Tubes and things

I was sat at the table last night with DH, talking about Michael and his lung issues, the times we've spent in hospital and all the things that have happened over the last 6 years. How sick our son has been during that time, and the upheaval that has gone along with it.

We are so looking forward to the day when all this ends, when there is no more sickness, and the oxygen concentrator is returned. We were saying last night how we don't ever want to go back to the days that have gone before.

But it started me thinking, about how things have been, and the things we've not been able to do. Simple things that lots of families take for granted, such as being able to celebrate Christmas altogether as a family, or even being able to plan things for Christmas, like going to relatives, and winter birthdays, we have missed many of the things that families are supposed to be able to do together.

There are certain places that we know it is just impossible to take Michael too, such as museums, and aquariums. I tried, and it wasn't pretty!! Michael loved the aquarium, but he scared the fish silly! And yes we got told off, and told to control him, and stop him from banging on the fish tanks. So he ended up strapped in a pushchair, which then left him fighting and screaming round the aquarium.

Holidays abroad are just a complete no.....the thoughts of spending x number of hours on a plane with Michael, scares me silly. I don't think it would just be him that needed sedating!! It's not just that, but the extra cost of taking Michael, in insurance, and needing 02 etc puts holidays abroad way out of our budget.

We have however discovered that we can do theme parks, because Michael is registered disabled we can get passes to save us having to queue! But we learnt that lesson the hard way, after spending 5 hours wandering around because the queues were just too big for Michael, so we got more done after 5pm when everyone else went home.

On the way out the park we discovered a scheme for disabled persons, which most theme parks have, and would have saved us a lot of tears and a lot of trauma.............but left me with guilt.

Michael's disabilities are hidden disabilities, there is no obvious sign of a disability, so getting to the front of the queue means walking past all these people who have been waiting patiently for their turn, so do we go to the front or do we wait our turn with a flailing, screaming, wailing child??