I considered blaming the lack of recent posts on the start of school and all the chaos that brings but I decided that would just be more of an excuse than anything else. Indeed life has been rather boring, or at least as boring as it gets at our house, so I haven’t had a great deal to report. The kids have pretty much settled into their routines and we’ve settled into yet a greater lack of sleep. I find myself already looking forward to Fall Break which for me translates as a week off from chasing kids to each of their many events, religious ed classes, therapy sessions, etc., etc. Plus there’s always the added bonus of no homework, talk about a perk for mom!
On the Max front I am ashamed to report that this morning I actually turned into one of those mothers I despise…I sent Max to school with a cough and a lovely case of the sniffles. I really hate when parents send their sick kids to school but with Max whenever one of these respitory events starts I know it’s the prelude to a week’s absence at school. So this morning I decided to send him in just long enough to infect everyone else and to pick up his work packet for the week so that he won’t get too far behind. Selfish, I know but I try not to max out his absences in the first month of school. As much as I abhor sick kids being sent to school I have equal disdain for obnoxious letters sent home from the school regarding excessive absences. I often wonder why after four years they actually waste the paper these letter are printed on, it’s not like they don’t know Max’s medical history. Certainly they get the fact that he is going to be sick more than your average bear. Heck, they have letters from several doctors telling them this. Ah the bureaucracy of the public school system, gotta love it!
Ellie seems to be surviving her first days of high school. However, I can’t be completely sure of this because when we ask her how her day went we get the typical teenage answers, rarely more than one word in length. She has been put in a few honors classes, has tested out of two years of Spanish, and is on the swim team – hopefully, she hasn’t bit off more than she can chew. So academically she seems to be doing well and on the “practical” front she has mastered the bus route situation, mostly because I decided to let her handle it on her own which means I can no longer screw her up.
After my last post many of you asked for the full bus story so in hopes that Ellie won’t be reading this (she’d kill me for embarrassing her) I will enlighten you all on the pandemonium of her first day of high school which all began before she even arrived at the doors of the school building. Long story short, this year marks our first experience with the monster known as the yellow school bus. Until now we have always dropped Ellie at school and Max’s principal told us from day one that he’d prefer to have us drive Max to school. Evidently he’s a bit freaked out about having a kid with nothing more than wire clips holding his chest together on the school bus. Go figure…
And so I digress...picture the first morning of school, dad finishes taking the obligatory “first day of school” pictures and off we go to the bus stop. Our first mistake was that we were about ten minutes early so as we came around the corner we saw the bus (or so we thought) pull up to the stop. I yell, “Run, Ellie, run!” so off she goes and boards the bus. As I turn to walk home I see one of our neighbors pulling up with his daughter in tow. I decided to refrain from telling them that they missed the bus, smug in my triumph of the school bus routine. Within a split second, I realized these folks have far more experience with the yellow beast than we do. I immediately get a sinking feeling in the pit of my stomach – I had put my daughter on the wrong bus to destinations unknown! As I arrived home I received the first of a barrage of texts from Ellie, she was on the way to another high school about ten minutes away. I told her to sit tight and wait for me to pick her up so I could take her to the right school. By this point Max was laughing hysterically at the idea of his sister being lost, surprisingly enough Michele was not quite so entertained by my incompetence. As I’m hopping into the car I get yet another text from Ellie telling me that the bus driver was brining her back to her bus stop. I heaved a big sigh of relief which lasted about ten seconds as I watch the right bus pull up, load kids and depart. I continue my wait and yet no one shows, by this point I have no idea where Ellie is. Finally, I text her to ask for her status and she replies that she is at the right school because bus driver #1 (wrong bus, wrong route) has flagged down bus driver #2 (right driver, right bus) and they made a transfer of hostages mid-route. (“Gee El, thanks for the update,” I think to myself.) And to think we were able to fit in all this excitement before first bell, talk about the Keystone Cops! I’d like to think we are very talented at disaster-causing events but Michele insists it’s just that we aren’t happy if we’re not making a name for ourselves! So there you have it, it wasn’t as short a story as I hoped, but you can’t always condense chaos!
