Its 3:30am, another restless night as I lay in bed, in the dark praying for wisdom. The tears seem to run down my cheeks and wet my pillow once again. I thought after all these years I had cried out all the tears and I was just working on moving forward. Seems as though moving forward is harder and harder. I don't wake my tired, overworked husband who was in his own pain tonight as he fell into bed. I feel as though I am left to make these major decisions on my own, often wrestling with the options and God night after night looking for the answers. I wonder how many others are out there doing the same thing, I know I can't be alone, not really.
Jennifer, my daughter, had her surgery and is struggling to recover. Tomorrow, or really today, I need to get her into see someone since she sounds like her lungs are becoming more and more congested . She has such a hard time recovering from surgery, even these short 1 hour procedures. We have tried to avoid all unnecessary surgery for this reason. I am now forced into making another decision about more surgery, when will it stop! She has just been through so much and the thought of more pain and long recovery times just makes me crazy. The tears just don't stop as I am forced to weight the risks, consequence's and options. And who am I?! I am not a doctor, or a specialist nor do I have any special degrees in the way our bodies and brains work. Yet it will be me who eventually decides what to do with her leg. Oh, don't get me wrong, I will have consulted all the top doctors in the field, as I already have. I will talk it over with Randy and Jennifer, but it will fall again onto me to finally make the decision. Sometimes, that responsibility weighs so heavy I don't know how long I can bear it. Its one thing to make my own medical decisions but its entirely different choosing for my children, no matter what age. The "what if's" are so frightening and the thought of having something really bad happen because of a bad decision I might make would be unforgivable. I find that the doctors offer little help these days. They just really don't know, she is so complicated and they are so over specialized. They can't see the forest for the trees as they say. The surgeons want to do surgery, the prothetists want to make braces, others want to add more drugs, all in attempt to compensate for this misfiring brain which is causing her one remaining foot to be almost unusable. The last surgery she had on the foot was for tendon lengthening so that she could hopefully stand and walk. The surgeon put on a full leg cast and what was supposed to be a 5 day hospital stay turned into a 22 day nightmare. More surgery, infections, a nursing home because they felt I wasn't qualified to care for her injuries! It was a day and night vidual until I had to break her out of the hospitals so I could take her home to let her recover. In the hospital she developed a wound on her heel which took me 27 months of wound care to get cleared up and almost 3 years to finally get a shoe onto and they all wonder why I don't want more surgery! This burden is so heavy some days, what do I do!? I try so hard to stay positive and keep that flicker of hope burning but the more time that passes the harder it gets. Jennifer is so trusting and so full of hope. Every time someone offers her their ideas for a "fix" and tells her this will work she is all for it, thinking this time it will really solve the problem. I think, because of her brain injury she has some long term reasoning issues which is very common in brain injuries. So she doesn't really concider the ramifications of things not going well only that it is going to "fix" the problem. I spend alot of time trying to walk her through the long term issues of decision making with me but again, the decision will fall on my shoulders.
We continue to react to her conditions in an attempt to give her a better quality of life....... but is it? All this and more because someone decided to drink and drive!
I guess I sound like I am just having a huge pity party, I don't know, maybe I am. Sometimes it helps to just get it out.