relished must be neglected, because he may not cope. Our plans and effort and thoughts must go into making Christmas bearable for him. And what of making Christmas magical for you?
The bikes and puzzles on your Christmas list, the role-play and dress-up, they are reminder of what your brother cannot and will not do. The excitement of bustling places, of loved ones being close, late nights and sparking lights – they all may be cast aside at a moment's notice. The joy of watching your face light up on Christmas morning will be tempered by the fear that his may crumple in anguish.
My beautiful girl, I am so, so sorry that things must be this way. I know that it is not fair. I know that one day you will notice. I know that one day you may feel resentment. One day, you will know the bittersweet sensation of love and guilt, shame and joy, all mixed together.
But know this –
I love you – every inch of you. And you are always in my mind, always part of the equation. At Christmastime, in summertime, every time I make a call for your brother, every time our care of him affects you – you are there. For every time a shadow temporarily masks my joy, there is another when you bring light to the darkest corners of despair.
You are clever. You are kind. You are irrepressible. You make me laugh every day. You call the Christmas tree a 'wistwurst twee'. You sing songs and pretend to feed your stuffed toys and you say 'hello' and 'goodbye' and 'Love you too mummy'. You are a miracle.
And that's what Christmas is all about.
Danielle was selected as a BISS guest blogger after entering our October linky. For your chance to write for GoodtoKnow, check out our Because I Said So platform.