That’s not to say that the rest of the family don’t love Christmas any less. I’ve been wanting to start playing my Christmas music since the start of November, but have managed to resist the temptation until the 1st of December which this year falls on a Sunday which, traditionally for us anyway, we will go and get our tree. Cue lots of decorations being brought down from the loft and Tiddles sitting around in his giant Christmas stocking waiting for Christmas Eve to arrive…
These are strange days indeed. The thing about Tiddles is that you know exactly where you are with him because he is so unpredictable.
Take the other night for instance.
When he got back from his session at his group, he absolutely did not want anything to do with me, everything I said, he would say the opposite. He didn’t want a cuddle, didn’t want me near him and having not seen him all day, it was a difficult thing to accept that your son apparently hates the fact that you’re in his space, his town, his country, continent, or even in the universe at all with him. He avoided me as if his life depended on it.
When I got back from rehearsals however, it was a different story. I went upstairs to see him, and he was watching a film as usual.
“Ok?” I asked. Nodding of the head in reply. That’s as good as it gets sometimes, so I took that microsecond of contact and went downstairs. I’d taken a few steps when I heard Tiddles walking out of the bedroom. I stopped on the stairs and looked round as Tiddles popped his head around the corner looking, well, not quite AT me, but certainly around the space where I currently occupied.
“What do you want?”
“Ok, I’m going downstairs now.”
No reply. It wasn’t really a surprise that he didn’t reply, because I knew that he only would ever say something if a) prompted, b) he couldn’t make it clear with a pointed finger, or c) there was cake. There was none of the above and so I carried on downstairs and went to the kitchen.
A few seconds later, he appeared in the kitchen. He’d followed me obviously. I know special needs children have a particular talent unique to them, but teleportation is beyond even them, no matter how many episodes of ‘Star Trek’ they watch. So anyway, he came into the kitchen, took me by the arm and led me back to his bedroom, where he threw me, ‘Hong Kong Phooey’ style, onto his book and train covered bed and proceeded to pull the duvet over me, and then jumped on me.
Now this particular form of apparent torture was mine and Tiddles connection. Since he had been a very small boy he loved piling cushions on top of me and then leaping onto them/me. As he has gotten bigger, the leaps and jumps became more, how shall we say, dangerous. Many is the time when he has jumped two footed onto the base of my spine, with painful results. Once the previous sofa had been consigned to the great charity shop in the sky, however, the cushion jumping adventures had stopped. But this was one of the few times in recent years that he had done anything similar to those brief moments that we, meaning me, enjoyed despite the potential damage.
“I don’t want your love.”
try not to turn away,
A broken man almost died of a broken heart…
We love ‘Star Trek’ in this house. Never a day goes by without at least one episode being on the TV, which is quite apt as one of the catchphrases from the original series and films has been adapted and adopted as the unofficial motto of the Hannam’s.
‘The needs of the One outweigh the needs of the Many, or the Few.’
Which leads to some clarification concerning my previous blog about Tiddles and his new eating plan. When I said that he could no longer have potatoes, baked beans, brocolli or chips, what I should have said was that NONE of us can now have potatoes, baked beans, brocolli or chips. We’ve all had to give them up. How unfair would it be for us to be sitting there shovelling those foods in whilst Tiddles is left eating his sweet potato chips and peppers? So we’ve all stopped eating them. Boy, has that been tough…
It’s difficult to know whether I am feeling better for not eating so many carbohydrates or am I just too knackered to notice.
Meanwhile, Tiddles supplement intake has gone up to 16 capsules and 6 liquid in the morning, and 10 capsules and 3 liquid in the evening, along with a couple of others throughout the day, which may cause him to become hyperactive whilst he gets used to them. Early mornings possibly, late nights definitely.
Has there been any difference? To be honest, I cannot see much myself. However, the degrees of change could be so minute that I just can’t see them because I see him all the time. However, there are the odd moments like when he sits with me, as he did this afternoon with his arm around me. We sat for about 5 minutes not saying anything, and then he licked my face. I turned to look at him and he was looking at me with a little smile on his face. I smiled back and he seemed then to be looking a million miles into my eyes.
If there is a soul, then Tiddles knows where it is.
He seems to have a way of looking into you and it’s in those moments that our connections are made. I can see glimpses of his world and I can tether him, albeit briefly, to my world and attempt to drag Narnia closer to home and bridge that gap, that gulf that seems never to decrease, no matter how hard I pull. But we keep on going, because I want to be there if and when he does come over here and that will never change no matter how long it takes.
It’s hard to know if it will ever happen, but you just have to keep the faith and take any tiny improvement as a step forward and just hope that one day he will, maybe, call me Dad.
In the mean time, can somebody beam me to a chip shop?
I alluded to this in the last blog about the possible pain that Tiddles may be experiencing, so I thought I would explain what this is all about.
Regular readers of these blogs will remember the ‘hilarious’ recount of the collection of the stool samples we needed for the various tests that had been requested. This was acheived by placing a square cereal bowl down the toilet to catch the enormous log that Tiddles manages to produce everytime he goes. These, along with the urine collected and the blood samples taken, were duly sent away for testing and the results came back last week.
