It is that time of year again when the weather starts to improve and the hope that generally accompanies Spring returns. Unfortunately, this has become a very difficult time for us.
Jago’s accident is just as clear in our minds as it was two years ago. We have been through an extraordinary time and I still stop in my tracks and ask myself if it really happened? Through this time, we have endured as a family and have found the resolve to fight our way through this mess.
It has tested our strength to breaking point and found the limit of our resilience. A limit we never wanted to explore.
Although we have had to accept our ‘new’ Jago and our new life, it is still very tough and Jago still has many days of great discomfort – it is almost unbelievable that not only has his life been extremely compromised but he also has to suffer – this is a desperate situation for a parent to watch.
Our main focus over the past year has been to surround Jago with a safe and loving care team. It has been challenging but we are getting there.
One of the bigger hurdles has been managing the influx of people that you suddenly find in your life when you child is compromised – doctors, nurses, CCG’s, Social Services, the list goes on. Suddenly your child becomes public property and you have to share him with all of these strangers that of course are trying to help but in reality a lot of time and precious energy is wasted.
We are still battling with our local CCG who do not believe that Jago needs 24/7 care, this has really taken its toll on us, but of course we will never give up. We have had to open the door to our lives and be scrutinised in the most invasive way to try to win this battle and because of that experience, our hearts go out to every parent that has to endure this further insult.
We were told at the beginning, ‘those that shout the loudest get what they need’, and we have found this to be somewhat accurate. It is grossly unfair on those that cannot shout or find the strength to fight.
Through the development of Jago’s website we hope to be able to provide some support and advice for these parents. The website will act as a responsible, audited resource providing useful information to parents who, like us find themselves in a devastating, new world overnight.
This whole experience has been such a steep learning curve for us, having to adapt to this expensive new world, that it would be shameful not to share our knowledge with everyone else, even if it helps just one family.
The recurring theme with people that have experienced a tragedy such as ours, is the wish to make something good come out of. We are determined to do this, with just a little help from our extraordinary friends & family.
Lyn & Barney Worrall xx