A week ago I got a phone call from a nurse who used to work on the kids ward at the hospital. She no longer works there, but works at the Launceston Clinical School. It is a part of the University of Tasmania's School of Medicine program, and runs from the hospital.
She rang to ask me if I was interested in taking part in their 'Patient Partner Program' (P3) with Noah, where we would come along for a few hours one morning and talk to year 4 and year 5 med students. She said that this week they were focusing on 'disability' and that there would be three other people who have disabilities who would participate, with Noah being the only child. She also said it would involve talking to two groups of a maximum of four med students for 50 minutes.
I thought it would be a great opportunity as a lot of med students don't have a lot of experience in dealing with kids like Noah, and whatever I can do to help educate anyone about disabilities or hydranencephaly is an opportunity not to be missed.
I organised with Alison for Kobe to spend the morning with her, and it was a HUGE mistake to tell him a week before it happened as he was SO excited to go to 'Asn's house'. Every morning he would wake up and the first thing he would say is 'me going to Asn's house today!!'. Then we would remind him it was on Wednesday and he would cry and cry saying 'no today!'.
He was hanging out for it all week and was so excited yesterday as we were driving to meet her at the hospital. He yelled and pointed 'I can see Asn's house!!!' (even though it is nowhere near the hospital!). Alison picked him up and he had a fantastic morning with her. When Noah and I met them after lunch he was so excited to tell me all the things he had done - first of all knitting with Eleanor (Alison's Mum). Supposedly he was interested in it and Eleanor told him she would teach him how to knit when he was a 'big boy' to which he said 'I AM a big boy!', so knitting time it was! :)
It was nice to be able to have such a long time to talk about things with them and you could tell they were all very interested. The doctor would often stop me talking to ask the students a question, and it took all that I had to not put my hand up and say 'ah, ah!!' like a little kid at school who knew the answers as it was all stuff that I know so much about after dealing with it for the past ten years.
The thing that I was surprised about was that the doctor was actually really interested in teaching them about how having a disability affects the family, and about attitudes in society, rather than just focusing on the medical side. I was really pleased that they looked further than just dealing with treatments, prognosis, and medications etc but instead wanted to know how caring for Noah affected me, and how our family had coped with hearing the news etc.
After the first group the GP that was supervising the first group I spoke to,
came and found me and put his arms on my shoulders and kept saying how
much he appreciated me coming in, and how much he loved what I had to
say, which was nice to hear. We had a break in between groups and got to spend time with the other three participants who also had disabilities. There was a 40 year old man with Downs Syndrome who was there with his Dad, another guy who seemed to have some kind of brain injury and another man who was a paraplegic after being in a motorbike accident 38 years ago.
The man with Downs Syndrome was awesome and was telling me lots of stories about being bullied and how he had dealt with that. He told me that often kids would go up to him and go 'hiiiii - I'm spastic!' and back to them he would just say 'Hi Spastic! How are you!?'. It made me laugh and I told him it was great that he could turn it around, but it also made me sad to think about how hard it must've been growing up as he was bullied because of his disability. It reminded me of how a lot of people use the word 'retarded' in such a negative way when putting something or someone else down, and how hurt this man must've been throughout his life.
The man who was a paraplegic was amazing and told me all the things he continues to do despite being disabled. He is married, has children, travels, mows the lawn (on his ride on mower) and just gets on with life as much as he can. He told us a hilarious story about how he was mowing the lawns and a nurse pulled up to give him an injection and said 'I'm here to give a patient an injection - they are a paraplegic' and he was like 'yep - that's me - I'll just get into my chair' and got himself off the ride on and into his wheelchair, while the nurses eyes just about popped out of her head as she was imagining a patient who was totally different. It was so nice to hear that he has such a great attitude about life. He told me he looks at Noah and it reminds him that there are a lot of people out there who have it harder than him.
The second group of students I talked to was run a lot differently. They wanted me to start by just telling them Noah's story and then they jumped in asking me questions as they came up. The supervising doctor was one we had dealt with on the kids ward before and was lovely. They asked a lot about how we cope, asked me what I do for myself to take time out, about support we have from family and friends, how we cope financially, especially when there is no support from the government, whether I can do any paid work, how our other boys cope and how they deal with Noah, and how we find the different places that we deal with such as St Giles, the hospital and school, and about access in the community (or lack of it which is often the case).
They seemed quite concerned about me and kept asking if I ever get to do anything for myself and if Aaron and I get to spend time alone together. I told them how hard the first 4 years or so was as Noah was home full time and I didn't get a break then, but how I joined a gym once he started school and how that was now my outlet.
I also told them how our faith helps us cope with things better too, and how the main thing is to not look too far into the future, but take one day at a time and just try to see the good side of things, even if there are a lot of negatives. I said that sometimes you can just think about how crappy life is, or how tired you are when Noah is having a bad night, but then you think about how lucky you are that he is still alive and with us and that puts things back into perspective again. It was really nice to know that they were so interested in emotional and social side of things, rather than just the medical.
They also discussed things like how the diagnosis and prognosis was shared with us, and if it was done well or if it could be done differently. Noah was awake for the first session and had three seizures while we were there, which was 'good' for them to see as that was normal for him, but slept the entire second session.