Wandering down a long, lonely road
Last Reviewed 21/12/2018
By SWAN UK member and blogger, Jo - justreuben2007.blogspot.com
Reuben is now 11 years old.
In that 11 years we have had test after test done and here we are 11 years on and we still have no answers.
Frustrating? Yes … very.
But the funny thing is, I can deal with the not knowing but the being completely left in limbo and having no one investigating this is the most difficult thing.
Imagine, a long, long, winding road and on that road there are no people, no cars, no houses … just nothing. Well, that’s where we are as a family. Walking down this road alone.
From birth, Reuben has been surrounded by so many doctors and this would increase weekly. The number of hospital letters coming through the door with either appointment dates and times, feedback from an appointment or another referral would be unbelievably high. My diary and family calendar was always bursting at the seams with various appointments for Reuben and our lives would be taken over by visiting hospitals and clinics. It got to the point that I thought I would never work due to the high amount of appointments that we would have to attend with Reuben. Mr H had to stop coming to some of the routine appointments as he just couldn’t keep having time off. He would just come to new appointments or to genetics appointments.
Along with the mass of appointments would come various tests. Reuben suddenly turned into a human pin cushion for all their blood tests he had to have. We got used to the long waiting times and always went prepared with snacks and toys (we even wised up and started to request the first appointment of the day or last as this would reduce the waiting time for Reuben. Who, by the way hates waiting and just can’t manage it very well).
As the time has gone on, the appointments have dwindled off and we have been discharged from the many doctors and clinics. The more routine appointments have now become six monthly or yearly.
In a way I can deal with the routine appointments being far apart but being discharged from all the other doctors is struggle as I feel like we have just been left. I understand that a doctor cannot keep Reuben on if there is nothing they can do for him or if it turns out that Reuben doesn’t have the condition they were seeing him. But, what next? Where do we go from here?
Other than Reuben’s routine clinics that he attends, we are under no doctor to investigate his condition. We are basically left to our own devices But., Reuben’s condition has not gone away, he still has whatever it is he has and we are just meant to deal with this.
I feel like we have fell through a gap in the NHS net, that no one cares anymore. They have done their initial tests, he has been put on databases, they have done what they want and are no longer interested.
But, where does that leave Reuben?
I know he is in a great school setting and getting the support and help he needs to be able to work towards living as independently as he can. But, what about the future? What if his condition gets worse, what does the future hold for Reuben in terms of his health? These are all the questions that are just hanging there in this massive abyss that we are living in.
I feel disappointed, both for us and for him. Disappointed that doctors have given up on him and the ‘needle in the hay stack’ that they wanted so badly to find will never be found. We will be forever filling out forms with ‘undiagnosed condition’ written in the box that asks for medical illnesses.
Mr H and I are nowhere near informed or qualified to start searching ourselves. We wouldn’t even know what doctor to go to if we wanted to pay privately. We just wouldn’t know where to start.
So I guess we will just carry on down the long winding road, alone and always wondering what is going on with our blonde haired boy.