Oh My Lord! Up to now I never gave carers a second thought. Actually I didnt even know what a 'carer' was. Now I see a carer a mile away and I instinctively know their routine, I can see if they've had not much sleep, and I totally understand why they look bedraggled. Its an effort just to have a shower most days because your too busy cleaning your dependants. I used to be scared of even looking at them in the shops because I didnt know anything about illness or that sort of responsability. Now I have the upmost respect for these amazing people and the strength they show everyday, with complete understanding and empathy for their family members in need.
Its the hospital visits that are the hardest. Its ok if people treat you respectfully, but if one person who can save your kids life crosses a line...it can be painful. Ive just gone through this growing pain of being a carer, where I have to make a choice. Do I want to focus on getting my kids help or do I want to be offended and distracted. With the right focus I can keep it up, with the wrong one I can have sleepless nights dreading my next visit to a cold room where I am nearly completely misunderstood. So Ive chosen the right focus - ignore all those who get in my way! Accept they are there for the long hawl, but their personal opinions dont matter one iota. Now hospital isnt so dark after all. Today for example we had a CT scan and the ladies were so lovely, it was hugs all round when we left and one walked me to my car. That is the result of positive strong focus.
The Morquio syndrome had me doing all sorts of things since my last entry. We visited Professor Sillence, a specialist in a nearby state and recieved a lot of new information on their development. It was a shock at first to realise your kids wont be immune to the symptoms. I then quit my job to take care of them as we were told the situation was quite grave. The kids have benefited so much by having me here in the arvos and nighttime and we are very content. Charlie's behaviour is doing amazing in regards to confidence and completeing tasks. The twins are less sick with fevers and flu, with reduced biting incidences from Andrew and less hitting from Michael.
Since the trip to the eastern states Ive been getting ready for their first fusion on the cervical area of the spine. They will be putting a metal plate underneath the brain after removing a few bits of bone. They attach this to a bone graft from their leg (I think) and then they put 5 or so screws into the spine beneath. Then they are put into visor orthosis for 3 months or so, which is a plastic cast that goes around the forehead all the way to the stomach, with a little hole for their face. Ive chosen blue casts with cute designs so the colour of their blue eyes will be striking, to melt people hearts in case people are afraid of them (yep it could happen) and ive resown recycled clothes from the thrift store, so they wont have wear the hospital gowns while they are in the ward. Its amazing that noone at the ward tells you they wont fit into their usual clothes because the cast add an extra cm to their head, it the Morquio and MPS families that told me on facebook nearly 7 months ago. Without that knowledge I would have been in a panic with hardly any clothes for them to wear.
Yes thankyou MPS people of the world, you are by far the most angelic group of people with all the right information for me anytime I need it. Without you I dont know where Western Australia would be in understanding this disease. You all dont know how much you mean to me, I love you all!
