With baseball season in full swing (no pun intended) Max has been all-consumed with going to as many games as possible, watching the ones he can’t get to on TV, and making us play mini-games in the backyard (as the temps here have hovered around 105 and up this has not been the highlight of our day) so that he can practice both infield and outfield catching as well as perfect his stolen base slide. Because of all this Max has started to question our logic on why being a coach is so much better than being a player. Obviously Michele and I have always pushed “the coach” thing because we know that there’s no way Max will ever be able to play any sport competitively. Unfortunately, as he sees his sister prepare for her second year of swim team, as he sees other children at the Park practicing various sports, he is starting to accept the reality of his situation – he will never be what he so desperately wants to be --- a famous baseball player. He gets angry at us for saying that being a coach is so much more important than being a star player, he know we’re lying to protect his feelings and at nine it just doesn’t fly like it did when he was five or six years old.
For a chronically ill child life is all about coming to terms with reality, in most cases this comes little by little as they discover the limits their bodies impose on them. This gets more and more difficult as they get older because there is so much more they can’t do: sports, sleepovers or going to grandma’s house because there are way too many meds that you need to take, many amusement rides are off limits, and the list grows. Most of these limits Max has come to accept easily and he copes by minimizing his desire to do them: he doesn’t want to sleep anywhere other than in his own room (or my bed but that’s a different story), he wouldn’t want to go too far away without us because he knows he’d get homesick, he’s not interested in roller coasters because they are way too scary…..he minimizes all of them except the inability to play sports like he wants to.
As his parents we are so proud of how he copes with, and even thrives in, his reality but at the same time it is heartbreaking to watch him come to terms with it all. When he was a baby he didn’t realize that not walking until 20 months, eating through a tube in your belly, and taking a dozen or so meds is not the norm. He didn’t realize that his reality was different, because we didn’t let him see this but now as he grows and matures there’s really no hiding the fact that he’s different from his peers. So as his parents we are dealing with our own new reality of helping Max understand that he is not defined by what he can’t do but rather what he can do because he excels at all of it.
Tuesday, June 29, 2010
Friday, June 18, 2010
Another Day, Another Battle
The last few weeks have been maddening, so much so that I have been unable to write anything meaningful or at the very least something that didn’t make me seem like the candidate for anger management classes that I am.
Many of you will find this hard to believe but our most recent “issues” have been with the state funded health insurance that Max carries due to his chronic medical conditions. I know hard to believe, huh? Health insurance companies are difficult enough to deal with let alone those run by the State! It all started just before we left for Baltimore last March when I received a “congratulatory” letter telling me that my application for Max to be enrolled in the State’s clinic based healthcare had been approved. Application, what application? I have spent the last nine years fighting tooth and nail to keep my son OUT of this program, how the hell did this happen?
Seething, I got on the phone thinking it would be easy to get us out of this mess because Max has primary private insurance which means he does not have to be subjected to the hell known as the Children's Rehabilitative Services (CRS) clinic. Surely, I could get someone to see the logic in this and disenroll him. But instead I was told that, “Based on your son’s cardiac defects he must be enrolled in CRS to receive cardiac care.” To which I replied, “Really? How was he able to receive cardiac care, which you paid for I might add, for the last nine years, including no less than four cardiac surgeries? Was no one able to figure out his diagnosis then?” After much discussion the nurse case manager started to see the logic in my argument and told me not to worry whenever the State received a claim for Max’s cardiac care they would simply pay it out of the CRS budget, there was no need for him to come to clinic. I smugly hung up the phone feeling like I had saved the day…..once again!
This power trip was to be a short one. Not long after my first discussion with CRS I started to receive multiple phone calls from various nurse case managers asking me for all types of information regarding Max, his diagnoses, care, etc. At this point I’m thinking, can’t you people read your own records? Don’t you know all of this already? Why are you asking me questions whose answers must be in Max’s file? I’ve seen this file it’s HUGE. Can’t you people read (by this point I had serious doubts)? However, I never took into account that the State’s filing system leaves a lot to be desired, this became crystal clear when I received another phone call asking me why my son had received no cardiac care since December 2006. Are these people kidding? In this timeframe he has had one open-heart surgery, two cardiac CTs, four cardiac MRIs, enough echocardiograms to fill a DVD library and this woman is asking me why my cardiac kiddo hasn’t had care? Holding my breath and weighing my words (not a talent that comes easily to me) I suggested to this woman that if I had not sought cardiac care for my child in nearly four years I would hope that she would report me to Child Protective Services for neglect! I think my sarcasm was lost on this one but oh well!
