Martin House has become our safe haven. This time we visited was for respite and a review of his medication and his various’ paperwork’ so not really too taxing , however each time we make a visit planned or otherwise we question what we are doing there and how did we end up in this situation.
The reality is none of us have the answer. Instead we are thrust into the unknown where nothing was expected, planned or wanted but here we are: spending our time searching for that allusive crystal ball.
On each visit we meet different families, all with their unique story. Many have children who are much younger than Arjun, or have had numerous emergency visits then there are others for whom it is their first time or, like us schedule visiting for respite when there is no emergency just for a break (this time).
This time I particularly felt like a fraud. There were children there who had more visible challenges; breathing machines, suction tubes, feeding tubes and other such apparatus. This time I felt like a fraud with Arjun.
Arjun has none of these machines with him. He is not hooked up to breathing or suction machine all the time, he is not dependant on these to keep him alive. Instead he has lots of medications. I was feeling so guilty that Arjun did not seem ‘as poorly as the other children’ that I had questions why we were at a hospice. I even went as far as speaking to the Consultants.
It was a pretty difficult conversation to be honest – I explained how we were feeling like imposters, and that we didn’t feel that Arjun or we as a family had the right to access such a sought after and limited facility – I think she was quite shocked by our questioning.
Sometimes we need to be reminded of how unpredictable and tumultuous our lives are with such a poorly boy. She reminded us of the following:
: Life limiting is unpredictable.
: He has no ‘named’ illness instead he has multi – physiological disabilities.
: Just because physically (outwardly) he appears relatively ok i.e. he has no visible tubes or medical interventions it doesn’t mean that they are not poorly internally.
: Each epileptic seizure destroys more and more of his brain.
: the curvature of his spine is so advanced that his internal organ are being crushed, the pressure on his heart and lungs is immense.
: The levels of medication he is on are essentially to keep him from deteriorating into a coma or critical state.
: He has been at critical several times however the time will come when he will not recover.
: We have every right to be at the hospice because it is the best place for Arjun’s long term care needs.
She reminded us that our lives seem ‘normal’ to us but the reality is that it is not. Not many parents are still cleaning, feeding and changing nappies for a 15 year old. Many are seeing their teenagers developing into young adults but this is far from what Arjun’s life or indeed ours with him.
I’m beginning to wonder if after all this we were actually still in denial about everything, that somewhere deep down we still think he will miraculously start talking, walking and feeding ; that we will have the son we always wanted but now we mourn for.