We’ve been home for a few days but my mind is still so cloudy I have found it difficult to post anything coherent. I feel a bit like I’m walking around in a dream, a really, really bad dream.
We’re back to our normal routines, school, work, therapy, homework, etc. but nothing truly seems “normal” at the moment. Michele is busy researching the two upcoming surgeries so that we can better understand what the procedures entail, the best alternatives for Max, and so that we’ll have the right questions to ask as we talk to the doctors over the next few weeks and months. I have returned to fighting with insurance companies in order to be certain that they will cover what they need to for Max. This is an unending battle, especially with the State of Arizona who has once again decided that there is no reason for Max to go out of state for medical care. Although certain unnamed (to protect the innocent) individuals working within Max’s Medicaid plan have told me to run not walk to Hopkins. Go figure, everyone involved knows it’s best for Max to receive care elsewhere but yet the bureaucracy stops the logical from happening. In the end I will fight tooth and nail for months, wasting everyone’s time and taxpayer’s dollars only to have the state approve everything. What an exercise in futility!
As for the kids, even their “normal” doesn’t seem so normal. I received an e-mail from Ellie’s English teacher this week which I confess I opened with trepidation. After my experience with Max’s teachers the last few years I’ve come to expect news from teachers to be less than positive. However, I was pleasantly surprised, in a strange sort of way. Ellie’s teacher was writing to tell me how moved she was by Ellie’s journal entries from last week for her class. It seems Ellie was pouring out her heart and soul about everything that happened at Hopkins. I don’t know why this surprised me, maybe because I see all of this as the only life Ellie has know for the majority of her life, it’s been her “normal”. I admit I cried (Why not? I’m getting really good at it lately.) But I was also thankful that Ellie had a constructive outlet for her feelings when she obviously wasn’t able to share them with us. After the e-mail I asked Ellie if she wrote in her journal because she was uncomfortable talking to us. Her answer made me cry again, she didn’t talk to us because she knew we were already upset and she didn’t want to upset us anymore. More often than not my kids drive me crazy and there are days I’d like to toss them both out a window, after all what mother doesn’t have those kind of days? But the last few days have made me appreciate just what great kids I have. They, like us, have learned to roll with the punches and get back up better people for it.
Perhaps Max is the only one who really is back to normal. He wakes up with a smile on his face and goes to bed with a smile on his face and in between he’s talking a mile a minute, running around wrecking havoc wherever he goes, and just generally being Max. God bless that kid, somehow it makes it easier to get through all of this!
To close on a positive note I spoke with Max’s GI doc yesterday and so far the pathology report for Max’s liver biopsy shows nothing to be worried about. We should have the final report next week because the doctor ordered a few extra tests that take longer to get back. I am cautiously optimistic that we can strike this off our list of things to worry about….
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