I’ve only heard this story second hand from Michele but none of it truly surprises me.
On the way home from summer school last week Ellie was telling Michele that her friends’ parents let them go to “raves” (“the so and so parents let them….” is the topic for a whole other post). Max quickly chimed in to tell his sister, “Ellie you don’t want to go to raves because people are there just to do drugs and drink alcohol and the police come!” Michele was a bit disconcerted to hear just how much Max knows about these gatherings considering his tender age of nine but there was nothing to prepare him for Max’s next statement, “Besides boys just go to raves to pick up hot chickens.”
Michele, unaware that raves include “take-out” dinner orders from KFC, had to think about this for a moment or two when he realized that what Max meant to say was that boys are there looking for “hot chicks” not “hot chickens”. When Michele tried to correct him Max responded, “What do you know about boys and hot chicks?” By this point Michele didn’t know if he should laugh or be insulted!
Tuesday, July 6, 2010
Tuesday, June 29, 2010
Reality
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.
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.
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
Sunday, May 30, 2010
Angry
I thought long and hard about whether or not to write this post but emotions have gotten the better of me.....so here goes. The following is a post I found on my Facebook page:
Finally had the amnio this past Friday. Now I am on pins and needles for the phone call on Tuesday or Wednesday letting me know the results. It's week 17, this baby has to be defect free!
Surely, she doesn't mean that children like my son are defective?! After all, I found out about Max's cardiac condition at 20 weeks in utero and his intestinal problems not much after that. I don't know why this post angers me so much but in my world (and in the world of many "special" moms I know) no child is "defective". I find it utterly insulting and infuriating that a "mother" (I'm using the term loosely because I am not convinced that this person could ever be a mother) would think this let alone write it in such a public forum. Our children have enough to deal with in this world adding other people's ignorance is absolutely unnecessary!
OK, I'm stepping down off my soap-box now. Please forgive me if I've offended anyone tonight but I really needed some "blog therapy".
Thursday, May 27, 2010
And so it ends…..
Today is the last day of school for Max and Ellie, 3rd and 9th grade are officially things of the past! The final days of the school year always bring their own excitement and anxiousness for the kids. There are final exams to take, teacher gifts to prepare, desks to clean out (something tells me Max’s teacher sighed a big sigh of relief when Max did his desk, my son’s strong suit is NOT housekeeping so I am fairly certain he spent the year with papers, books, pencils, etc. spilling out of his desk) and end-of-the-year parties to attend.
For me the last days of school are a time for reflection. I ask myself if my children have grown academically and socially. Are they more mature, independent, and responsible individuals? The answers to these questions are always yes, both Ellie and Max have made much progress this year. Ellie has completed the first year of high school and although the road was sometimes bumpy she survived (and so did we!) and even flourished.
As for Max, ah, Max….his is a story all by itself. Last night as I sat writing a thank you note to the teacher who helped Max with much of his work this year I had a huge lump in my throat because I know that a big part of Max’s success this year has been a direct result of her love and appreciation of who Max is. Some of you who keep up with the blog know that months ago as school started I wrote about the trepidation I always feel in the beginning of the school year about Max and new teachers. In my heart I know it is a special soul who can see past Max’s medical issues to truly appreciate his quirkiness, sharp wit, and eagerness to please. This teacher has done just that and she will never know the extent of what this means to me! I know my son has much to offer and teach us and I spend a lot of time convincing people of this, not everyone listens. But this teacher did and she came to see in Max all he is and all he can be and she nurtured this and taught him so much – I’d like to think the teaching was mutual. I’d like to think that she will carry these experiences with Max into her next year of student teaching and in every year to follow. Oh how lucky the children she teaches will be!
And so it ends….and begins….watch out Michele, the summer has started in full swing! Thank God I go to work every day!
For me the last days of school are a time for reflection. I ask myself if my children have grown academically and socially. Are they more mature, independent, and responsible individuals? The answers to these questions are always yes, both Ellie and Max have made much progress this year. Ellie has completed the first year of high school and although the road was sometimes bumpy she survived (and so did we!) and even flourished.
As for Max, ah, Max….his is a story all by itself. Last night as I sat writing a thank you note to the teacher who helped Max with much of his work this year I had a huge lump in my throat because I know that a big part of Max’s success this year has been a direct result of her love and appreciation of who Max is. Some of you who keep up with the blog know that months ago as school started I wrote about the trepidation I always feel in the beginning of the school year about Max and new teachers. In my heart I know it is a special soul who can see past Max’s medical issues to truly appreciate his quirkiness, sharp wit, and eagerness to please. This teacher has done just that and she will never know the extent of what this means to me! I know my son has much to offer and teach us and I spend a lot of time convincing people of this, not everyone listens. But this teacher did and she came to see in Max all he is and all he can be and she nurtured this and taught him so much – I’d like to think the teaching was mutual. I’d like to think that she will carry these experiences with Max into her next year of student teaching and in every year to follow. Oh how lucky the children she teaches will be!
And so it ends….and begins….watch out Michele, the summer has started in full swing! Thank God I go to work every day!
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