Just received a call from Max’s school, my ruse has back-fired and Michele is on his way to pick up typhoid Max as I write this. Oh well, can’t blame a girl for trying. Wishing everyone a great week!
Monday, August 24, 2009
Thursday, August 13, 2009
And so it begins.....
On Monday the kids started a new school year. Gone are the days of endless hours of TV, computer and video games. Gone are the days of no schedules, late dinners, and most importantly NO HOMEWORK WARS! Life as I came to know it has officially ended.
Obviously the kids were equally excited about the start of the academic year. Ellie started high school and it's not only a school change but her first ever venture into the public school system and all that this entails. Max took the whole thing in stride as he usually does. His classroom this year includes 31 kids! Word on the street is that his new teacher is a no-nonsense, get your work done, stay organized and do it all quietly type of girl. I've been told you can hear a pin drop in her room. And then came Max....God help them both!
Why is Max's desk the only one directly facing the blackboard?
Could this be the last smile we see for the next nine months?
Walking to the bus...the wrong bus that is!
Obviously the kids were equally excited about the start of the academic year. Ellie started high school and it's not only a school change but her first ever venture into the public school system and all that this entails. Max took the whole thing in stride as he usually does. His classroom this year includes 31 kids! Word on the street is that his new teacher is a no-nonsense, get your work done, stay organized and do it all quietly type of girl. I've been told you can hear a pin drop in her room. And then came Max....God help them both!
So all in all we seem to be surviving the first few days of school...that is if you overlook putting children on wrong buses to wrong schools (that's a whole other story)...
Enjoying the last few hours of summer freedom.
Why is Max's desk the only one directly facing the blackboard? Could this be the last smile we see for the next nine months?
Walking to the bus...the wrong bus that is!Friday, August 7, 2009
What the New School Year Means to Me
No this is not the title of a student's essay after their long summer break but rather the thoughts of a parent of a chronically ill child.
Every year at this time, I find myself to be more anxious than I usually am and believe me I have become a very anxious person these last eight years. At first, this anxiousness is just a strange feeling in the pit of my stomach but it soon evolves until I realize that it’s the start of the school year that has me so uptight. This isn’t a carryover from my own school days but rather a concern for what the year will bring for Max. Who will his new teacher be? Will she understand and accept him for what he is or will she only see a child with a long list of medical problems that in her mind equates him with “stupid”? I know that for some of you this might seem a gross exaggeration but if I’ve learned nothing these last few years I’ve learned that society as a whole has no idea how to deal with the chronically ill individual. For chronic kiddos this often means that in the minds of some their physical challenges are often confused with mental challenges. As we all know this doesn’t apply to these children and it certainly doesn’t apply to Max. Yet we have encountered it time and time again, and I must admit it’s one of the things I hate most about parenting a medically fragile child. When Max was little we could keep him insulated in our world and the medical world where everyone is used to children like Max and adores them for who they are, not what they are. At the time, I dreaded the day when Max would no longer be in our cocoon and would face these types of issues. That day has arrived and it never really gets easier. It affects our relationships with everyone, the school administration, teachers, classmates and their parents. We often walk away from these encounters knowing many of these folks look at Max (and us) with uncertainty and worst of all pity. It’s difficult to be seen as “different” when we don’t feel that we are. Yes, we have a ton of medical issues and all that this implies to deal with but underneath all of it we are really just a family going about the mundane tasks of daily living just as all families do.
So here I sit anxious beyond belief, praying that this will be a good year for Max. The beauty of it all is that no matter what Max is such a happy-go-lucky kid he’ll have a great year in spite of what happens, including all of my worrying. Thank God this child has such a wonderful outlook on life, in spite of all he’s been through. I guess that in the end this means all my worrying is just wasted energy…not that this logic stops me. After all, one of the biggest perks of motherhood is the ability to worry about everything and anything!
In closing, I must also add that Ellie starts high school this year (Is that possible? After all, it was only yesterday I dropped her off for her first day of kindergarten.) We all know that this brings on it’s own type of anxiousness....ah, the joys of parenting a chronic kiddo and a teenager….and people wonder why I drink!
