Join Team Sam!

I’ve been so grateful of all the support I’ve received since joining twitter and starting this blog. It might sound cheesy but I really feel that we are all part of Team Sam.
If you’d like to be an official proud member of Team Sam, all you have to do is grab the badge below and put it on your blog. In return we’ll send you a big Samuel virtual cuddle.
Tricky Customer
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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.

I get by with a little help from my (cyber) friends

I’ve been quite surprised by how helpful and supportive I’ve found twitter and reading other people’s blogs. We’ve been plodding along in our little bubble just the three of us, only occassionally letting people in. We do have very supportive and kind friends and family, but we are so aware that they don’t really get it, as much as they really do try, they really don’t get what it is like to be in our world.

But I don’t think badly of them. Before I had Samuel I had no experience of this special world, or indeed if I had been a mother to what the world calls a ‘normal’ child then I wouldn’t truly understand what people in our shoes are going through, what they are experiencing, I mean how can you?

But I have made friends who are in our world. They really do understand what it is like in our funny little world and our thoughts and fears.

I probably shouldn’t single people out, but I really want you to know about them and to read their blogs and to find out about their story.

The first is the family of Liam the Lion. A couragous boy who has proven to be a brave little soldier in his three years. I can’t remember how I came across his dad’s blog Pressure Support, but I am so glad I did. Liam’s parents have really inspired me, have shown me that the world is still bright, the sun still shines and there is so much to enjoy regardless of what my boy can do. Regardless of his condition. I read Liam’s dad’s blog posts and I can feel so much love, so much love and pride for his boy. Liam’s dad also writes beautifully. Liam also wears really cool t-shirts.

My other new friend is H’s mum Little Mama said. She is me. She is still finding her way, trying to figure out what on earth this funny world is about. She worries about the same things as me. She’s suddenly found herself doing this job she never expected to be doing. But boy, she’s superb. What she does for both her boys, all her love, all the bloody hard work she puts in, I so admire her.

I hope that I can help people through twitter and through this blog to realise that actually our funny little world is much bigger than many people realise. And there is no reason to ever feel alone.

Happy New Year

Samuel’s first Christmas at home was really lovely. To be able to wake up on Christmas morning and see him there snoozing in his cot was just fantastic.

Christmas 2010 was spent huddled next to his cot in Neonatal watching the nurses doing things for him, but this Christmas he was all ours.

We don’t know what 2012 will bring, but I pray with everything in my heart that Sam will have a comfortable and healthy year full of love and cuddles. And importantly next year I will be here again posting photos of his second Christmas snuggled up at home.

I hope 2012 will be a happy and healthy year for you all, especially my good friends on twitter who are amazing characters. Don’t worry about the small things this year, don’t let petty things get in the way of appreciating the important stuff.

Enjoy all the cuddles you have with your little people.

Happy New Year my friends, have a good one. x