Admin duties

Since we came home from NICU last January (2011), I have had to become quite a pro at form filling, admin & managing the diary. I’ve never worked as a Personal Assistant before, but certainly think along with my mummy and caring duties I’m proving to be one fine PA to the boy.

One of the forms people will always tell you is a demon to fill out is the paperwork for Disability Living Allowance. It’s not actually that bad and the amazing Cerebra have produced an absolutely fantastic guide to help. The guide takes you through each stage of applying for DLA, starting from whether you should apply at all, through the claim pack box-by-box, with lots of useful hints and tips on preparing for a medical visit, obtaining supporting evidence, keeping a DLA diary and much more.

You can request a printed copy of the DLA guide by calling 0800 328 1159 or emailing info@cerebra.org.uk or you can download and print it yourself.

Personally I would recommend that when you complete the DLA form for the first time you make a photocopy. I know doing so will be very time-consuming but when you come to renew, it will make your life much easier!

Do have a look at Cerebra’s website for other useful financial information.

Anyway, it’s renewal time for us so..

It's DLA time again

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Me, myself and I

My life pre-Sam seems such a long time ago.

I worked in the glamorous world of local government PR. I did think I was quite good at my job, although had missed out on promotion opportunities due to interview nerves and was always agonising over whether I really did have a career. Shouldn’t I have been further on, higher up the ladder with my experience? I did worry about it. I wanted a career. I wanted to be good at something and did worry that I was somehow just blagging my way through and didn’t particularly have any real talents.

Our plan for when the baby arrived was to go back to work either three or four days a week. But there was never any doubt, I would go back to work.

But then Samuel arrived and we very quickly realised that our world was turned upside down and I couldn’t go back to work. Samuel would have so many appointments to attend, would need to be continuously monitored closely and need special care and there was only one person that was going to do that. Me.

So I resigned from work. They were very good and allowed me not to return and didn’t ask me to pay back maternity pay.

I’ve been doing this job now for about 14 months. It is the hardest job I’ve ever done in my life. I’ve never felt so tired. But then I’ve never felt so alive. I’ve never had such a purpose before. And do you know, I think I’m bloody good at it. This is my talent. This is what I’m supposed to be doing not writing press releases about new swimming pools or town centre developments.

I still find it hard to get use to the fact that I’m not earning anymore. I receive Carers Allowance, Sam gets Disability Living Allowance (DLA) and we of course get Child Tax Credits and Child Benefits, but these don’t come anywhere near to what I was earning. But then I don’t really have a social life or a huge desire to go shopping now, so my outgoings have dropped considerably (which is lucky). I’m lucky that my husband works hard and is very generous – if I want something I know I can ask him for it, but it isn’t the same as earning my own money. I really want to buy an iPad which is probably a bit self-indulgent, but I also want to be able to use it to play with Sam and I’m determined not to ask my husband  for the money but to save up the money myself, but as I only personally earn Carers Allowance it may take me some time!

I can’t imagine working in an office now. Worrying about meeting press deadlines and the office politics. I do miss some of the banter and being able to write. I love writing. Which is probably why I do enjoy writing this blog. It brings together my two passions – writing and my boy.

I still get to do the things I enjoy, reading, eating chocolate, crafting and now I have twitter and blogging which keeps me busy. I do wonder sometimes if I’m the same person I was before I had Sam, before we joined this world of ours. I think I am. I’m still chatty. I still like the same things. But I do look at the world differently. Everything looks different now. The grass, the trees, the sun, the birds. Life. Nature can be cruel and I’ve seen it right before my eyes. But it has also produced the most beautiful, precious little life I’ve ever known. Everything seems to have a different meaning now.

I carry around with me enormous guilt. I know it isn’t my fault, but the fact that Sam has this condition because I carry a faulty gene, well I can’t put into words how that makes me feel. It is like someone or something is squeezing my heart whenever I think about it, whenever I see him having a seizure. But that is my burden that I have to live with.

I am different to the person I was before. But I hope I’m a better person. With more love and compassion than ever before and an eagerness to help people not feel so desperately alone in this world. This is the job I was meant to do. This is my calling. Samuel.