Three years, two months, two days. 1 surgery, 9 blood tests, 2 MRI scans, 4 ultrasounds, 2 x-rays, 1 barium swallow, umpteen pee and poop samples. 11 consultants, 3 geneticists, 4 dieticians, a swathe of nurses, more therapists than you can shake a sensory stick at and the underlying result is: normal.
Every current medical poke and prod has diagnosed that my boy is ‘normal’. That’s the wording used on test results. But every doctor’s glance, the eyes of every health professional to visit my home, the longer than comfortable lingering looks of unknown people on the street all scream otherwise.
It took time for my guts to acknowledge the scream, fight the scream, find a way to tackle and grapple with the scream and finally stop screaming. No, that’s not true, it hasn’t stopped, some days it’s a squeak; others that scream pierces.
Josh doesn’t eat, talk or walk and has no underlying diagnosis. He is one of 6000 children born in the same position in the UK each year. We’re participating in the 100,000 genome project where every individual gene from Josh, myself and his Dad is being analysed to identify any variants or mutations. The stuff of science fiction is now my norm. While I occasionally ponder our genetic clones being harvested in a parallel dystopian land (they have assured me this won’t happen!) I want answers. I want any information that can in any way help me understand, treat, or plan for the future of my child. This is the daily limbo for parents of children with undiagnosed conditions.
Life was pretty dark. A bad day would begin on less than an hour’s sleep, Josh would wake screaming and vomiting 20 or more times a night. Morning meant starting medication and keeping to a schedule of tube feeding and sleeping (upright and on my chest) that would minimise vomit in any way possible. Everything revolved around vomit. And appointments, so many appointments. He was rarely happy, he screamed and moaned and was unable to engage in eye contact to express basic emotion. But his discomfort and distress were plain to hear.
Somehow, the cheeky, lively, scamp of a boy I glimpsed from time to time came to the fore. Josh loves people, music, hugs, shuffling here, there and anywhere he can find his ipad. He is a daredevil on his trike, always game for a bout of cushion throwing and a total water baby. His smile knocks me sideways and his laugh is utterly infectious. He is a typical toddler.
I say somehow he came to the fore, but there are key reasons Josh has been able to thrive. We have received immeasurable support from family, friends and professionals. My parents are, unquestionably, heroes. Can’t dwell too much on all they do as I will weep. It’s more than you can imagine. Friends have given me the most precious thing they could – time (and their non-judgemental ears). I have met some incredible medical and health professionals and have a very personal insight into the fact that our NHS is phenomenal – save it.
My relationship didn’t survive the last three years and I find myself a single parent on universal credit. Navigating the ‘new and improved’ benefit system over the last 6 months has been an unbelievably complicated, frustrating and personality-stripping experience. To be saved for another blog I feel. But in short, it is a despicable way of blindsiding and confusing people already in difficult and vulnerable situations.
Thanks to my family support network I still work three days a week as an English teacher. I love my job. It’s no doubt easier to say that working three days rather than five… and I’m lucky enough to have fantastic friends and colleagues who share in the enjoyment of a good rant and can find the joke in light and dark times alike.
It’s Sunday night right now and I need to get this finished so I can attempt some sleep and be some use in front of a class tomorrow.. Getting to the main point…
This Friday 27th April is Undiagnosed Children’s Day; this year we are celebrating the fact that our children are superheroes. Josh stuns me every day with his unique powers. He has an ironclad resistance to solo sleeping, putting food in his mouth and is the ultimate master at vomit by stealth. However, these are entirely eclipsed by his unrivalled bouncebackability, tireless mastery of all that is ‘scamp’ and boundless capacity to love.
The superhero theme is the creation of the charity SWAN (Syndrome Without A Name). When I felt most isolated and confused I came across SWAN and it was through reading the words of mothers in similar situations to my own that I was motivated to begin this blog. Finding others sharing the same experiences is an immense comfort. Most importantly it makes my day-to-day life feel more typical. Other people have answers to my questions and just ‘get it.’ If you are able, it would be fantastic if you could donate to SWAN to help support families of Undiagnosed Children and help raise the profile of the charity. This is possible through the website here:
They’re also running an auction with some pretty impressive prizes to bid on. Auction ends Friday: http://ow.ly/esoU30jvGmT
Thank you for reading this far – impressive and very much appreciated! Liz and Josh x