Another blog that Kim wrote for her team at work, again proving that all life experiences are just as valid at work as at home.
The biggest challenge I face each day is finding the energy to keep all the plates spinning. Having a severely ill child is relentless. Aside from the life threatening daily seizures and caring for a three year old with a development age of 6 months who can’t walk, talk or eat, and who’s play and interests never change, we must contend with hospital appointments, house adaptations, fighting the NHS so that we can give him real food down his gastrostomy rather synthetic formula and working with social services and health authorities to secure the help and care that Toby needs. On top of this, both my husband and I work, which is generally not the case when people have a disabled child.
Toby’s illness does not have a cure, and he is not responding to any of the drugs that are available. So we have no hope to cling on to as we battle through this.
Recently we were asked by our Professor at Great Ormond Street if we would like Toby to go on a new drug trial of Fenfluramine. This drug was a dieting pill in the eighties and was withdrawn due to it causing cardiovascular failure, so the trial is not without its risks, however with no other options available to us we agreed. Each time Toby tries a new drug or dietary treatment, we try hard to not to get our hopes up, but it’s impossible not to, and you dare to think how life could be if his body and brain was not constantly battered by seizures. Imagine if you were working on your laptop and it kept crashing and rebooting every few minutes, how long would it take before you stopped trying? A two minute seizure is likened to running a marathon. Could you do that several times a day? That’s what’s it’s like to have a brain that is constantly in seizure.
We spent the day in GOSH where Toby was put through dozens of tests and just assumed he’d get on the trial. Sadly a week later, the Professor called to say he had been rejected from the trial due to a leak in his heart and issues with his liver. We were heartbroken. Our little ray of hope was extinguished.
As most people will know, I’m a glass half full kind of girl, so not having hope is really difficult and I strive to find the positive in all situations. The best I could come up with was not having to spend a day in GOSH every two weeks for next six months.
What I have learnt from these setbacks is that it’s vital to move on quickly. We do not have the luxury of excess energy to dwell on the past. It’s important for us to learn from each situation and understand what we can do differently in the future. This approach has helped me to build true resiliency that can then support me in all aspects of my life, be it relationships, work or health. The hope I hang on to now is that I can continue to quickly get back up, dust myself off and face the next challenge with a smile on my face.