Only now I mean this literally. Michele called me at the office yesterday afternoon to announce that our air conditioning was on the fritz; by “fritz” he meant to say that it had completely stopped working and it was inching towards 90 degrees in the house. Welcome to the fires of Hell! And while this would be considered a “code red” during anyone’s Arizona summer, the problem had a greater urgency for us as Max had woken up in the morning even sicker than he had been (that’s another story) with a fever of 102. By the time I got home to call contractors Max looked like he needed to be wrung out. I found him lying on the sofa under the ceiling fan as if someone had sucked the life right out of him.
As I started calling every air conditioning guy we have ever used (and believe me we’ve used plenty) I quickly became aware that I needed to pull out the big guns. Because no one was interested in coming out to the house for at least 24 hours I realized that it was time to play the “Max card”, so I began to give them, “But I have an ill child who could not possibly live in this heat for another day or two” story. Several phone calls later I found the guy we have often used when the AC goes out at some odd hour in the middle of the night (isn’t that the only time these things ever happen?) who promised he would come by as soon as he finished the job he was on. When he finally arrived and took a look at our dinosaur of an AC system he pronounced the motor dead. So several hundred bucks later we ascended the fires of Hell and the AC buzzed into action.
I believe this fiasco qualifies for the new motto I mentioned in Friday’s post, “It can get worse, but suck it up and just wait for the next disaster.” So nearly $2,000 in less than five days later I’m just sitting around waiting for our next disaster…..Michele get my straight jacket ready……
Wednesday, May 27, 2009
Friday, May 22, 2009
You know it’s been a really bad week when…..
…..you need a calculator to count your daily disasters. Because this week has been pretty rough I haven’t had much to share, mostly because I’ve teetered between tears and absolutely blinding anger so I decided it was better if I just kept to myself. I also thought since I am the first one to take the “it could be much worse” approach to life complaining about some of the mundane and not so mundane issues that have cropped up this week would only make me look weak in my convictions. However, since my week officially went south today I thought my choices were to write about it and thus vent or have Michele call for a straight jacket in my size. Since our insurance doesn’t have great mental health benefits I thought I better vent.....
You know your week is only going to get worse when the first half of the week resembles a natural disaster in medical terms. First, Max’s GI doc decided to order a barrage of tests for Max due to her concerns with Max’s growth and nutritional status. Michele and I aren’t so sure Max needs these tests especially because they’re pretty invasive. But because we are afraid to err on the side of neglect of what might be a real issue Max will spend the first two weeks of his summer vacation being poked and prodded. I think my anger here is based on sadness, sadness for my son who can never really enjoy the simple things in life like a summer vacation because there’s always some horrible medical issue interfering with him just being a KID. The second medical fiasco of the week occurred when we brought Max to the pediatrician for what we thought was his annual “well check”…..not so much. Max presented with a high temp (unusual for him), horrible breathing, and poor pulse ox numbers. So when your pediatrician starts a sentence with, “I don’t think it’s the swine flu…” much of what follows is pretty much a blur. I remember thinking, “sure why not?” We’ve won so many medical lotteries with Max why not this one too? Medically I think the only thing that could have made matters worse this week would have been a call from Hopkins telling us that Max’s aorta measurements were indeed showing dilatation. Maybe they’re saving that for next week? I don’t know but I’m finding it difficult to stay positive this week…..
You know your week is only getting worse when you can add the mundane, run-of-the mill problems of daily life to your not so mundane disasters. Today the mundane exploded in full glory. I took the van in for a quick oil change only to find out that in fact it needed over a thousand dollars worth of repairs….my first thought here was, “oh crap, do I even have a credit card with that much room on it?” We’ll find out in a few hours when I go to pick it up…..
So all in all it’s been a really bad week. My new motto for this week has become “it can get worse, but suck it up and just wait for the next disaster.” Have I mentioned I’m finding it hard to stay positive?
