Not a week went by by without some form of appointment and often several. Max was seen by a Pediatrician, Neurologist, Psychologist,Occupational Therapist,Speech and Language Therapist,Audiologist,Orthotist and the list went on. In fact I felt that we were going for some kind of record to see every "ist" that existed. Our beautiful little boy suddenly seemed to become the focus of many Professionals attention and each one bought with them their concerns about what he couldn't do. It was rare for anyone to say anything positive about him and suddenly the things we had regarded as positive became an issue. His placid nature and passivity which was to us a bonus became a problem. His cuddly soft relaxed limbs became hypotonic or floppy.
I can remember experiencing a variety of different emotions. They ranged from fear, what did this mean? what was wrong? was it serious? life limiting? degenerative? Would he ever walk? talk? go to school? ride a bike? I played the trade off game in my head, tried to work out what I could cope with and what I couldn't. Ironically the thing I feared most was learning disability. Some days I felt desperate, others I just got on with it, sometimes I would dip my toe into the world of special needs only to feel guilty and like we didn't belong there, yet it became increasingly more apparent that he wasn't like his peers either. So where did we belong? Where did we fit in?.
Each appointment bought with it a hope that maybe this time we would be given an idea of what was wrong, what was causing his difficulties and how we could help. Each appointment was stressful and disappoiniting, Max often didn't cooperate with the Therapists and sessions turned into battles. I would ask questions like "will he ever walk" and "what does this mean" usually to be met by responses like " we are not sure, yes probably, but he is very floppy". At the time I remember feeling that it was all some kind of strange power game and that really they all knew what it meant but just didn't want to share it with me.
|Max aged 2 years.|
Over the years I have processed many different emotions in my journey to understand and accept Max's disability. There is however a recurrent theme and that is the difference between acceptance and loss of hope. Max has a lifelong neurological condition, it will never go away and there is no cure. I accept this and even if I wanted to I couldn't change this. Accepting this is not the same as giving up hope. I still have hope, dreams and aspirations for him. I want more than anything for him to lead a happy, fulfilling life where he is accepted and loved. There were times when we wondered if he would ever walk,talk,run and ride a bike. He has achieved these things and many many more. I accept Max unequivocally for who he is but I will never ever give up my hope.