We've all been a bit up and down during the last month. Most of the downs are caused by Stanley's disabillity, unsurprisingly.
We're still trying to come to terms with the fact that our son is disabled. Hopefully it will sink in one day, but at the moment I'm still jumping between feelings of denial and sadness. It's all really because we still simply do not have any idea of the long term prognosis. No professional can give us any inkling as to the end result. Obviously this is because they don't really know, plus they don't want to give us false hope or make the situation feel hopeless. But surely they must have some slight idea of where we might be heading. Through years of experience of similar children, there must be at least a range within they can expect him to be. Anyway, being stuck in limbo between the two extremes - ie thinking that either he might end up walking slightly wonkily, or he'll be bound to a wheelchair forever - is sometimes too much to bear.
This time last year, there were no obvious signs of anything wrong. A month later, there was a slight possibility that Stanley may have a very mild case of cerebral palsy. Two months after that, it was more definite, and had moved from mild to moderate. For the next six months, we were thinking it was the mild end of moderate (whatever the hell that means), and no-one gave us any reason to think otherwise. Come January at Brainwave, they told us it was more like the medium to severe end of moderate.
Despite that bombshell being really bad news, we felt so much better. Simply because someone gave us their honest opinion. I know that health professionals are not allowed to give us their own opinion, but it really is the most frustrating thing about it all. Just give us worst case scenario, please - that would be better than nothing. Tell us it's a severe case, then at least anything else will be a bonus.
Anyway, at least Stanley is oblivious to both his parents having their weekly breakdowns, and for most of the time, he's really happy. The rest of the time, he's uncomfortable, not happy and moving in all the wrong ways which we need to encourage him to stop doing. This makes it so much harder to look after him, and it just makes us sad that he can't do things that he should be doing.
So, there's a lot of therapy happening at the moment. Physiotherapy, occupational therapy, hydrotherapy, music therapy, speech and language therapy, hippotherapy. The latter - hippotherapy - is a relatively new thing we're trying out for Stanley, and it has nothing to do with a hippo. It's all about horses, in fact (from the Greek hippos, meaning horse). There's a theory that the therapeutic movements of a horse (or in Stanley's case, a mechanical version of one), can be used during physiotherapy to help strengthen his trunk - which is the part of his body which is most affected, and holds the key to doing stuff like sitting and walking. In other words, everything that you and I take for granted. I'd never realised just how much goes into walking - it's just something that you can do. But when you think about how a baby can go from doing not a lot, to properly walking on two feet in roughly a year, it's pretty amazing. The day that Stanley achieves that goal - assuming he will - will surely be the best day ever.
Other than the obvious physical ailments, Stanley is still winning over everyone he meets with his glorious smile and his cheekiness. He'll definitely have no problem charming his way into anything he needs in life.
Willow, meanwhile, is getting along just as she was. She's really clever, and is ridiculously determined. She's got such an amazing little personality, and makes Leela and I laugh so much every day. We can see already that she'll be helping her brother whenever he needs it. She'll take him his toys, his shoes, and stroke his head. It's so nice seeing them interact, play and laugh together.
When they're like that and we're all having fun, everything is perfect. It's just this stupid bastard niggling little bit of brain damage that is getting in the way of us having nothing to worry about and enjoying every moment as a family.
We're still trying to come to terms with the fact that our son is disabled. Hopefully it will sink in one day, but at the moment I'm still jumping between feelings of denial and sadness. It's all really because we still simply do not have any idea of the long term prognosis. No professional can give us any inkling as to the end result. Obviously this is because they don't really know, plus they don't want to give us false hope or make the situation feel hopeless. But surely they must have some slight idea of where we might be heading. Through years of experience of similar children, there must be at least a range within they can expect him to be. Anyway, being stuck in limbo between the two extremes - ie thinking that either he might end up walking slightly wonkily, or he'll be bound to a wheelchair forever - is sometimes too much to bear.
This time last year, there were no obvious signs of anything wrong. A month later, there was a slight possibility that Stanley may have a very mild case of cerebral palsy. Two months after that, it was more definite, and had moved from mild to moderate. For the next six months, we were thinking it was the mild end of moderate (whatever the hell that means), and no-one gave us any reason to think otherwise. Come January at Brainwave, they told us it was more like the medium to severe end of moderate.
Despite that bombshell being really bad news, we felt so much better. Simply because someone gave us their honest opinion. I know that health professionals are not allowed to give us their own opinion, but it really is the most frustrating thing about it all. Just give us worst case scenario, please - that would be better than nothing. Tell us it's a severe case, then at least anything else will be a bonus.
Anyway, at least Stanley is oblivious to both his parents having their weekly breakdowns, and for most of the time, he's really happy. The rest of the time, he's uncomfortable, not happy and moving in all the wrong ways which we need to encourage him to stop doing. This makes it so much harder to look after him, and it just makes us sad that he can't do things that he should be doing.
So, there's a lot of therapy happening at the moment. Physiotherapy, occupational therapy, hydrotherapy, music therapy, speech and language therapy, hippotherapy. The latter - hippotherapy - is a relatively new thing we're trying out for Stanley, and it has nothing to do with a hippo. It's all about horses, in fact (from the Greek hippos, meaning horse). There's a theory that the therapeutic movements of a horse (or in Stanley's case, a mechanical version of one), can be used during physiotherapy to help strengthen his trunk - which is the part of his body which is most affected, and holds the key to doing stuff like sitting and walking. In other words, everything that you and I take for granted. I'd never realised just how much goes into walking - it's just something that you can do. But when you think about how a baby can go from doing not a lot, to properly walking on two feet in roughly a year, it's pretty amazing. The day that Stanley achieves that goal - assuming he will - will surely be the best day ever.
Other than the obvious physical ailments, Stanley is still winning over everyone he meets with his glorious smile and his cheekiness. He'll definitely have no problem charming his way into anything he needs in life.
Willow, meanwhile, is getting along just as she was. She's really clever, and is ridiculously determined. She's got such an amazing little personality, and makes Leela and I laugh so much every day. We can see already that she'll be helping her brother whenever he needs it. She'll take him his toys, his shoes, and stroke his head. It's so nice seeing them interact, play and laugh together.
When they're like that and we're all having fun, everything is perfect. It's just this stupid bastard niggling little bit of brain damage that is getting in the way of us having nothing to worry about and enjoying every moment as a family.
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