The whole picture

They really should teach health professionals a little more about the whole picture of a client and that family. Physio was hard work today!! Both Caleb and I were simply tired and by the time we motivated ourselves to get there, we were actually quite over it! It is quite frustrating to me to have to spend the majority of the session justifing why we wer both feeling tired and why he was not doing some of the things they had expected of him. This is mostly because they have a difference of opinion with some of our other professionals and I am not convinced that their expectations of Caleb at this point of time are either fair or realistic. Now I undersatnd that they are focused on achieving the best outcome for Caleb, but it is a complicated picture to piece together and each hour of the day determines how much I expect of Calebs functionality. I wish that there was a way to educate our students more of how to work with a parent and family, rather than assuming they are the specialist!! There may be books of research but for me, this is Caleb and not a case study and he will be determined by his oen journey and not someone elses. He will be motivated and push himself until he is white with sweat running down his face. He will do more exercises and push himself further than asked when he can, BUT there are times when he simply cannot and in those times, I want understanding, compassion and encouragement from our specialists.
Pinsite care was simply excruciating today. Calebs coping reserves were shattered after physio and I found it almost unbearable today. Dad and I struggled through the restraining of him while mum took the other two precious ones for a walk (in the dark as it was so late). Today after talking to Dug in Japan, we are begging for some wisdom and direction from heaven to know how we can possibly work through this for the next 6 months?? Part of Calebs response is actually now anxiety and this is the area that is more difficult to address as he has started to have a psuedo panic attack through the care as well. This sees him completely breathless, breaking out in a rash and hives and needing to strip all his clothes off and his eyes roll back and he is unable to focus on anything.
And so tonight, I am left trying to piece together how to keep walking out this journey. We have seen some incredible progress in Caleb this week and we find oursleves still surrending some of the most horrible moments back into the bigger, more powerful hands of our Father each day and begging for Him to strengthen, direct and clarify the picture for the next day????