CARING

National Carers Week has just finished so I apologise for the lateness of this entry but it has been a busy week.    Jess had appointments and also a photo and video shoot for the Sun Newspaper who were doing an article on her with regards to how she enjoys being in the water and learning swimming with Water Babies (her Mum is a Water Babies swimming teacher).  I have included a link to this article for those interested but do not know how long it will be available.

Sun article 

Quite a few blogs have been written already with regards to the caring role of parents with children who have different needs.  My case is slightly different as I am not Jess’s parent but her Grandmother (or Nanny as I prefer to be known) I am registered as her carer as I claim Carers Allowance as Emma works part time and I gave up my full time job to help out, but I am just one of the many ‘carers’ in the family.  Jessica’s Mum & Dad obviously have the main caring role and we are proud of them for the way they cope.  Then there are the other members of the family, these include Ben’s parents, my ex Husband and his partner, my Husband and Emma’s Sister and her Fiancé.  All of us take an active role in helping out not only with Jessica but also her non-SWAN sister who is five.   At Christmas & other special occasions we will all come together as a family, any differences are left behind.  Unusual in this day and age?  Well perhaps it is but I am always thankful that we are able to do this, life really is too short for recriminations and our children always come first.

I love helping to care for Jess and have absolutely no regrets about the decision I made.  Every week brings different challenges and new rewards.

We have been told lots of negative things about Jessica since her having an MRI scan which showed that her brain had not developed as it should have.  We have been told that she may make progress to start with but the gap is always widening as she gets older so she will not catch up, at some point she will just stop learning.  Hearing these things could have had such a negative impact, we may have thought why bother to try and teach her new things if she is going to stop at some point anyway.  Why is there so much negativity from these medical people?  I can understand they do not want to give false hope but then I believe that as long as there is hope there is always something to strive for.  To this end I have decided to keep a video diary of Jessica and the things that she does.  In the early days she would just be on her back staring at the ceiling, now she can crawl, stand whilst holding onto something and a host of other things.  It will be good to be able to look back and see how much she has achieved.

And to get back to the caring topic.  Obviously carers are not just looking after children.  There are many carers out there who look after the elderly and the sick.  In an ideal world we would all be carers, we would care for each other whether related or not, we are all family, we belong to the family of ‘man’.  A pipe dream perhaps, but caring in a broad sense of the word can sometimes just be as simple as something as a smile to make someone feel good and surely we can all manage that.

I have included a short clip of the video I took showing Jessica eating spaghetti for her lunch.  Feeding has always been a problem for her, she has never shown any interest even in taking milk when a baby, hence her being tube fed and now her gastrostomy.  Although she is still only having a small amount of solids at the moment I think you will agree that she is doing very well.  Perhaps in another few months time I can post a video of her eating by herself, we will certainly be aiming for that. 

In the meantime I will keep filming and sharing.   I hope that the video raises a smile and if it does pass it on – (the smile that is)  :-)