Thinking the interrogations had ended I never expected the next call I got. This time they were calling to intimidate me, either I used the CRS clinic for ALL of Max’s care (remember, they originally told me that they would only be handling his cardiac care) or they would not pay and I would be solely responsible for all medical bills. Really? Have these people seen my bank account? There’s NO WAY that’s going to happen. We have worked very hard since Max’s birth to assemble the best team of doctors that we could, if they think I’m going to give this up to see the idiots they refer to as doctors they have another thing coming. In fact, I suggested that if they insist I use their cardiologist, the very same doctor that nearly killed my son before his last open-heart surgery because he dragged his feet for so long, I would be more than happy to bring a malpractice suit up against the whole lot of them. It was strange how quickly they changed their tune. As of now, I’ve set the situation straight…. again, but something tells me not to hold my breath, someone will call me next week with some other ludicrous story.
So now do you understand the lack of blog posts? Have a great weekend all!
Many of you will find this hard to believe but our most recent “issues” have been with the state funded health insurance that Max carries due to his chronic medical conditions. I know hard to believe, huh? Health insurance companies are difficult enough to deal with let alone those run by the State! It all started just before we left for Baltimore last March when I received a “congratulatory” letter telling me that my application for Max to be enrolled in the State’s clinic based healthcare had been approved. Application, what application? I have spent the last nine years fighting tooth and nail to keep my son OUT of this program, how the hell did this happen?
Seething, I got on the phone thinking it would be easy to get us out of this mess because Max has primary private insurance which means he does not have to be subjected to the hell known as the Children's Rehabilitative Services (CRS) clinic. Surely, I could get someone to see the logic in this and disenroll him. But instead I was told that, “Based on your son’s cardiac defects he must be enrolled in CRS to receive cardiac care.” To which I replied, “Really? How was he able to receive cardiac care, which you paid for I might add, for the last nine years, including no less than four cardiac surgeries? Was no one able to figure out his diagnosis then?” After much discussion the nurse case manager started to see the logic in my argument and told me not to worry whenever the State received a claim for Max’s cardiac care they would simply pay it out of the CRS budget, there was no need for him to come to clinic. I smugly hung up the phone feeling like I had saved the day…..once again!
This power trip was to be a short one. Not long after my first discussion with CRS I started to receive multiple phone calls from various nurse case managers asking me for all types of information regarding Max, his diagnoses, care, etc. At this point I’m thinking, can’t you people read your own records? Don’t you know all of this already? Why are you asking me questions whose answers must be in Max’s file? I’ve seen this file it’s HUGE. Can’t you people read (by this point I had serious doubts)? However, I never took into account that the State’s filing system leaves a lot to be desired, this became crystal clear when I received another phone call asking me why my son had received no cardiac care since December 2006. Are these people kidding? In this timeframe he has had one open-heart surgery, two cardiac CTs, four cardiac MRIs, enough echocardiograms to fill a DVD library and this woman is asking me why my cardiac kiddo hasn’t had care? Holding my breath and weighing my words (not a talent that comes easily to me) I suggested to this woman that if I had not sought cardiac care for my child in nearly four years I would hope that she would report me to Child Protective Services for neglect! I think my sarcasm was lost on this one but oh well!
Thinking the interrogations had ended I never expected the next call I got. This time they were calling to intimidate me, either I used the CRS clinic for ALL of Max’s care (remember, they originally told me that they would only be handling his cardiac care) or they would not pay and I would be solely responsible for all medical bills. Really? Have these people seen my bank account? There’s NO WAY that’s going to happen. We have worked very hard since Max’s birth to assemble the best team of doctors that we could, if they think I’m going to give this up to see the idiots they refer to as doctors they have another thing coming. In fact, I suggested that if they insist I use their cardiologist, the very same doctor that nearly killed my son before his last open-heart surgery because he dragged his feet for so long, I would be more than happy to bring a malpractice suit up against the whole lot of them. It was strange how quickly they changed their tune. As of now, I’ve set the situation straight…. again, but something tells me not to hold my breath, someone will call me next week with some other ludicrous story.
So now do you understand the lack of blog posts? Have a great weekend all!
Thursday, June 17, 2010
Tuesday, June 15, 2010
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