After a couple of cancellations, due to sickness, we finally had a representative from East Anglian Children’s Hospice come round to the house to meet us and Freddie. It’s strange as I was totally prepared for the meeting, in that, I’d said to so many people we wanted to build a relationship with the hospice so that Freddie was comfortable there for when it was time for end of life care, but I still found myself at various points thinking during it thinking he’s not just a bit behind developmentally, he won’t catch up, this will be the last place he goes, this is likely to be where he dies. I almost shed a tear at several points, simply because it seems so strange to recount my pregnancy, Freddie’s birth, his first few months then him getting sick and talking about last summer… then looking at this bubbly (almost) 18 month old sitting in his highchair, eating his lunch laughing at every opportunity. Strange because, one day, it won’t be this easy or carefree, strange because one day he’ll be considered more of a priority for some of their services. The lady that came was lovely, really lovely. She talked about how it works and explained we do most of the talking at this stage and then she goes back to the hospice and presents our meet to the board and they decide which of their services they will offer us at this stage. James and I talked. I talked more than James, I always do. We talked about Freddie, us, our home, friends/support we have, our outlets, our jobs, how we cope, my routine with Freddie and what I find hard/easy, me giving up work… you name it, we probably discussed it. I found myself telling her I was lonely, I was surprised at myself for saying it but the words came out and she didn’t seem as at all surprised. I told her it’s hard when Freddie can’t do what other children can therefore you either don’t get invited places or you do and spend it having a completely different experience to everyone else, sometimes don’t even see them – which doesn’t benefit Freddie as he needs the social interaction. Rationally, I know it’s normal we will take a different path with Freddie, I understand it and I’m ok with it but I wanted to meet more people like us. She said that’s why she’s here and it’s something they can certainly help with. The services they offer are very broad from play days and special events to Mum/Dad’s nights so the parents have a night off and meet other Mum/Dad’s in similar situations, various therapies, counselling, respite care (which they call short breaks) to their volunteer team that can do things for you/help out. I explained a lot of my ‘time off’ was spent cleaning or tidying the house and she explained it might be possible for one of their volunteers to do a couple of hours cleaning a week to help out. At the time I thought that was amazing but since discussing with James we feel that there’s some people who have very sick children that are tube fed or just have more complicated needs than Freddie does at this time and it would be wrong to take up someone’s time when another family/parent might need it much more. We also discussed ‘short breaks’ with her and agreed that’s something we’d slowly like to work towards, she said if it was approved for Freddie then they would move at our pace. As well as the respite care we discussed going to their events to meet other people and play therapy. She spent a few hours with us and explained that Freddie’s case might not be heard for a couple of weeks as the next board meeting has a hefty schedule. I told her I don’t mind, there’s no rush on our part. I feel relieved everything is now in motion for the hospice. People frequently tell me that ‘sometimes Doctors are wrong’ or ‘they don’t know’ as well as ‘they might find a cure’ or ‘if they’ve said he might make his teens imagine the new medicines that will be available in that time’. I do appreciate people often don’t know what to say. I also appreciate Doctors sometimes get things wrong, however, Freddie’s diagnosis won’t change, he has a specific genetic mutation, his physical limitations due to that gene serial number are debatable but also irrelevant to me. He might live until 13, by which time they might have some more support drugs that could help prolong his life further, I’m totally open to that – although, not entirely convinced! Being realistic though, his disease is fragile. He needs to remain healthy and we do all we can to help that, he’s on vitamins, supplements, I make him natural health remedies, he has a lot of organic food plus loads of fruit and veg. As well as being immunised against everything we can and being careful if people are ill. Since I’ve been apart of a private group for parents of children with mitochondrial diseases I have been made aware of incredibly sad cases where children’s life expectancies are dramatically reduced because they’ve become sick and their body has a bit of a crisis, it sets them back and changes everything. This is why I try to remain sensible about our situation, it’s not that I’m pessimistic(I actually think I’m pretty positive) it’s just I don’t find all the previous mentioned comments reassuring. We enjoy every day with Master Cheese and we often talk about how lucky we are and how grateful we are. It’s horrible not knowing when/how because it makes life difficult to plan. We are going to Euro Disney this year for three nights over his birthday. I’ve taken out special travel insurance for Freddie and I can’t help but have it cross my mind sometimes what if he gets ill?! September is a long way away! There’s still so much I want to do with him and I worry that we’ll run out of time. We never got our summer holiday last year, I’d love to take him on a summer holiday in Europe. I think he’d love a swimming pool and beach, but I also want to take him to Lapland to meet Santa. I know he’s too young and wouldn’t understand (I’m not sure if he ever would) so now isn’t the right time but then I find myself thinking what if we never get to go. Anyway, I’m pretty sure this entire post is pure chaos. I would love to make more sense of it, proof read and edit it but I’m suppose to be cleaning the kitchen and running the vacuum round whilst James puts Freddie to bed.
