The ironic thing is, I was writing her out of frustration with issues regarding William's care...in particular the general medical system...this process and people we're stuck dealing with. I'm so frustrated with aspects of William's care that I feel the need to outline reasonable expectations when dealing with his medical staff. ... how to deal with the lack of response when I'm trying to communicate with these professionals who are supposed to be caring for my very ill son. The fact that doctors and nurses are now giving out their email addresses as a preferred method of communication....I then oblige and find myself spending painstakingly efforts to write thorough, yet concise emails explaining these complex issues and concerns....but then they never respond back...no email, no phone call...no "I received your email Mrs. Relyea and we're working on it." Even when its a one-liner asking for a simple prescription refill or a copy of William's weekly labs, I don't even get that...really, how simple are those requests! Frustrating is an understatement here....
I often say caring for William and meeting his needs is the easy part....its all the other stuff that makes this experience so difficult....its the management issues...the insurance nightmare...the interpersonal interactions and familiar stressors that are the things that nearly put me over the edge on a regular basis. To these medical people, the fact that I notice small changes in William from day to day....or that I am the one there reminding his primary care doctor that another specialist once gave William a targeted goals for his labs...even though the "normal" range is different than what is best and needed for his body. It's me who is chiming in with a reminder of William's partially damaged kidney. Yes, I am the one there saying all these things....remembering all the little details that make William so unique (and complicated)....yet I feel like its falling on deaf ears....like I'm the invisible one.
As frustrating as it is, part of me has to commend this doctor for even acknowledging the time frame of her response. Even more appealing is the fact that I instantly fell in love with her very appropriate term, "longer than ideal." I've now adopted it as my personal motto.
The past 16 months of William's illness has been "long than ideal."
William's dependency on TPN is certainly longer than ideal....
I'd classify the124 days hospitalized since December 2009 as being longer (or much longer) than ideal, particularly since all but 42 of those days were after the cancer treatment....
Hell, I'd say it takes "longer than ideal" to put William to sleep every night. Yeah, those nights, like tonight, when it took over an hour and a half to settle him to sleep.....long than ideal in my book for a 22-month old!
Its been longer than ideal since I've had a decent night's sleep, say anything over 3 consecutive hours in my own bed could be really nice....
Certainly has been longer than ideal since we've gone on a vacation. Wait, what was that word?
Above all else, its been longer than ideal since our family has felt the comforts of normalcy....experienced boredom....enjoyed a dinner out at a restaurant together....had time without some sort of major stressor hanging over us...even enjoyed a simple movie together.....
~
I feel by referencing these frustrating aspects of our life with "longer than ideal," it brings some sense of comfort, consolation... peace to the situation.....if only....
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