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.

5 thoughts on “Me, myself and I

  1. I know exactly where you are coming from about work. I can’t imagine stressing about the little things now that seemed so important before,nor spending time teaching other people’s children when mine needs me so much. Being at home with H was the ONLY option. I know I have made the right decision. Carer’s allowance is a pretty poor wage in comparison though isn’t it? Like you, I miss using my brain and so blogging helps me with that too!

    And you are definitely making sure we don’t feel alone. I’d say you’re brilliant at this new job too.

  2. Where do I start. Never before have I felt such a strong desire to respond to something. I am not on Facebook or twitter and only generally use my iPad to check my mail and order online! Today I was searching for a new gastrostomy rucksack for my daughter. She is nearly two and has a very rare condition affecting her brain. I then stumbled across this website and have literrally had to wipe my tears away at the relief it has given me reading your blog. I have never before read something so refreshingly true to home. I would have written it word to word if i were more articulate!

    My daughter was diagnosed at 7months old with her condition. As said she is nearly two and just like you mine and my husbands worlds are now unrecognisable and yes full of many more sad things but also such amazing things and I too feel a better person for being in this ‘new world’ as we call it. Yes of course if I had the power to enable my daughter to not have had this genetic condition I would take it, but it’s just like you said, where here, let’s face it do everything in our power to except it and enjoy our daughter for who she is; AMAZING, like Sam by the sounds of things.

    Your FAQ had me laughing and crying at the same time……… was so refreshing to hear as all of it I’ve heard since her diagnosis. The one that’s really getting me at the moment is asking about whether I would have another child; how on earth are you meant to respond to such a complex and emotional subject whilst passing in the street? All very bizarre! But I have to say I genuinely find people to be warm and lovely and whilst I used to believe they may be looking on with pitty in their hearts we don’t actually know what their thinking; it could be that they have a child or a niece/nephew who looks similar to ours (I just can’t help look when I see a special buggy as it gives me strength seeing other parents like me), I think oh wow, my daughter could have a chair like that one day, or oh I recognise that feeding pump. Basically we can’t assume we know why people look. It was my sister who said this to me one day and it has made me feel so much calmer when out and about. And most of all if I see a parent or a disabled person now it’s not pitty I feel but true and genuine respect “how cool and capable are they, I hope I look like that”. And if that’s not what theyre thinking, then hey ho, they may be in this ‘new’ world at some point too one day so leave them in their blissfull ignorance, after all that was us (well me anyway) and I would have never meant any harm. I think it’s just tiring though when you a so busy and you have to answer sometimes idiotic comments, the “is there a cure” or “will she grow out of it” or “will she ever talk” are the more stressful ones. It’s like errrr……you really want me to casually answer that here & now??!!

    Anyway I have not found a gastrostomy bag but I have found your website which is wonderful as I’ll check it again for sure!. My daughter is being cared for through restbite support for a couple of hours at the moment, she’s being taken to the ducks, so I am meant to be sleeping but always find more interesting things to do… searching for gastrostomy bags!! We are off to Demellza House for a weekend of respite for the first time tomorrow. I am a bit nervous as don’t know what to expect but think its going to be just what we need, a nice break away not having to draw up meds or weigh milk recipes!

    True thanks again for taking the time to put together this site, you have certainly picked me up today and I know my husband will enjoy your FAQs when he gets home from work! All the very best to you and yours……… my first ever ‘post’ and I’m finding it difficult to stop!!!!!! 😉

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