Moving On

This weekend, I finally took down the magnetic board that has been in the hall since I moved into this house 8 years ago. This board had pictures of Jack doing different things like eating, drinking, bathing, going out in the garden and I used to use them to help him make choices.  He used to be really good at it too.

Often he would get frustrated because if he wanted to go outside, he only had to walk through the kitchen to the back door and persistently turn the door handle to get my attention, so he didn't see how he had to bother with the cards.

this was the board

My mum and dad were babysitting one Sunday when Jack was about 5.  Jack had soiled his nappy so my dad took him through to the hall and gave him the choice of two cards, one being the card for nappy.  Jack was so not impressed and he kept looking at my dad as if to say "you know what I need!" but my dad kept persisting and asking him what it was he wanted.  Jack started getting a bit frustrated and started making angry noises much to my dad's amusement.  This stand-off went on for about 10 minutes until finally Jack lost his temper, grabbed the card and kicked my dad.  My poor dad was torn between nursing his leg and being chuffed that Jack had picked the right card!

Jack pushing his own wheelchair

Jack used to eat and drink all day so I was constantly forcing him to choose.  He thought that taking his cup and shaking it in front of my face was a good enough indication that he wanted a drink and didn't understand why I didn't agree with his way of thinking.  He ate anything you would put in front of him. He just loved his food.  He particularly loved Doritos.

His epilepsy safety hat and look no hands!

One lunchtime, I served up a salad for both kids, one of Jack's favourites and I put a couple of Doritos on Holly's plate and Hula Hoops on Jack's.  I sat them both at the table and for the first few minutes, all was well. Then I noticed that Jack wasn't eating and was looking at his plate, then Holly's and back at his plate again. Then he started to really cry and I was like wtf????  He was inconsolable and got real stroppy so I put him out into the hall to cool off and he stamped his feet and threw himself on the ground!

I looked at Holly's plate and then Jack's and within seconds I realised that he was stropping cos she had Doritos and he didn't!  So I took away the Hula Hoops and replaced them with Doritos, sat him back at the table and all was quiet as he ate his crisps through his sobs!!  Very funny.

thinking about getting up to mischief

Jack loved to be outside.  The best thing about my garden is that it is totally enclosed so I could leave him there for a few minutes while I got him a drink or made a cup of tea.  He had a climbing frame which he loved and I taught him how to go up and down the chute safely, climb the rope ladder and how to get down from the other side which had no steps, He was so clever.  He used to put his foot out as if he was just going to step off into fresh air but he was just testing to see if there was anything to step on and when he realised there wasn't he would sit down and then just slide off.  He gave the physiotherapist a heart attack the first time she saw him do this but she couldn't get over just how much I had been able to teach him and just how much he could learn.

about to climb onto the sofa

He was like Houdini, you just couldn't keep him in.  If a door was left open, he would be out that door so quick but as he had no sense of danger it was very dangerous as he could easily get run over.  My friend Suzi, came to visit us the year we moved into the house with her new baby Joseph.  I was in the shower when they arrived so Holly let them in. Unfortunately she didn't lock the door after her and when I came down the stairs, the door was wide open and I felt my heart sink to my feet.  I quickly asked Holly where Jack was and she said she didn't know so I had to run out in the street looking for him and there he was running up and down the middle of the road!!!  I got such a fright I can tell you and he was blissfully unaware and wondering what the fuss is all about.

that dog is talking!

He loved cuddles even then and he was often sitting on my knee with his hand down my top! Oh did I tell you that he was a bit of a boobs man?  It was quite embarrassing at times cos often he didn't just stick his hand down there, he would pull my top down too!  He was turning his mum into a flasher!

I miss that child so much but his spirit is still here.  I can tell when he looks at me that he is still the child he was but that his body is broken and he can't make it do the things he once could.  His smile lights up my day, his hugs are the most precious I've ever experienced and his rare laughter is music to my ears.  I console myself that at least he had that time where he was able to do these things and that I was never afraid to allow him to reach for the stars even though while doing so he could seriously hurt himself.

So I don't feel sad about taking down this board because I have already grieved the loss of those skills.  Instead I am constantly trying to find other ways to communicate with my gorgeous boy but mostly I just enjoy my precious hugs and the cheeky moments when he feels up my bum in the morning, while I am getting him dressed!

He's obviously a bum man too :)