You know your week is only going to get worse when the first half of the week resembles a natural disaster in medical terms. First, Max’s GI doc decided to order a barrage of tests for Max due to her concerns with Max’s growth and nutritional status. Michele and I aren’t so sure Max needs these tests especially because they’re pretty invasive. But because we are afraid to err on the side of neglect of what might be a real issue Max will spend the first two weeks of his summer vacation being poked and prodded. I think my anger here is based on sadness, sadness for my son who can never really enjoy the simple things in life like a summer vacation because there’s always some horrible medical issue interfering with him just being a KID. The second medical fiasco of the week occurred when we brought Max to the pediatrician for what we thought was his annual “well check”…..not so much. Max presented with a high temp (unusual for him), horrible breathing, and poor pulse ox numbers. So when your pediatrician starts a sentence with, “I don’t think it’s the swine flu…” much of what follows is pretty much a blur. I remember thinking, “sure why not?” We’ve won so many medical lotteries with Max why not this one too? Medically I think the only thing that could have made matters worse this week would have been a call from Hopkins telling us that Max’s aorta measurements were indeed showing dilatation. Maybe they’re saving that for next week? I don’t know but I’m finding it difficult to stay positive this week…..
You know your week is only getting worse when you can add the mundane, run-of-the mill problems of daily life to your not so mundane disasters. Today the mundane exploded in full glory. I took the van in for a quick oil change only to find out that in fact it needed over a thousand dollars worth of repairs….my first thought here was, “oh crap, do I even have a credit card with that much room on it?” We’ll find out in a few hours when I go to pick it up…..
So all in all it’s been a really bad week. My new motto for this week has become “it can get worse, but suck it up and just wait for the next disaster.” Have I mentioned I’m finding it hard to stay positive?
Sunday, May 17, 2009
Our Boring....
It’s official, we're boring! Although I LOVE boring it lends itself to less than exciting posts. Both kids are very much in end-of-the-school-year mode which works beautifully for Max because he finishes up this week. It's not so OK for Ellie who still has another three weeks of school left. I think once she knew she would be changing schools next year she sort of checked out early on this year. Not great but try explaining that to a thirteen year old! I have to admit that I too spent this weekend in end-of-the-school-year mode. I didn't have to sit on Max (literally and figuratively) to finish his homework and practice his spelling words - two and a half months without spelling tests, whoopeeeeeeeeeeeee! I have found my nirvana.....
We're still waiting on word from Mayo and Johns Hopkins on their final interpretations of Max's recent cardiac echo so for now the wait lends itself to “our boring”. I have both convinced myself that everything will be OK as well as mentally planned for a summer trip to Hopkins. Logically I know that the situation is surely not that tragic or urgent but I lost my ability to stop my mind from taking off on its own long ago. I guess that’s what happens after eight years of one fire drill after another, I tend to expect that the next one is right around the corner. Oh well, on that note I wish everyone a happy week!
We're still waiting on word from Mayo and Johns Hopkins on their final interpretations of Max's recent cardiac echo so for now the wait lends itself to “our boring”. I have both convinced myself that everything will be OK as well as mentally planned for a summer trip to Hopkins. Logically I know that the situation is surely not that tragic or urgent but I lost my ability to stop my mind from taking off on its own long ago. I guess that’s what happens after eight years of one fire drill after another, I tend to expect that the next one is right around the corner. Oh well, on that note I wish everyone a happy week!
Friday, May 15, 2009
Better Late Than Never
I realized today that I never posted a photo or two of Max's birthday and thought I better do so before he calls me on it (Max checks this blog daily to make sure his secretary, I mean mother, is doing a satisfactory job keeping his people apprised of his every move).
Best buddies.....I love this picture!
Not sure if he's more interested in the gift or the cake!
If only they were always like this.....Have a super weekend all!
Sunday, May 10, 2009
Mother's Day Musings
I spent a good part of today in a funk (much to my children's dismay) which is what you get when you reflect back to other Mother's Days spent in NICUs, ERs or any other non-festive setting for that matter. As the day wore on I got myself together, had a nice lunch with Michele and the kids, cuddled with Max on the sofa while he read his books for school, opened the gifts Ellie and Max made for me and then put them both to bed -- in my bed of course! All of these very typical activities reminded me that although one of my children has several serious medical conditions requiring that I count the number of his surgeries in dozens, give him more medicines then I can ever seem to remember, and take him to endless doctor's appointments and medical tests, I am BLESSED!
Although I came to this conclusion on my own it was confirmed for me this evening while reading a website I check in on from time to time for parents of kids with special needs. What I discovered was that there might just be some perks to parenting a child with special conditions of any type. Because I got such a chuckle from it I thought I’d share it. I hope the author, Terri Mauro, also the mother of some special kids doesn't mind but I also hope you can see the same wisdom and humor in it I did.