Every year at this time, I find myself to be more anxious than I usually am and believe me I have become a very anxious person these last eight years. At first, this anxiousness is just a strange feeling in the pit of my stomach but it soon evolves until I realize that it’s the start of the school year that has me so uptight. This isn’t a carryover from my own school days but rather a concern for what the year will bring for Max. Who will his new teacher be? Will she understand and accept him for what he is or will she only see a child with a long list of medical problems that in her mind equates him with “stupid”? I know that for some of you this might seem a gross exaggeration but if I’ve learned nothing these last few years I’ve learned that society as a whole has no idea how to deal with the chronically ill individual. For chronic kiddos this often means that in the minds of some their physical challenges are often confused with mental challenges. As we all know this doesn’t apply to these children and it certainly doesn’t apply to Max. Yet we have encountered it time and time again, and I must admit it’s one of the things I hate most about parenting a medically fragile child. When Max was little we could keep him insulated in our world and the medical world where everyone is used to children like Max and adores them for who they are, not what they are. At the time, I dreaded the day when Max would no longer be in our cocoon and would face these types of issues. That day has arrived and it never really gets easier. It affects our relationships with everyone, the school administration, teachers, classmates and their parents. We often walk away from these encounters knowing many of these folks look at Max (and us) with uncertainty and worst of all pity. It’s difficult to be seen as “different” when we don’t feel that we are. Yes, we have a ton of medical issues and all that this implies to deal with but underneath all of it we are really just a family going about the mundane tasks of daily living just as all families do.
So here I sit anxious beyond belief, praying that this will be a good year for Max. The beauty of it all is that no matter what Max is such a happy-go-lucky kid he’ll have a great year in spite of what happens, including all of my worrying. Thank God this child has such a wonderful outlook on life, in spite of all he’s been through. I guess that in the end this means all my worrying is just wasted energy…not that this logic stops me. After all, one of the biggest perks of motherhood is the ability to worry about everything and anything!
In closing, I must also add that Ellie starts high school this year (Is that possible? After all, it was only yesterday I dropped her off for her first day of kindergarten.) We all know that this brings on it’s own type of anxiousness....ah, the joys of parenting a chronic kiddo and a teenager….and people wonder why I drink!
Monday, August 3, 2009
Max's Guardian Angel
This week Phoenix Children's Hospital and many "Heart Families" said goodbye to Mike Teodori. If you ask a colleague they will tell you that Dr. Teodori is one of the country's top pediatric cardiothoracic surgeons, if you ask one of "his families" they will tell you that he is a beacon of light in the darkest nightmare, a shoulder to cry on when you think you have no more tears to shed, but above all else he is a man who works miracles with our heart kids. Dr T does all of this without ego or pretense. Whenever we run into him hugs and kisses are exchanged as if we just ran into an old friend or family member. He thinks nothing of bending over and picking Max up to give him one of his trademark bear hugs. We all adore him and so it was with very heavy hearts that we marked his departure from Phoenix. We count ourselves among the lucky; we will stay in contact with Dr Teodori as he promised he’d never be more than a phone call away. Because I am sitting here with a lump in my throat, I think I'll just call it a night. What follows is part of the tribute we wrote and shared with the other families at this week's farewell as well as some photos of Max and his guardian angel.
When Max was about three years old he told us about being in the OR before Dr T began his open heart surgery, it was Max's first and he was only six weeks old. Naturally we thought he was enlisting a toddler's imagination but what he said to us took our breath away. He said, "When they brought me into the room Dr Teodori put his hand on my forehead and told me it was going to be OK, he was going to fix my heart." While we logically know Max could not have a real memory of the surgery we know his description was probably not far off track. In our mind's eye we could imagine Dr Teodori making what might seem like a simple gesture to a patient but it truly represents what Dr T is, a man who loves all his children as if they were his own.
Dr Teodori, we love you, we thank you and we will miss you with all our hearts! PCH will never be the same without you! Grazie Mille!
Before - Dr T and Max at 8 months old
After - Dr T and Max at 8 years old
A surgeon admiring his work
Just a few of Dr Teodori's mended hearts
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