Wednesday, 11 April 2012

Disability Diaries (The Life of J1) : Trying to Live Life

After our diagnosis, life with 'Cerebral Palsy' began, but our 'Life with a Baby' didn't just stop.  In fact it was easy to pretend to those outside of our inner circle that our world hadn't changed.  I knew paperwork was plentiful, we were becoming familiar with alot of professionals who's titles ended in 'Ist' and play dates were fitted in around physiotherapy sessions, but although this condition had come into our lives, J1 was still only a one year old baby boy with the same everyday baby needs as any other.

I found myself in a strange state of limbo.  On the one hand I was trying my best to accept and understand J1's condition and come to the point where I could say 'My baby has Cerebral Palsy' to those that needed to know without collapsing in floods of tears (that took a few years just for the record, before then it would be hit and miss), and on the other I was trying to live life as regularly as possible so that we could enjoy J1 just being a baby boy, and not a baby boy with severe disabilities. 

As our diagnosis came at quite an early age for J1, for the most part while we were out and about no one would know anything was different for us.  He could go in a buggy (with some extra wadding down his sides) and a bit of adjusting every now and then, just fine.  When we went out to eat, rather than using a highchair, always so kindly offered, we would either hold him on our lap or feed him in his buggy and to be honest, I think people thought we were being over protective and no-one seemed to question that we were feeding him his bottle rather than him holding it himself, or solely feeding him rather than letting him try and do it himself.  I guess people thought that was our choice rather than our baby couldn't do it. 

The ignorance of strangers was bliss at that time, because if at any point the enormity of it all got to much, I could generally go out for a walk, or to the shops or for something to eat and for those short few hours, Cerebral Palsy didn't have to exist.  I was the same as all those other mums wandering around with their strollers, day bag filled with drinks, snacks, nappies and entertainment solutions.

This gave me a sort of 'grace' period I suppose.  I could deal with our diagnosis news at a slightly slower pace, and with those that were trying to understand it with me.  I knew I had to come to terms with the diagnosis, and I knew that I had to continue living life and not let it take over.  I had no idea how difficult those two things would be and how I shouldn't be afraid to accept help.  However, initially with my baby still a baby I tried to just get on, without letting it affect me at all.  I was a single mother who was working so an abundance of spare time wasn't something I particularly had.  

For those first few months I managed to close my eyes and continue on our hectic schedule whilst fooling everyone that I had just taken it in my stride.  However, babies grow and a shock like I had received doesn't just hit you and not leave an imprint.  This of course, all being on top of the fact, that I had been dealing with my baby arriving 8 weeks prematurely and spending a month in Special Care.  Stressful factors that also didn't get dealt with at the time.

In my haste to try and continue to live life and cope, I was ignoring the issue that I was not coping and my body was about to tell me to stop and deal with things.


  1. I have no experience of this at all but I can see how difficult day to day life must sometimes be for you. Reading your posts reminds me not to make judgements about other parents and what they are doing (and I'm usually pretty good at this now) but it's worth remembering. Clearly your children are the centre of your life and they are very lucky to have you as their mum. Best wishes. Polly x

    1. Thanks Polly. I love comments like these, they make me feel like I am achiving what I set out to do with The Disability Diaries; To raise awareness of day to day difficulties that people with no experience would have no idea occur, but to also show how wonderful life is aswell. I hope you continue to enjoy our journey.x


I would love for you to quack your thoughts along with me and will always try and quack right back.