Lonely battle

It feels weird starting this as I’m not actually sure if I will ever publish this post and if I do, how long it will stay ‘live’ for. When I started this blog I never wanted to complain, to moan or be negative. It was never going to be a fluffy blog, apart from lovely things like enjoying our gorgeous boy and Samuel cuddles, there isn’t much that’s fluffy in our world. But I didn’t want to ever moan.

But things are feeling quite shitty lately. We are on Plan B with the diet and we have no idea whether it will work and if we will ever go back to the wonderful seizure free times we had on the Ketogenic Diet. We are having quite a difficult time  at the moment with Samuel’s seizures and we are literally taking  it one day at a time. If I worried about tomorrow after just about getting through today, I wouldn’t sleep tonight. We are doing everything we can to avoid Samuel (and I) having to go back into hospital for another diet or drug review. Things are hard.

I do believe that since having Samuel I am a better person in many ways. I know I’m more compassionate than I ever was before and my eyes are wide open now to disabilities. I am not frightened or nervous when I meet a child with a disability, I see their little character and am not afraid to take their hand and chat to them. But also I must admit in many ways, I’ve become less tolerant of people. Since joining this new world I’ve realised how stupid and thoughtless people are and how the phrase ‘Oh, but they mean well’, really sticks in my throat.

Something I personally find difficult is how on our own I feel we are. Yes we have my beautiful friends, who are here for me to talk to, cuddle and moan to, the invaluable support from our Julia’s House family and of course my online family who regularly tweet me and ask me how things are.

But often I feel that we are doing this very much on our own. Some of our family seem to choose to stick their heads in the sand and apart from the odd ‘hugs to Sam’ text message, we don’t hear anything from them. So if things start to go pear-shaped we have to ring and tell them, like we are announcing something. If they were on the road with us then they would know already.

Some of our family do ring regularly and although I know they feel out of their depth, they really try to keep up and to understand what is going on. They might not say very much, lots of ‘Oh right’ but they listen. They want to know. They remember our conversation. And I really appreciate that, it helps me to feel that they are there with us.

But I struggle with the people who just cream off the good stuff. They just want to see and cuddle Samuel and maybe be told the bottom line, but not the details. They aren’t on the bumpy road with us at all. They may talk about him proudly and I know love him very much, but they have no idea whatsoever what it’s like to have a hellish evening with a boy who wont stop having seizures and an emergency medicine that feels like it might not actually work.

The thing is I know that if we rang them up and said can we have/borrow x they’d say ‘Yes of course’. If we wanted them to do something for us they’d do it. But we would have to ask. When you are in our situation sometimes you need people to offer. To say straight ‘Can we do x for you?’ To call up and for them to make the effort to be kept up-to-date on how Samuel is doing rather than the responsibility to be constantly on us to report back, that would mean alot.

I know what you are thinking. Tell them. Let them know you feel like this. But it’s hard to get people to listen when their heads are firmly wedged in that sand. And what then? They feel like they have to call us up regularly and force themselves to listen? No. They have to do it because they want to do it.

It really feels that it is just Chris, Samuel and I fighting this battle on our own. To make decisions when to sedate our own child. When we feel we have to take him into hospital. When at 7pm he is all over the place but an hour away from medicines and we have to decide which route to take – early medicines, emergency medicines or maybe his sleepy drug? When to sound the alarm bells that things are getting more serious and we might be heading for trouble. Who makes those decisions? Us, just us. It can be a lonely battle.