Rory and Alfie have always been close- they shared a womb after all. But beyond that, they have a bond that I adore.
When you have a child with complex medical needs, you quickly realise how hard it is for others to understand their needs and wants. They do not know the change in vocalisations or facial expression, or the cry that means frustration compared with the cry that means genuine upset and distress. They have to learn it which is not always easy.
Someone who hasn’t had to learn, who knows instinctively better than Zak or I is Rory.
He knows exactly what Alfie wants and needs. If Alfie cries, Rory will present him with the toy or item he wants (though occasionally he will have been the one to take it away), or he will go and lie next to him as he knows he wants comfort and to be close to someone.
Rory isn’t shy in telling others if they get it wrong either, if they give Alfie the wrong toy or book, or if they take away the food when Alfie is still hungry. Rory knows, without being taught, and is Alfie’s constant advocate, without being asked to, at the tender age of 3.
When meeting new people, Rory likes to introduce Alfie to them as ‘my twin Alfie’. He will often tell them that Alfie’s arms and legs do not work properly, that he needs extra help and cannot talk. But he also reassures others that this is okay, and ‘we just need to help him’. This is Rory’s way of ensuring everyone knows about Alfie so that Alfie is kept safe and well. It is something we have never taught him, yet he has started to do. The same way he knows Alfie needs medication and appointments with doctors to keep healthy, he knows Alfie needs a higher level of care and wants to help ensure Alfie gets it.
This is the opposite to what I feared would happen.
As Alfie got each new diagnosis, I thought they would never have that ‘twin bond’ where they intrinsically know what the other wants, that their differences would be too much as they would have so little in common. But in actual fact, Alfie’s disabilities have highlighted it more than I could have imagined.
It is true that they just know each other, they will often laugh together at nothing, they will comfort each other when one is sad, and they truly enjoy just being together.