Today I went to a multi-disciplinary meeting about Sam. Those present were his physio, OT, social worker, home care nurse, pediatrician and funding agency. I was a little anxious going, as I often come away upset. . Hearing each specialists perspective, means I hear them breaking Sam into little pieces to explain their bit........ I know each person is highly skilled and their skills have helped a particular piece of Sam to work (along with the other pieces) and given him a great quality of life. But I think hearing each piece of the puzzle in an in-depth discussion, is like a bucket of ice water that slaps me in the face and wakens me again to the fact that he has such challenges. For Sam to be analysed, discussed and pondered over feels uncomfortable, yet I know it needs doing. I just want him to be whole: to eat, to poo, to run, to climb up a playground ladder and whizz down the slide ... I want him to be able to kneel on the ground and do a jigsaw puzzle, not be the jig-saw that many people are working on together....
Anyway I had prepared myself for the inevitable post meeting emotions, but it was totally different today! Today as we sat around the table, I was humbled to see and hear from a very special and highly skilled bunch of people that were so delighted to be having the dilemma of, 'where to for Sam now? His pediatrician started by explaining that Sam is literally a 1 in a million, with possibly the odds of it being even rarer quite high. He explained that all people involved in his care have had to make a huge mind shift as we now are faced with a boy that has shown a determination to live. He said that there were many medical questions, but as he is so rare, the answers are unknown. A lot of the discussions were around his developmental delays and lack of physical strength; his development since being in kindergarten; ongoing physio and OT support in the home; and a possible feeding workshop to help him start eating.
Unlike me, I mostly listened! I listened to a bunch of people that have tirelessly worked with Sam and cared for us as a family - particularly over the past 2 years since we moved to this different part of Auckland. I left the meeting before it had finished to get the girls from school, but I left with a deep admiration and fondness for each of the people around that table - Sam is where he is today for their skills, advice, research and time. The NZ health system, for all our complaining, we are very grateful for.
So I came home and sat and cuddled Sam as he was hooked up to his 'wiggle tube' having 'food' whilst he watched tv...... and I felt sad for him that he had a stupid tube stuck in his tummy... but I also felt gratitude that he had a stupid tube stuck in his tummy too..... such is the tension of life!