Well it appears that my seemingly happy Silverback is in more distress than we thought. High levels of Mercury and Arsenic have been found in his body and these have caused brain functions to become limited because they are blocking the neural pathways that can make a big difference to his life. Along with this, his liver is under enormous stress and his stomach wall has been damaged which means that he isn’t digesting his food properly, so whilst we thought he was quite a placid little boy, the poor little thing has been in pain, and probably more than we were aware of. This of course may explain why he suddenly lashes out at me unexpectedly. It would also explain why he can get very upset from time to time.
Can it be fixed? Apparently so, with the right supplements and funding for said supplements because of course, nothing is free.
This makes my relationship with Tiddles all the more important to me, because as I said before, if he is in pain at any time, and the only way to provide temporary relief for that pain is to smack me, then I am more than happy to take the hits. If it helps him, he can whack me as hard as he likes.
However, there is more that I can do to help him. Another downside of the tests was that it highlighted which foods he was ‘allergic’ to. These foods were the ones that had caused the damage to his stomach and had put his liver under so much stress. Sugar we knew about and had removed it from his diet a few months ago. This had been a little bit disturbing to him, because one of his favourite things – Tomato Ketchup – contains sugar. And all of the ones that didn’t contain sugar, had apple juice in them, which was another thing he wasn’t to have. So I concocted a tomato ketchup for him that contained dates as the sweetening agent. It was red, it was made of tomatoes, it was quite labour intensive for what we ended up with and it wasn’t Heinz. But he liked it, amazingly so that was one hurdle cleared.
Sadly though, the other things we since discovered that he couldn’t have were broccoli and potatoes and haricot beans. And what foods does Tiddles love more than most? Baked Beans, Chips, roast potatoes, and broccoli. Whilst we loved the fact he enjoyed a roast dinner and plenty of green veg, we were blissfully unaware that his ‘healthy eating’ of vegetables was actually doing him more harm than good. So in an effort to make this transition as easy as I could, the other night I made him ‘chips’ with Sweet Potatoes which are a root vegetable and not a Tuber, like the potato, which interestingly is a member of the Deadly Nightshade family. In effect the chips were roasted sweet potatoes. He ate some, but he certainly didn’t finish them. So it’s back to the kitchen to see if I can’t make them more inviting for him next time. I’ll keep experimenting until I can get them right for him. And the same goes for his baked beans. Im now trying to come up with a recipe for a baked bean substitute for him so that he doesn’t have to miss ANOTHER of his favourite things, but also will not cause his body any more stress and possible pain.
That’s not to say that he can never go back to them, but I ask you – just how much more does he have to put up with?
There are many more children who are worse off, of course. But he’s my little boy, my responsibility, and it’s me that should be taking this pain away from him. He should be enjoying his life, not having to take several different supplements to remove the Mercury and Arsenic from his body and not being able to eat his favourite foods. But such is his and my life together. It would be so easy for us to just let him carry on eating what he wanted, but because he is so important, we can’t.
So it falls to me to come up with these meals for him to take away that pain that he is enduring. Because that’s what dads do.
And in the meantime, I’m off to the gym to toughen up.
Because that’s what this dad does…
I wonder sometimes about how you must see me Tiddles?
Do you ever see me as more than just a man who cuddles you and talks to you a lot, or do you just see me as an annoyance?
Am I somebody that you like spending a small amount of time with, or am I somebody that you spend as little time with as possible?
And when you look at me, am I somebody that looks like a kind, loving person, or do I look like a monster to you?
The times that you travel across from Narnia and join me in my world – is it because you want to, or is it because you want something?
In the moments that you make fleetingly brief eye contact with me, do you know who I am, or do you even care who I am?
When you are in pain, am I somebody to hit to relieve it, or do you hit me because you want me to take it away? Or do you just hit me because you like it?
Do you feel that I am more to you than just a meal provider, or a bottom cleaner, a swimming coach, a buyer of trains?
In the end, it comes down to this my beautiful boy.
I am all of the above when it comes to you. I cuddle you because I love you unconditionally and I want you to love me equally so. I want you to call me dad just once, without being prompted. I want to be the one who can take your pain away, whatever it may be. Recent events have highlighted that you may be in more pain than you are letting on. If that is the case Tiddles, you strike away. If it helps, then you hit me as hard as you bloddy well like. I’ll bear it.
I want you to want to spend time with me because you want to, not because you have to. I want you to realise and recognise, to see in my face when I’m feeling down or low, or sad and know that it’s ok, because that’s what people do from time to time.
When we sit together, can you read my mind? Do you know how I feel about you and how my heart breaks a little everytime you reject me with a word, or when you hide your face or pull away from me? But then again, how can you? You’re a little boy who is trapped (maybe) in his own private world, and who’s to say that it’s NOT me that you are hiding from anyway? I can only hope that it’s not and that it would be me that you would want to have by your side, to have you hold my hand and to face this life.
I want to be a parent to you in more than just a name.
I want you to know that I am your dad, and that I will do whatever I can to help you to realise this. If that means I have to keep adjusting my course, then that’s what I’ll do. Where I wanted to go is not where i’m going to end up. One look at the map of my life showed me that a long time ago. But’s it ok, we can only move forward. But in moving forward we have to realise where we are going.
We will always be travelling along the same roads, you and I. We may not be travelling them together, and you will most certainly be taking more detours along the way, but you and I will get to whatever destination our intertwined lives have decided is our final stop together as the Silverback and the Protector, Tiddles and The Old Man…
Father and Son.