As a mother of a special kiddo......
1. You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.
2. Developmental delays = more years of hugs, kisses, and little-kid sweetness.
My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same?
3. Maybe someday, Ty Pennington will come build you a house.
Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.
4. Any little milestone is a cause to throw a party.
Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.
5. Every day is a learning experience.
Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.
6. You have the privilege of putting several doctors' children through college.
After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.
7. You meet a better class of parent in waiting rooms and support groups.
Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.
8. You have an iron-clad escape excuse for any occasion.
You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)
9. Coming up with new strategies every day keeps your brain sharp.
They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.
10. Your blessings will always be fully counted.
Other parents may take the gifts that their children bring for granted. Not you. Not ever.
Although I came to this conclusion on my own it was confirmed for me this evening while reading a website I check in on from time to time for parents of kids with special needs. What I discovered was that there might just be some perks to parenting a child with special conditions of any type. Because I got such a chuckle from it I thought I’d share it. I hope the author, Terri Mauro, also the mother of some special kids doesn't mind but I also hope you can see the same wisdom and humor in it I did.
As a mother of a special kiddo......
1. You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.
2. Developmental delays = more years of hugs, kisses, and little-kid sweetness.
My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same?
3. Maybe someday, Ty Pennington will come build you a house.
Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.
4. Any little milestone is a cause to throw a party.
Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.
5. Every day is a learning experience.
Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.
6. You have the privilege of putting several doctors' children through college.
After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.
7. You meet a better class of parent in waiting rooms and support groups.
Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.
8. You have an iron-clad escape excuse for any occasion.
You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)
9. Coming up with new strategies every day keeps your brain sharp.
They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.
10. Your blessings will always be fully counted.
Other parents may take the gifts that their children bring for granted. Not you. Not ever.
Wednesday, May 6, 2009
Mixed Reviews
We're just back from our once a year "all day" trip to the Mayo Clinic in Scottsdale for Max's cardiac check up. There was some good news and some potentially HORRIBLE news. Max's cardio echo (ultrasound of the heart) shows dramatically improved left-ventricle function (the left side of his heart is beating better and stronger) then what it has been since his open-heart surgery in June 2007. We'll take that news and run, two years later and we're finally starting to get back to where we were -- no one said Max was a fast healer!
The not so great news is that Max's aorta may be dilating again, this time further up from were they did his aortic repair during the '07 surgery. Obviously this is not great news but what makes it even worse is that this dilation is in an area of the aorta they do not like to have to operate on. We're not in a panic just yet because today's doctor (Max's Phoenix cardiologist as opposed to his New York cardiologist or his Baltimore cardiologist....just how many cardiologists does this kid have?) still needs to look at Max's previous numbers as well as his cardiac MRI from December at Hopkins to be certain that the aorta is truly bigger now than it has been. So unlike my typical self I have decided to wait and freak out only when things have been confirmed......does anybody out there believe me?
Tomorrow Max has his G.I. check-up, can't wait to hear what can/has gone wrong with that body system.
The not so great news is that Max's aorta may be dilating again, this time further up from were they did his aortic repair during the '07 surgery. Obviously this is not great news but what makes it even worse is that this dilation is in an area of the aorta they do not like to have to operate on. We're not in a panic just yet because today's doctor (Max's Phoenix cardiologist as opposed to his New York cardiologist or his Baltimore cardiologist....just how many cardiologists does this kid have?) still needs to look at Max's previous numbers as well as his cardiac MRI from December at Hopkins to be certain that the aorta is truly bigger now than it has been. So unlike my typical self I have decided to wait and freak out only when things have been confirmed......does anybody out there believe me?
Tomorrow Max has his G.I. check-up, can't wait to hear what can/has gone wrong with that body system.
Monday, May 4, 2009
Raising Arizona Kids Article
The recent article on Max and Kids Playing for Kids has been published to the Raising Arizona Kids website. This is the article that spurred the news clip I posted earlier and was written, coincidentally, by one of our neighbors whose children go to school with Max. Small world, huh?
http://www.raisingarizonakids.com/index.php?page=1.library.article_view&ar_id=785
Happy Monday!
http://www.raisingarizonakids.com/index.php?page=1.library.article_view&ar_id=785
Happy Monday!
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