Wednesday, July 23, 2008

The slow progression...

We’re all surviving here. It’s a new, surreal sort of survival. I had almost become used to the constant chaos. Watching David for the slightest hint of infection or change. Whisking him off to unending doctor appointments. The ER visits. The ICU stays. The continuous state of panic and worry. Living on adrenaline. Able to go days without sleep or even eating really. Continually waiting for the next shoe to drop. But now. Now it is different. The shoe has dropped and it’s sitting in the room my friends.

There is no more worry about scans and what it will show. Is there tumor recurrence? Are we safe for yet another month? Those worries are gone. Now we have the new worries. We’re no longer worried about it coming back…because it’s here. Now we worry about what it’s doing. Where it’s going? Watching David’s gradual loss of strength and the slow and subtle cognitive changes. Worrying about what will come next.

Some days I don’t even have time to think about everything that is going on or what this will all mean…because getting through the days are difficult enough. Both boys require more and more attention and it’s getting difficult for me to manage. Dave will have lists of things he wants to do or things he needs help on. Unfortunately, many he is unable to do and he has a tough time accepting that and it’s very frustrating for him. He needs more and more assistance with just daily maintenance like dressing and eating and that is difficult for him as well. Alec has become clingier with me and he’s become my little shadow…going everywhere with me. Understandable considering the changes he sees in his father. He wants to keep an eye on me at all times. He’s an amazing little guy, but no matter how grounded and emotionally stable he is…the changes in our life are taking its toll.

It can be exhausting to have two people completely dependant on you round the clock. I continue to loose weight although I am getting my three meals a day in. But I rarely get to finish because by the time I get both fed and am sitting down to enjoy a meal myself, one or both are invariably done and ready to do the next thing. The weight loss is great. It was something I have been trying to do for years…and yet I wish one could choose where to loose it. I used to be quite the voluptuous lady and now the girls just aren’t what they used to be! I could fit two gerbils in my bra cups at this point and they still might have room for a tea party in there! But we all know there are definitely worse things in life and this change I too will adjust to. Just kinda sucks. But enough about gerbils...because really, do they even like tea?

So what do we do now? That's the question of the hour. I don't want to just sit here and watch the slow progression of the tumor, but some evenings it seems as if that's just what we're doing. Some nights David is chatty and willing to do things. Others, he's exhausted and non-communicative. We continue to try and enjoy the summer days and continue to move forward, but it's getting increasingly difficult. The periods of "play time" are shortening but at least we are still able to have them. I guess that is what counts right now.

We will continue to enjoy the moments now and try not to not worry about the future or the unknowns that await us. The future will least we have today.


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