Since I started writing the Disability Diaries, I have had an influx of friends apologising to me. Why? They do not feel that they have involved themselves enough when it comes to J1 and how we cope with his disabilities. I could be coy and say 'Thanks for admitting this', but that would be unfair.
I have shut a lot of people out since I had J1. Not shut them out as in cut them off, we have remained friends and meet occasionally, but I didn't invite them into my 'new way of life' because I wanted to be selfish. I wanted a few people who I could, for a couple of hours a year, go back to my old life with.
However, as I have got older, settled and had more children and most importantly learnt to fully accept the blow that J1 received to his life, I no longer crave that need to hold on to 'old life'.
Of course, I don't want to lose those friends and they too have obviously grown 'older and wiser' and now want to know more about the 'real' life we lead. I give them the normal information, about J1's difficult birth which resulted in the Brain Damage and the subsequent condition of Cerebral Palsy. They know he needs a wheelchair and that my house is full of equipment. But I have been thinking more and more, for the benefit of all my friends, or those not familiar with anyone with a disability about what I would really like them to understand and what the best thing they can do it.
I have concluded that the greatest thing they can do is try to fully appreciate where J1 is coming from, to have empathy for his situation. But how do they gain that? How can they understand why, although J1 is 8, he can cry very easily and over the smallest things? Why he sometimes gets very crabby at us when we dress or undress him? Why small children running around petrifies him.
J1 can not walk. J1 can not crawl. J1 can not roll. J1 can not sit. J1 can not turn. Unless you live or care for a child that can not do these things, I believe, it is impossible for someone to ever fully grasp the multitude of complications and effects that this has for that child.
For example; J1 can not roll. This means he can not change his position so at night he must rely on someone else to reposition him, comfortably multiple times through the night. Now, imagine how many times you toss and turn until you are comfortable enough to go to sleep or get back off to sleep and how frustrated you become if you can't.
J1 can not change his position independently. If J1 ever gets a bout of reflux, which he is prone to, and we were not there to hear and move him off of his back, he would choke. Now imagine how you writhe around if you have tummy ache.
J1 can not crawl or move around. If J1 has a toy and it falls just out of his reach, he can not move to fetch it back, he just has to lay and look at it until someone returns it to him. Now, imagine how frustrated that would make you.
J1 has no torso control. In short his brain does not send messages to his core (chest, tummy, pelvis) to say sit. So he is, in effect, a floppy rag doll. He can not dress or undress himself, we have to move him in and out of all his clothes. Imagine how you feel if someone just helps you on with a coat - you generally take the help, them promptly move away and make it more comfortable. How would you feel being pulled around to be dressed and then not being able to adjust anything?
J1 can not walk. He is wheelchair or equipment bound all the time. Therefore he can not move himself out of danger or away from something he doesn't like, thus he is extremely sensitive to situations where children are running around him or being unpredictable. Imagine yourself strapped into a chair, unable to move - would you be cool, calm and collected if an frantic activity was going on around you?
To try and empathise or understand someone with a disability, just try to put yourself in their position, believe me, you don't think about it very long before you think 'I don't want to think about this anymore.' because the scale you need to comprehend, and the challenges you would face are too huge to try and take in. And you immediately feel FRUSTRATED, but you can stop thinking about it, and continue as normal.
But for that child or person that is their life. J1 has never known anything different and his acceptance and patience he displays never fails to make me stand in awe of him. But he does have bad days and moments, especially as he is getting older, and I please say to anyone that witnesses those; just put yourself in his shoes. And for anyone that really wants to be part of, and understand 'our life' - just put yourself in his shoes.