Saturdays and Sundays in the Hospital here at TCH are always interestin. For one we do not get a schedule we can follow but there is still Therapy to be done and that makes it a bit difficult to know when to stay in your room or follow Connor's wish for traveling around the hospital. Then there are always some events scheduled and today was a Circus Theme at the Atrium and when I talked to Ron this afternoon it had something to do with coloring Elephants :)
We are still having some issues to deal with when it comes to the timing of Connor's medications and the way they are to be given to him. We finally had a wonderful nurse that wrote out a list of his daily medications and the way Connor prefers to take them ... and never less it still ends up not the way he wants it. It might seem petty but it is frustrating at times and after 38 days it might be do to us having a burnout ...
Ron also mentioned Connor having a hard time at Therapy today and sometimes he does have a difficult day the day after he gets his big doses of medications. Plus he started on the new twice daily doses of Cyclosporin so who knows. I almost forgot, Connor also started to get medication to help him lower his blood pressure since it has been fairly steady in the 120 to 130 range.
My Mom told me earlier she is glad that I had warned her about the way Connor looks now because even thought she was prepared it was still a bit of a shock to her. I did talk to my Mom at length today and it really was good for me to hear how scary all of this has been for her and how helpless she and my family is feeling being in Germany. Sometimes Ron and I are in the middle of it all and we might forget that it is very emotional to those of you that love our boys as well.
Here at home it has been a busy day but also a happy day because it is heaven to have my Mom and Dad here. The busy part is due to trying to fit everything in one day that I would usually divide up in three days but a huge break came again in the form of one of my Angel friend, Vickie, who brought over a most delicious meal. So after a day of cleaning house it was precious to sit down to a wonderful meal once again. I tell you this is what spoiled feels like :) Tomorrow however I was already told by my Mom I have to proof that I did not loose my touch of baking because I was ordered to bake a Red Wine Cake so when my husband gets home he can go back to having our traditional Coffee & Cake time :)
I read a very touching section from Hope's Mom's care page last night about how angry she gets sometimes when those around her move on with daily life while she is sitting there faced with loosing her daughter and knowing life will never be the same. I have to admit there are days I am in the same place. Not every day but once in a while a day snugs in that makes me sad and worry what the future will hold for Connor and of course I think why him ... I would give quiet a bit to just hear the reason why any child is dealt a card that hands him pain and possible death like in Hope's case. This is what can drive a brain insane. I know I sound harsh but I am to the point that I just don't see a reason in this. Any disease is horrible in it's own way but why at age 5, 8, 12, 14 etc ?????? (those are the ages of the kids we met on our journey that are dealing with terminal diseases).
So you wonder. I always look for the good and I do believe in the glass to be half full but it obviously does not make things turn in your favor. So can you tell I will not be reading the book that tells you that you can force good things to happen to you if you just believe it? Because that would mean all the families I met and us included must have been sitting there asking for something bad to happen ... NOT!
Maye be in my 'next' life I become a philosopher - Ha Ha
Hugs,
R A C A
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