A year on…

I cannot believe it is a exactly a year to the day that I started my blog and opened up my heart and shared our journey with our amazing and beautiful Daughter Isabella. A year. 365 days. It seems almost ridiculous that so much time has passed us by so quickly, but what a year it has been.

I started the blog initially, as a way of expressing my thoughts and in some cases venting. In fact looking back my first few posts do seem quite negative! But writing them really was (and is) like therapy for me. Once I had cleared out the clutter of negative thoughts and experiences, I was able to share other happy experiences and talk about the importance of family and friends. That is not to say I haven’t written any negative posts since, and sadly I think there will always be the odd few more often than not, depending on particular situations that we find ourselves in.

Once I had written a couple of posts I was addicted, it felt so good, so therapeutic, sorting and arranging my thoughts. Sifting through the good experiences and the bad. To start with my love affair with my blog was constant and regular. My blog was my companion while my husband was away. It was also his companion, as he had time to read through my thoughts and digest the information in his own time, without me babbling or shouting ( I am loud on Skype) and him constantly asking me to repeat myself, due to the connection on Skype being so poor. When my husband finally came home after four months away, inevitably the love affair became less frequent, as I now had my ‘other’ companion.

Whilst pregnant with Isabella I had written a blog from Isabella’s perspective inside my tummy. The blog although on the internet was not particularly publicised and was only read and followed by my family and close friends. This blog however has been different and taken on a life of its own. To start with my only followers were again my family and close friends. Then my new-found fellow SWAN Mummies began to follow me and then through the power of Facebook and Twitter the numbers slowly grew. It is strange to think that people in different corners of the world are reading about our special little girl and our journey through the unknown.

I know some people may think it is strange that I have my life with my Daughter on the internet and had you asked me a few years ago about sharing my life on the internet I would have laughed at you and thought you were mad. For all its negatives and downsides, such as internet trolls and cyber bullying the internet has proved it can be positive and make an impact. Over the last year my blog (and others like it) has raised the awareness of SWAN and children with undiagnosed medical conditions. It has made strangers and people I know understand a bit more of what life is like with a child with disabilities. It has made people understand that things aren’t always what they seem. It has made people realise that how they act and behave in certain situations (intentional or not) can have a devastating impact on other people.

I am not saying my blog has reached the masses by any means, but it has reached a few people and made them understand a bit more and in turn tell other people. Through my blog I have also had people interested in raising money for SWAN and interested in the classes that Isabella goes to.

When I go to classes with Isabella, I always tell the class teacher to share my blog via e-mail so that people who feel uncomfortable in asking questions can understand more about Isabella and her difficulties. It also means that I am not bombarding strangers with a long, shortened version of Isabella’s journey. My blog acts as my voice.

In the last year Monkey’s journey through the jungle has been a long one. When I started the blog Isabella was undiagnosed and I had only just discovered SWAN. Now Isabella has her diagnosis of Polymicrogyria and quite frankly I couldn’t imagine my life without the support of SWAN and more recently my fellow Polymicrogyria (PMG) Parents.

We have also completed a sponsored swim in aid of SWAN and been interviewed twice on BBC local radio and appeared in the local newspaper.

We have been to hospital on several occasions for several appointments including;two eye tests, two EEGs, an MRI Scan and had bloods taken. As well as a check up with the Pediatrician, a genetics appointment and Neurologist appointments, including a referral to Great Ormond Street, where we were knocked for six with an unexpected diagnosis.

So a year on and my amazing Daughter has continued to inspire me with her strength, strong will and determination. She has dealt with all that has been thrown at her. She isn’t walking yet, but she is now weight-bearing, which a year ago was something she wasn’t able to do. Isabella is the reason for my blog and the reason I stand up, fight and speak up for her. She is my world. My amazing little girl, my special little ‘Monkey.’ xx

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2 thoughts on “A year on…

  1. “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.”

    Mary Anne Radmacher

    Love and miss you both loads xxxx

  2. Thanks again for sharing another great blog! Never stop writting them,though at occasions they make me cry but most of all make me very proud of you and Isabella! Sending you big hugs and kisses from Bahrain xxxxxx Mum/Nuna

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