I am forever hearing and reading that people say that having a disabled child in your house. While I do not doubt that for some or even many this is true at the moment they make that statement. Unfortunately I don't necessarily agree.
Of course there are times when my son Hayden brings laughter into our lives but sadly it has to be said that he and everything that comes with him, is quite some burden right now and for the rest of his life. I know that burden is a very strong word to use but to us living this life that is what it feels like. Hayden will for the rest of his life have to live with us. He will be reliant on us to keep him out of hospital and alive on a daily basis. His 6 hourly medication, constant need to be hydrated, eye drop 5 times a day and two hour breakfast routine, his constant behavioural issues (he is severely ADHD), the interrupted sleep I get and of course the many hospital appointments and hospital stays. Then keeping his medication supply in stock, filling in the constant paper work and ....well the list just keeps on.
Naturally we do this because we are Haydens parents and we love him. Then there are times that we think about what might have been and why us? But don't judge us for this. You should try leading a busy everyday style of life with two busy children. Then add a disabled child like Hayden who is like having a very needy whirlwind in your house every day and you might just have the smallest glympse of what it is like.
Within all of this I know the health system of New Zealand does a good job by Hayden. Sadly family, in my opinion, are the forgotten link in it all. I don't think any one health organisation has stopped to enquire how my family and I are, are we stressed, how we cope, how my other children are coping. No one sits there and really understands Hayden and consequently what that means to our lives. There is very little respite and certainly very little spontaneous activity in our lives. We can't just spend the day relaxing or sleep in. I could go on but I think you get the picture.